God Has Heard

Still here!!!

2011-10-20T17:36:00.002-05:00

Honestly, I've been meaning to post an update here for about 3 weeks now, but just http://www.blogger.com/img/blank.gifcouldn't come up with the right words. I probabhttp://www.blogger.com/img/blank.gifly still can't at this point, but I'm hoping that by blogging it will therapeutic for me. So...

Remember when I posted here how well Jayden was doing in Pre-k at his new school? Well, about 3 weeks after that post, it's like something happened overnight to turn that entire post upside down. I started receiving daily calls from the teacher concerning Jayden's behavior. At first, her tone was always positive and she'd send home notes saying what he had trouble with but that he's working on it (and she'd add a little smiley face). The calls continued, daily and by say the 5th or 6th call, her tone changed. I cannot remember what her complaint was on that day (he was mostly being disruptive during naptime) but when I hung up the phone with her I told my husband that I could tell from her tone that she was just about done dealing with Jayden. His behavior notes were coming home now with a negative tone and of course no more smileys! Well, the next day, she called again. She told me that the speech therapist came to get him during arts and crafts time (I assume they have no control over when the therapist comes b/c taking a 4 yr old away from arts and crafts for something that's frustrating to him is just not a good idea, IMO) and Jayden saw her and started screaming "NO!!" She told me he was throwing his arms around so that she couldn't grab his hands and just kept screaming "No!" (perhaps he was trying to communicate something to them?? Far fetched???) She told me the speech therapist went to grab him by the arms to hold his arms down and he grabbed his scissors and swung them at her. I was speechless. So are you telling me that my son intentionally grabbed a pair of scissors with the intention of actually HURTING the speech therapist? Because that's what it sounds like you are saying and that's not my child. He has NEVER been that aggressive. Now, had you told me he grabbed the scissors and threw them across the room, I'd totally buy that. Just as he would have grabbed a book, a box of tissues, crayons, papers, or just about anything in his reach to express his frustration when words are not working. But he would NEVER intentionally cause harm to someone. So anyway, she goes on to say that she stepped in to help the therapist and Jayden hit her in the nose really hard. I remained speechless. Who was this child she's describing to me?? Once I could compose my thoughts I simply said "I have no idea what to say. This does not sound like my son AT ALL. He has NEVER behaved in this manner. Ever." So then she says "Well, I'm not sure there's much else I can do to help Jayden, at this point." and she went on to suggest moving him back into the preschool class with non verbal 3 yr olds or to a VERY restricted classroom for children with extreme special needs (Jayden does not fit either category). Mind you, she was saying all of this after only 7-8 days of behavior problems. He was once a very well behaved child. It's as if she wasn't willing to take the extra time needed to figure out WHY his behavior changed so tremendously. I got off the phone with her but emailed her later requesting an IEP meeting (definitely something that she should have scheduled prior to suggesting a placement change over the phone), an OT eval, and to let her know that I would be stopping by one day during the week to see if I can tell what's causing him to act like a totally different child.

Well, I went the next day. During naptime, since that's when she claims to have the most issues with him. We walked in and he was COVERED in play doh. in every single nail on both hands, all over his pants, all over his socks, on his FACE! She gives him play doh so he can be quiet during naptime. Play Doh has WHEAT in it. Wheat is off limits to children with Celiac Disease. I mentioned this right away, but I didn't blame her b/c I didn't send her the teacher's form I usually send to his classes. Instead, I sent him GF play doh with his supplies and foolishly assumed he'd only have access to what I purchased for him. But no, it all goes into the classroom supplies and they are shared, which then would cause cross contamination issues. So right off the bat, I saw he'd been exposed to gluten. As I talked to her, I was extremely distracted by the music she had playing DURING naptime. It wasn't a soothing lullaby type song. It was music with different pitches. All over the place. Very distracting...and loud. Jayden has neurological and sensory issues. That music was definitely setting him over the edge. He was noisy during nap b/c he was attempting to block out the music, I'm sure. Even at home, if music comes on TV that he can't tolerate, he makes loud noises. He has always done this. It's a defense mechanism for him. Well, after naptime, the kids started to get up and go to centers. Jayden started out at the painting center. There's a limit to 3 kids per center and the way it's set up is not very kid friendly. They have their pictures on a stick and they stick their pictures inside of a see through envelope. Before entering the center, they have to stop and count the pictures. If 3 are in there, the center is closed. Maybe I'm just used to my kid, and I know he's not as advanced as others, but there is no way he will decide he wants to try a center, then stop and figure out if there's room for him by actually counting stars. He just doesn't have the attention skills yet for that. He's very impulsive. I think for him, velcro tips would work better. If he doesn't have velcro, he can't go in. However, he's not understanding WHY he cannot go into the ceter if he can still open that envelope and stick his picture in. Frustrating. So anyway, it was quite simple for him at first b/c kids were slowly getting up and putting away their mats so the centers were free. Well his best friend woke up and Jayden wanted to play with him. His friend went into the blocks center and two other boys got there before Jayden. Jayden wanted to play blocks with his best friend so he stuck his picture in, making it 4 kids in the center. His teacher told Jayden it was closed and he needed to go to another center. Jayden had a fit. He screamed and cried and was in a frenzy, trying to figure out a way to get in the blocks center. He even grabbed his picture and stuffed it in an envelope in the center next to the blocks. The teacher looked extremely frustrated with him and was not really trying to get him to look her in the eyes so she could calm him. Eventually, one little boy left the center, so Jayden was able to stay. The teacher then said "See, if he wouldn't have been able to stay he would have never stopped." Hmmm. I asked her about the scissors incident, and all of a sudden the story changes to something that sounds more truthful. "Oh I don't think he was intentionally trying to hurt her. He just grabbed the closest item to him. And I think his hand hit me in the face b/c he was still upset and swinging his arms." Of course, his IEP progress report says that he "attempted to hit speech therapist with scissors..." This report will follow him throughout his school history. I am in touch with the superintendent about this...

I emailed her my concerns and suggestions. I sent him a white noise machine from home to use for naptime and I did mention to her that the music was probably making him defensive with his ears. I also sent his weighted vest to help calm him. I continued to suggest the OT. About a week after that, we had the IEP meeting. I noticed that Jayden came home with 2 behavior reports that said he spent "some time" in the preschool class to "cool down" and another day he was bit pretty hard and they had to send a note home about it and the preschool teacher signed it. So he obviously was bit while in a class he shouldn't have been in. I planned to bring that up in the meeting. We arrived 15 minutes early, just in time to see all of the pre-k classes walking to their rooms. Jayden's class passed...no Jayden...About 5 minutes later, the preschool class passed. Mind you, this is the early intervention preschool program for kids with special needs. There were 4 students and 3 teachers. 3 of the students were visibly disabled. The 4th student was the leader of the pack and obviously not disabled and much larger than the other students. The 4th student was Jayden. My husband was pissed. We had not given that teacher permission to move him. I even expressed my concern with it over the phone and told her I didn't want him moved, yet she still moved him. This was going to be a wonderful meeting.

So his teacher starts the meeting by saying "We called this meeting because..." Um, correction. You did NOT call this meeting. I had to request one when you told me you no longer could handle him in your class. Anyway..."Because Jayden has been exhibiting aggressive behavior and refusing to transition in the pre-k 4 classroom. We would like to move him to preschool early intervention, where there are less transitions. more one on one, and less stimulation. I immediately expressed my disagreement with that. I said that I didn't agree with the placement change b/c it would definitely affect his speech. I feel that typical peers are THE BEST speech therapists he could have b/c he wants to be like them. His speech soared within the first 3 weeks of school. He was more sure of what he was saying and wasn't afraid to talk to strangers anymore. He was proud of himself and we were proud of him. I was also concerned about him mimicking behaviors in the special needs classroom. We had this problem at his last school. He would notice other students getting positive feedback for utterances and any sound they made to communicate, but that's b/c that's what they can do. They were non verbal. He is verbal. He needs to be around peers that are verbal. The preschool teacher chimed in and said "Oh but we talk! We talk to them all day!" That's fine, but Jayden follows other kids. If he has the choice to act like a 3 yr old or act like an adult, he will act like the 3 yr old. Also, I was concerned about his social skills. He's an only child (for now) and has had a hard time with learning to share, but has been slowly getting better. Now, in the preschool class, since he's so much bigger and older than the other kids, they teach him to tell the kids "Walk away." Hmmm, not sure that will work for him in kindergarten, other than getting him laughed at by everyone else. After I expressed my concerns, his pre-k teacher shut down. Didn't say a single word for the rest of the meeting. Perhaps b/c she knew she'd messed up by moving him already, without our permission. The meeting was a little over an hour, and in the end, I agreed that since he was already moved to the preschool class (which is where he wanted to be b/c he rules the roost so to speak) he has won the battle and for us to pull him out and place him back into the pre-k class (where he obviously no longer wants to be) would make things worse. He was in the preschool early intervention last school year so he may just be more comfortable. So the plan is to slowly move him back into the pre-k 4 classroom. An easy transition. They want to make it seem like it's a treat for him to go to play with his friends in the pre-k class. For the first week, he had a hard time spending even an hour in the class. The teacher even sent him back to preschool early b/c he wouldn't pick up toys. How stupid?!?! I do think he was acting out at first b/c he thought he was being sent back to her permanently and he's not ready for that yet. The next week, I think he realized that he's only spending a little time in the pre-k class and then he goes back to his comfort place so he's doing much better. They say that he LOVES going to pre-k to play with his friends and he even transitions well while in there. His time will be increased next week.

All in all, he's doing 10 times better in the preschool class, as far as behavior goes. He's doing his lessons, transitioning, helping in class, not screaming, NAPPING (maybe the lack of crazy music helps??), and wanting to impress his teacher daily. He's even doing better in speech and meeting all of his goals. On the other hand, he's not using his words as well at home. He babbles A LOT. He doesn't want to play any game that involves another person holding a toy or game piece. He wants it all to himself. He prefers to play with smaller children now and when he plays with them, he does not talk. He makes LOUD babbling sounds. But then if an adult talks to him, he will use his words. He ignores kids his age. IMO, this is regression. I don't want my 5 yr old seeking the company of a 3 yr old b/c he doesn't feel he has to talk to communicate with them. How is that building his self esteem? He obviously prefers the smaller kids b/c they don;t have the words to outwardly judge him and how he talks. Kids his age do. I know it's hard for him, but he has such a strong spirit and he does continue to try. How long do we continue doing what's comfortable for him before we attempt to push him (even slowly) towards where he needs to be? He's not being prepped for kindergarten in a preschool class. In kinder, they have to share. In kinder, they talk to each other. We know his speech is delayed but if he learned so much from typical peers in only 3 weeks, imagine how much he could have learned in 9 months with his peers?

I'm also still in a fight with the OT. When I asked (several times) whether or not he was getting OT, she never answered my question straight forward. After a stern email about my concern for Jayden, she called me and finally told me that he is INDIRECTLY receiving OT. So basically, she goes to the class to do individual therapy with the other kids and Jayden has the option to either join in with them or continue doing what he's doing on his own. If they are doing something he WANTS to do then he will join in, but if not, he ignores them. OF COURSE. That's not therapy. That's BS. I am truly tired of fighting these people but I can't give up b/c it's all for him. He doesn't know what's best for him. However, being 7 months pregnant, it's really hard to carry such a burden so I'm in the process of getting an advocate.

On the medical side of things, he saw the neurologist today and she thinks he is having small seizures and auras again :( Not nearly as bad as he was last year, thank God for that, but it's still something she wants to address b/c it may have a lot to do with the behavior changes he's exhibiting. He will be admitted to Children's Hospital on November 1 for a 24 hour EEG. Depending on the results, he will either have his medications increased or switched.

Hoping for the best...

2011-09-02T14:51:00.003-05:00

But preparing for the worse. Stay safe, everyone on the Gulf Coast!

Pre-K!!

2011-08-18T15:50:00.004-05:00

He's SO EXCITED about school! It's been 4 days now and he hasn't cried one bit. He gets out of the truck with no problem in the carpool line and when we pick him up after school he either flashes us the HUGEST smile or looks like he is not ready to come home (b/c he's had too much fun at school!).

He eats lunch at the table with his entire class and doesn't mind that his lunch is different from theirs. I'm thinking the other kids may be wishing they had Jayden's lunch! LOL! He does, however, express that he would love to eat breakfast with his class. As of right now, he eats breakfast at home (which for him is generally pediasure and a cereal bar b/c he's not a big breakfast eater) and then he sits at the table at school while the other classmates finish breakfast. He didn't mind doing this at his previous school, but now he wants to eat with his classmates. So I'm going to be spending the weekend in the kitchen baking and freezing breakfast foods for him. Maybe seeing the other kids eat will make him become a bigger breakfast eater? We'll see. He may just waste the food. LOL.

They are learning how to write letters and numbers and Jayden has already mastered the capital letter "A". He's so proud of himself. One new thing about his school this year is that he will be sent home with little homework assignments. We are excited about that b/c we like to see his progress and we love being able to work with him at home.

One of his favorite things about school is the slide on the playground. He spotted the slide during registration day and on the first day of school he told me he was going to get on that slide. When we picked him up I asked him if he got on the slide and his eyes lit up so bright and he sayed "YES!!" The next day, he climbed in the truck and said "Mommy!! The slide was all dirty!" I bet he was disappointed!

So far, it seems like he's going to do so well at this school. We have a parent-teacher conference next week so I can talk to the teacher about any concerns, but so far he has had no behavior reports sent home and his teacher told me that he is just a very sweet child and she loves having him in her class :) :)

My poor, neglected blog

2011-07-07T21:21:00.002-05:00

Whoa...I have seriously neglected my precious blog, but boy do I have an excuse! The first trimester SUCKS!!! LOL!! I remember foolishly telling my grandmother that I would smile every time I barfed b/c I'm just soooo happy to be pregnant. Silly old me! Well, actually, I did smile the first few times. Heck, I even text my best friend and said "YAY! I threw up!!" LOL (She understands my joy!). But after maybe the 6-7 time, the excitement wore off. It started to hurt. I started to lose weight. The smell of food made me want to pass out. I was dizzy all the time (still have dizzy spells on occasion). I ended up in the ER for dehydration. I ended up on bed rest for losing way too much weight. I'm not sure if I know of anyone who would smile through all of that. My mom cooked dinner for us. My aunt brought me soup. My poor husband did whatever he could around the house (which is saying a lot b/c he definitely does not know how to keep a clean house at all!). My niece even came over once a week to clean. So it was great going through this with family near by. By week 10, I was finally starting to feel better. I gained 2 lbs, but I still have a pretty far way to go before I even reach my pre pregnancy weight (about 6 more lbs to gain). I haven't gained a single pound in 2 weeks and my appetite is still not normal, but I'm staying hydrated so that's helping.

The best news...I started the second trimester today!! Good times are sure to come. I still don't really look pregnant, probably due to all of the weight loss, and I don't think I'll look pregnant until well past the 20 week mark, but I'm okay with that :)The baby is growing and doing well and so far, besides the horrible morning sickness, the pregnancy has been going along excellent. I have started a separate blog for the baby. My intentions are to use the blog as my online pregnancy journal and then to blog the baby's milestones once s/he is born. After 1 yr, I will print the pages of the blog using blurb and, voila, a pregnancy and 1st yr book! If you'd like to read it, you can find it at http://letterstobabyjohnson.blogspot.com/

Now how about an update on the soon to be big brother?? Remember how excited he was to start summer camp?? Yeah, well that didn't work out so well. In the first week of camp, they let him swim in his shorts and underwear and changed him into his trunks AFTER he got out of the pool. This means he spent the entire day in uncomfortable swimming trunks with no underwear. The best part?? They lost his shorts and underwear. He was also missing several lunch containers every day. When I asked where they were, the counselors had no idea. My guess is that he wasn't being watched and he threw them in the trash when he saw the other kids throwing their lunch trays away. Another issue occurred due to him not being watched...He had gluten, and he had A LOT of it. I was FURIOUS. Jayden came home jumping off the wall, slapping at us, and screaming at the top of his lungs for no apparent reason. He had explosive diarrhea, threw up, and broke out in a full body rash. Neither of the counselors could say what he ate b/c they weren't watching him. All they could say was that he's a snack snatcher. He's FOUR!! What 4 yr old do you know that just sits around and watches all the other kids eat a snack accept him (he had snacks packed each day but b/c he wasn't watched he was eating everything during lunch and had nothing left at snack time). This was completely unacceptable to me. I let him go for 2 ,ore weeks but things didn't get any better and I pulled him out. It has been a bit difficult having him home while I was so sick, but after 2 weeks of being home, he's already doing better. He will not be attending summer camp next summer, that's for sure. I cannot wait for the school year to start again next month so he can get back into a set schedule and be around his peers.

God can (AND WILL!!) work miracles!!!

2011-05-31T17:37:00.005-05:00

That picture up there?? That's our future baby. And that baby is growing in MY uterus!!! Nope, we didn't run off and have IVF done (although we were (hoping) planning to make a trip the DC in June to begin the process). Nope, I didn't convince my RE to place me on fertility meds again. Not even hormone therapy. Nothing! After the Drs told us that our chances to conceive without medical intervention were slim to none, we started to save our funds for IVF but still held on to hope that God would bless us when we least expected it. Well, we waited patiently for years (nearly 7 to be exact, but who's counting??), and on April 29 we got the surprise of our lives!!

That entire week, I was feeling like I was coming down with something but I couldn't put my finger on it b/c the sick feeling was only coming in waves. I was thinking maybe it was test anxiety b/c my finals were approaching quickly. I was also extremely moody and my patience was getting very short with the kiddos at work, which is just not like me at all (I love my babies!!). I had strange cravings for mac n cheese and once I'd fix myself some I would feel extremely sick after just 3 or 4 bites. Then I had this feeling of always being short of breath. Almost like panic attacks. Then, as usual, when I realize that my period is approaching I start psyching myself into believing I'm pregnant. But this time I felt like it could actually be real b/c even though Mike and I did absolutely nothing different, my body was different that month and we both noticed it. So, after swearing to never take another pregnancy test ever again (the last one I ever took was in 2006) b/c it was like a waste of money to me since they were always negative, I decided to stop at CVS and grab a cheap pregnancy test just for the heck of it. I totally expected nothing other than a negative result and I told myself, at least it would stop me from believing I'm pregnant and then getting my feelings hurt when AF arrived. So I got home with my cheapie test and went upstairs to pee. I read the results and immediately saw the FAINTEST of a line. I blinked and looked again. Took off my glasses, put them back on...still saw the line. "No way." I said to myself. This test must be defective... I decided to show Mike and ask him what he saw. He has never seen a pregnancy test before (what's the use of showing him a negative test, and that's all we have ever had). I asked him to tell me what he saw in both circles. He said he saw one line in one circle and a plus sign in the other circle. I said "OH MY GOD." Mike asked what it meant and I told him it meant "positive". His face lit up but I said "No please don't get excited! I think it's a bad test. I'm going to go out and get another one to be sure b/c this can't be real." So I ran out to Walgreens and got a first response test. Came home and went upstairs again. This time, Mike and Jayden were waiting in the room for me. After a few minutes, I came out of the bathroom with this:

The only thing I remember saying at first was "OH MY GOD! OH MY GOD! OH MY GOD!!!" Then I started crying and saying "WE DID IT!!! FINALLY WE DID IT!!" Jayden was concerned at my tears and said "What's wrong Mommy??" I said it's ok baby Mommy is happy!! Then I went back in the bathroom to let my tears pour down and I thanked God over and over and over again. I am still thanking him everyday all day, honestly. All of my plans to make a "surprise" announcement went completely out of the window. I mean, we had been planning this surprise announcement and how it would all play out for 7 yrs now. If I'm being honest, we just never truly expected it to ever be our turn. I had a dinner date with a good friend of mine so I called her, whispering hysterically (didn't even know that was possible!?!) into the phone, "OMG, I'M F'ing PREGNANT!!!" She was like are you serious?!?! OMG!! She came right over and saw my test and started crying! My mom's reaction was not the same though. LOL! I called her and asked her and my dad to stop at our house before they left for their little date night. She came over and I said "I have to show you something." I gave her my pregnancy test (it was in a ziploc bag!!) and she looked at it and said "Awww, one line is too light so you're not pregnant." :( I said, "Momma, actually if I wasn't pregnant it would only be one line. You wouldn't see any trace of a second line at all. The lighter line just means my levels are still on the low side b/c it's very early." There I just told her I was pregnant. Mom still didn't get it!! LOL! She was still over analyzing the color of the lines and making me show her the directions and the pictures on the box of the pregnancy test. I think she was in shock. Then all of a sudden she's screaming!! My dad walked in and he immediately knew what was up :) Hugs and tears all around! The nest morning, I took a digital just for good measure:

Unbelievable! Seriously, I didn't believe until we saw that little heartbeat just beating away on the ultrasound today. It was so strong and the sound made my heart skip a beat. I actually have another little heart beating inside of my body right now! I am in awe. I've already been extremely ill so far and my Dr said that's good news b/c it means everything is normal and growing and the ultrasound proved such b/c baby is right where we expected it to be, at 8 weeks :) I have a prescription for Zofran and I'm hoping to get my appetite back soon and be able to return to work soon enough to enjoy the rest of summer with the kids at camp.

Jayden is VERY excited. He points to my stomach and tells me that the baby is in there and he takes such good care of me when I'm sick. Sometimes my husband has to pull Jayden away from the bathroom b/c Jayden is a super helpful "Dr" when mommy is sick. He also can sit quietly for minutes at a time, looking through the baby magazines I got from the Dr. I think he is going to be a wonderful big brother!

BTW: His camp counselors made a huge mistake during his very first week of camp and someone served him something with gluten in it. He's been having a terrible reaction to it for a week now. This past weekend, his entire stomach was completely covered in a rash and it was painful and swollen. It seems like the worse is over and I'm sending him back to camp tomorrow with strict orders that he is watched at all times during lunch and he won't be staying there for snack time since I'm not working right now and I can pick him up early. Please pray that they pay closer attention and he is not exposed to gluten again. He loves camp but I won't keep him there if it isn't safe for him.

LONG overdue update

2011-04-25T17:19:00.003-05:00

I've been meaning to post this update for a few weeks now, but it's just been so busy lately! But get ready to have your socks knocked off!!

Jayden is like an entirely different child! Listening (both at home and in public), talking through his frustrations, reasoning, calmly removing himself from stressful situations without having fits, attending to activities in class, no behavior reports from school in THREE WEEKS!! ETC, ETC, ETC!!

First of all, he is no longer on numerous medications that were not even helping his seizures. He is currently only taking one medication and he takes it at night. He hasn't had seizure activity since January. Also, since reading the Explosive Child, I've learned how to talk to Jayden and how to understand why he does what he does. It has helped to lower my stress level and to help him to calm down. Although I have to admit that he hasn't been needing my help to calm down lately aside from simple reassurance.

One major thing that I believe has helped him is that we placed him in a private preschool two days a week. He's in a classroom with all typically developing peers. Whereas, the other 3 days a week, he is in a special needs classroom with multiple kids who each have different disabilities ranging from severe to very minor. Jayden's IEP marks that he has a developmental delay (speech) and epilepsy. Those are his disabilities. However, disability or not, he needs to be in a least restrictive environment, meaning an environment where he is least restricted to learn properly. Prior to enrolling him in the private preschool, Jayden was getting behavior reports everyday from his special needs classroom. He hit someone, he kicked someone, he fought over a toy, he slapped a teacher, he had difficulty attending. EVERY.SINGLE.DAY. The teacher even started writing out paragraphs explaining in detail what Jayden was doing :( He was also kicking and screaming at drop off as if he hated school. And the very sight of his teacher made him scream. On a whim, I decided to enroll him into the private preschool. He struggled the first week. He carried his behaviors from the special needs classroom into the new preschool. He was sent home on both days. To say we were frustrated would be putting it lightly. I contemplated pulling him out and just accepting the fact that my child would not be accepted in a typical setting because of his behavior. The director urged us to keep bringing him and told us that they could see that Jayden wants to be there and that they can work with him. We were told that they would not be calling us to come and get him anymore unless he hurt one of the kids in the class (the two incidents were biting the teacher out of frustration. He never hit any kids.) The next week, he had no incidents. Not even with the teachers. The following week, he was sitting in the circle for story time and napping during nap time. This past week, he was amazing. He enjoyed all activities, and listened to all instructions. A model student. He has since pulled those behaviors from the private preschool into the special needs classroom. His teachers there are floored by the improvement. He comes home and tells us what he did in school. He names shapes and colors. He's identifying his letters again. He WANTS to learn. He's learning at the private preschool b/c he is not as restricted. So this proved to me that I need to be sure that he is not placed in a special needs classroom in August due to his "disabilities". His disabilities do not prevent him from learning but he needs to be in the same environment as his typically developing peers. We will make sure that happens for him :)

Oh and about that behavior chart....the book was right...it didn't work. It didn't work b/c he didn't need it anymore! Everyday he was getting smiling faces (he probably got 2 or 3 sad faces within a month's time)everyday and it soon became redundant and boring for all of us. LOL! I enrolled him in summer camp last week. He earned it for sure!

Huge update on Jayden

2011-03-11T11:52:00.004-06:00

First thing's first...Jayden hasn't had any visible seizures since JANUARY!!!! PRAISE THE LORD!! We had a followup visit with his neurologist on last week and it was a 5 minute visit! That's just how well he is doing :) We discussed the fact that the reading from his 24 hour EEG was, indeed, completely lost due to a hospital system failure. However, she was able to check with the nurses and they reported no seizures. The hospital is going to give him a FREE repeat 24 hour EEG, but his Dr said that since he's doing so well she wants us to hang on to that and we will use it if his seizures happen to return. But for now, she scheduled him for a sedated EEG next month b/c she still needs to see for herself where his seizures are coming from.

On the medicine front, he is almost completely weaned off of ALL unnecessary medications! He is currently taking 2ml of Trileptal in the AM and 4ml at night. This is a tremendous decrease from the 9ml twice a day that he had been taking for months! We have certainly noticed a dramatic difference in his behavior...at home. At home, he listens so well. Responds with "Yes ma'am.", (still working on yes sir, although he does say it when he's playing military with daddy, lol)and "Ok mommy" and "Ok Daddy." At home, he talks better. Last night he looked in his shoe and then ran from it and screamed "Mommy, a spider!! It's in my shoe!" At home, he is more calm. He can actually sit still and watch a movie without swinging his legs or beating on something the entire time. Last night, he picked out a book to read before bed and it was a Berenstein Bears book. For ages 5 and up, so a bit long. However, he sat through the entire story and didn't wiggle or interrupt ONCE! I was actually preparing myself for him to get bored and when I got to the end I exhaled and congratulated him! He was so confused over the celebration, but last night was epic. LOL! At home, he doesn't have tantrums anymore. Barely gets timeouts. Anything he gets in trouble for is usual 4 yr old boy stuff like not cleaning his toys up or talking back. Also, he is sleeping better!! For the longest time, Jayden was waking at 6:45, as soon as the sun came up. For many kids, this is the usual and I understand that, but Jayden has been sleeping until 8:30-9 since he was an infant. Waking at 6:45 (and many times in the middle of the night as well) was making him very cranky and tired, which added to his behavior issues. Now he is back to sleeping until 8:30 and I'm sure that has had a positive impact on his behavior. At home.

In public, it's still a struggle. Actually, I take that back. It's not in public because he does absolutely fine in crowded stores and he surprised us all on Fat Tuesday in the huge crowds. He doesn't do well in SOCIAL situations. He does not understand how to behave around large groups of children. So of course he is still getting into trouble at school and anywhere else there is a large amount of kids. Wednesday night, my husband brought him to my job while I was at work, to let him play in the childcare room. My husband didn't expect Jayden to act out b/c he had been doing so well. When Jayden got there, there were 14 kids ranging in age from 5-11. They were all over. Jayden does not quite know how to play with other kids, especially bigger ones. other than rough housing. And he gets too rough. He immediately jumped on top of one of the older kids. Then proceeded to grab a toy power tool and "stabbed" the boy with it. The older boy found it hilarious (I guess it is funny to see a little 4 yr old play so rough??) so he laughed and Jayden continued. I pulled him away and reminded him to play gently or he'd have to go home and Jayden said "Yes ma'am" but immediately went back to the boy and karate kicked him. I called my husband to come get him, 5 minutes after dropping him off. It was frustrating for both of us. I later asked Jayden why he didn't listen and he told me "I don't know. I sorry mommy." That hurt me, b/c I know it was the truth. That night, anything else going on in my life was pushed aside. My mind went directly to how I can help Jayden and it won't switch gears until I am able to help him.

I researched behavior charts. I wasn't able to find one specific enough for Jayden and one he'd understand and be excited about, so I made my own:

Jayden LOVES to swim. Summer camp at my job starts at the end of May. They swim 3 days a week. It would be very fun for him to attend and very convenient for me as well, to have him right there at work with me. However, there is no way he can go if he's constantly hurting people and not listening to the counselors. My goal was to get him to understand that in order to go to camp and get to swim all summer, he has to remember to play nicely and to listen to the counselors. On days that he hits, he gets a sad face and he has to remove one of the 4 swimming pictures. On days that he doesn't hit, he gets a smiley face and gets to replace a swimming picture (if any are missing). He gets really excited about the chart. There's one major problem though. It's not going to work for him :(

After researching behavior charts, I also downloaded The Explosive Child, by Dr Ross Greene onto my Nook. I immediately started to read through the first few pages, but as each page described my child to the "T", I couldn't put it down. I remember getting to a certain page and reading something that took my breath away:

"Parent: 'We've talked about this a million times...WHY DON'T YOU DO WHAT YOU'RE TOLD? WHAT ARE YOU SO ANGRY ABOUT?'

Explosive Child: 'I don't know'"

excerpt from The Explosive Child

Just hours earlier, I'd had the exact same discussion with my 4 yr old and I rec'd the exact same response. Greene says in his book, "Children do well if the CAN." He also went on to explain certain skills that are needed in order to go on with each day without being extremely frustrated and explosive all the time. Children with developmental delays (like Jayden) lack many of these skills. Executive skills, language processing skills, emotion regulation skills, cognitive flexibility skills, and social skills. Jayden is lacking every.single.one. Take executive skills, for example. Executive skills include the ability to shift from one mind frame to another. This occurs when you shift from one environment to another. Jayden does not transition well at all and this is why. The book explains a child going from recess into reading class. The child who lacks executive skills will still be loud and unruly in reading class. Totally Jayden :( We already know he is delayed with language and has problems with emotion regulation, cognitive skills and social skills. Since they all are SKILLS, they need to be TAUGHT. Not medicated to make up for the lack of skills, and not rewarded for days that the lack of skills didn't hugely impact the child's day, giving you a false security that your child is "learning".

I haven't gotten to the part where we "teach" Jayden these skills, but I do know that we will need the help of a private child psychologist b/c the one at school is definitely not helping him much at all (I'm also planning to place him in another school in August). My hope is that the psychologist will be willing to watch Jayden in different social interactions and help us to TEACH him the skills he lacks. I don't expect him to learn all of this overnight and I do expect him to still have problems going into summer camp (if I can even trust him to attend), but I do know that I won't stop until he is well on the road to success.

As far as the behavior chart above...I like it and Jayden is SO excited about it, so we will still use it. I haven't read yet that it will hurt anything, just that it won't help him b/c he simply LACKS the skills to do well in social situations. It's not that he doesn't want to do well, it's that he CAN'T. So I have to remember that. But if I can reward him for good days, I will. I am, however, rethinking how I'm going to handle taking away the swimming pictures. If it seems to upset him too much, I will re evaluate. He can't help it and he knows it. He truly wants to do better. Poor thing. But he knows that his mommy will not stop until he is able to do better.

Mommy loves you Jayden :)

WOW!!

2011-02-24T13:08:00.002-06:00

I have so much to update here on the blog, but first I have to brag about my sweet boy!

He hasn't had a seizure at all this entire month, PRAISE GOD!! However, his behavior was spiraling out of control and he was continuously bringing home bad reports from school and they mentioned that his therapists are not able to get through his behaviors during their sessions with him. He's also been out of control in every single social environment. There is no technique we can use to control him at all. We took him in on Friday of last week for an evaluation with the dev. pediatrician b/c we were told that ADHD symptoms show up at age 4. She immediately noticed that Jayden regressed a bit with his language (he NEVER talks in social interactions, only at home), and that his behavior was simply out of control. He was nice and calm when it was just us in the room, but as soon as the Dr entered, he screamed, banged toys on the floor, slid himself across the floor, and made loud animal sounds the entire time. It was very hard to even talk to the Dr, but it was what she needed to see. He quieted down when she talked to him. In a nutshell, she still agrees (even moreso now) that he is NOT autistic and that it is still too early to say that his behaviors are linked to ADHD. From what she saw, his behaviors are attention seeking and impulsive. She agrees that it may be due to the large amount of seizure meds he's been on, but she can't say for sure b/c she doesn't work with medications and side effects. However, she wants to re evaluate him next month after he weans off more of the meds.

I emailed his neurologist yesterday morning and she gave us the ok to start weaning off Trileptal and sent us a weaning schedule. He went down by 2ml, which is a pretty large amount. Today he went to school and when we picked him up, both his teacher and the teacher's aide came out and said "Wow!! Jayden had a wonderful day today! No screaming fits and no aggression at all!" They send the kids home with a behavior report daily with the following categories:

Attended to tasks.
Attended with (visual) cues.
Difficulty attending.

I actually just had to run downstairs to see what the first one was b/c Jayden has NEVER had that report this entire school year. 90% of the time he'd get difficulty attending and the other times he'd get attended with cues and then notes about bad behaviors. Well, we checked his bag today and his form said "ATTENDED TO TASKS" and the teacher wrote in the remarks section "Jayden was so much calmer today!! :) "

WOW WOW WOW!!! We were SO PROUD OF HIM!!! We made a very big deal out of it and took him for ice cream! We called Nana and she congratulated him over the phone. You could see the pride in his eyes :) I'm not sure what the odds are of his behavior turning around that quickly by simply reducing the amount of a medication, but he was on a very high dose, so it is possible. Today could have been a fluke. It could have been a coincidence. But he did wonderful today and it doesn't matter to us why. What matters is that he CAN do it and he DID do it! So today, we celebrate!

We must be crazy...

2011-02-03T12:11:00.002-06:00

Today we are moving. A 3 day process that will (hopefully) end on Saturday. This rental house has mice (along with other issues that we are not willing to live with) so we decided not to renew the lease and found a nicer place on the waterfront. With the death of my grandfather and Jayden being so sick with pneumonia, we contemplated putting off the move until things got better, but that would mean paying rent at two places b/c we already signed the lease to begin on the 3rd, which is today. Besides, who's to say that things will be better by next week? We first wanted to move on the 22nd, but Jayden was sick, so we put it off until the 3rd and now he's sicker. Don't get me wrong, I'm not believing for one second that my baby will still be so sick by next week, but I can see that it's not in our best interest to put off the move any longer, especially with so many friends and family around to help. My cousin has been VERY helpful this week. Keeping my sick baby while I attended classes and Mike was out of town on business. My professors have been so understanding and actually surprised that I still managed to make it to class this week with everything going on. I'm surprised as well. Despite all of the stress in our life right now, if I peek my head outside of this cloudy box, I see an abundance of blessings surrounding me. The Lord made sure we didn't have to endure this alone.

So today we move, mourn, and care for our sick baby (who is doing much better, just still extremely weak and tired). It sounds like a lot (it IS a lot) but we are equipped and ready to take it on. This is the road we have been led to and I pray and trust that it will lead to a better 2011!

In the midst of a storm

2011-02-01T18:23:00.002-06:00

When it rains it pours...

Jayden went to the Dr about a week ago for a really nasty cough and wheezing. He had a low grade temp. He had to get a breathing treatment in the office and was sent home on an albuterol every 4 hours. He had a respiratory virus. Well, the cough never went away and then on Friday he started running a high fever. Tylenol and Motrin would bring it down but within a few hours it would shoot right back up as high as 105.2. I took him to the Dr today and chest xrays immediately confirmed he has pneumonia :( His O2 Saturation was at 97% so the Dr felt comfortable allowing us to treat him at home with antibiotics but if he still has fevers over 100 by Friday, she's going to admit him. He's very uncomfortable and has just been lying in bed all day complaining that his body hurts :(

Also, my grandfather passed away early this morning. Mom didn't want to tell me until I got out of the Drs office with Jayden. That's why she asked where I was when she called me twice before, then told me to call her back. I got the news in the parking lot of CVS. Cried my eyes out :( I was already missing him since last Sunday, which was the last time he was able to actually talk to us. now I'm missing him so much more. It hurts.

However, I cannot doubt that my Lord is carrying me right now. How else am I still able to function? My husband is out of town. I'm on my own right now with a baby who has pneumonia and I just lost my grandfather. I don't have my comfort here with me right now, yet I'm feeling so strong. Thank you, Lord, for carrying me.

Definitely not what I imagined it to be...

2011-01-24T20:07:00.003-06:00

Motherhood, that is...

I knew I wanted to be a mommy since I was at least 7 yrs old. I loved helping to take care of my younger brother. When my older brother left elementary school for middle school, it left me in charge and I was so proud of that!. I started babysitting at 9 yrs old (with mom home) and had my very first official babysitting job when I turned 12 yrs old. Actually, I had TWO of them. I watched 2 little kids, who lived down the street from our house, after school each day and I babysat 2 little ones on the weekends. I LOVED being the caregiver. I couldn't wait to have kids of my own someday (when I was old enough of course!!).

When I imagined what motherhood would be like, I imagined myself and my child singing and dancing together. Reading stories together. Me teaching my baby the alphabet and how to count to 10 in both english and spanish. Going to the park. Weekend trips to the zoo, maybe even on the public transportation bus like me and my grandmother used to do. Going to playgroups. Fieldtrips. Days filled with laughter and smiles.

Jayden and I have done ALL OF THE ABOVE. However, every single one of those things have proven to be difficult for him, and in turn, for me. He doesn't enjoy being sang to. He's finally to a point where I can read a really short story to him, but only on certain days and those days are few and far in between. I did teach my baby the alphabet...he forgot them...he regressed. That definitely wasn't a part of my fantasy. It's hard to go to parks anymore b/c he cannot tolerate the sun, even if it's cold out. The zoo is just a sensory overload nightmare for him. We gave up on playgroups b/c he never fit in and the local playgroup here definitely wasn't as understanding to his behaviors as our beloved playgroup back in MS. We avoid fieldtrips for the same reason we have to avoid the zoo...sensory overload. We DEFINITELY have days filled with laughter and smiles, but we also have our fair share of days filled with sadness, fear, tears and dispair :( That certainly wasn't a part of my childhood fantasy.

Am I sad that it's not exactly the way I expected it to be? Yes.

Would I change anything if I could? Heck yeah! I'd give anything to end my baby's suffering and constant struggle to try and fit in to a world where things just make no sense to him.

Am I envious of the parents who paint this perfect picture of what motherhood in their home is like? Yes, I do. Facebook makes this incredibly hard for me b/c I have several mom friends who brag and boast on how wonderful their kids are. On bad days, this hurts the most.

Am I angry at God for putting us in this situation, after years of battling infertility and praying for a child? No.

Actually, I am grateful. The devil clouds my mind at times and I often catch myself thinking, "Why me Lord?" "Why us?" Then I am reminded that He chose us because we CAN. I wanted a picture perfect motherhood. Jayden needed two strong, devoted parents. God had a plan. It didn't match my fantasy at all. But He knows us better than we know ourselves. Had you asked me, before I became a parent, what I would do if I found out that my child had celiac disease, a chromosome deletion, epilepsy, autistic behaviors, and a host of sensory issues I would have said "There is no way in HELL I could handle that! I just couldn't do it." Heck, you would have lost me at Celiac disease b/c before Jayden, anything that ended with disease was just too much for me to handle.

As I sit here in this hospital tonight, watching my little boy with electrodes protruding from his head while he sits in the hospital bed playing with his action figures, I think of how far I've come. I went from fantasizing about running through fields playing catch, smiling ear to ear, to not even flinching when I tell someone that my child has a disease. Or that he's lethargic and clammy b/c he just had a seizure. Or that he cannot hold a conversation with them just yet b/c he is delayed due to a genetic disorder. It's my life. And I am handling it, even though I would have never believed I could handle something of this extent. Don't be fooled. I have my fair share of bad days. Some days I stay in bed and cry all day. Several nights I don't sleep a wink b/c I'm too busy worrying about my baby's future. Some days I raise my voice more than I'd like to. Many days, I worry too much about what other people think. But in the end, I am succeeding at one thing, and that's being a good mommy to him no matter what.

Sometimes I think to myself "What if motherhood would have been exactly as I'd imagined it to be?", then I realize just how ignorant I would be. I wouldn't understand why any one would want a break from their child. I'd continue to judge those parents in WalMart whose kids pitch fits over the simplest things. I wouldn't have a clue about sensory needs (most kids DO have sensory issues and many parents just overlook them b/c they have no idea). Had motherhood been exactly what I'd imagined it to be, I would take a lot of days with Jayden for granted. Jayden has taught us to celebrate EVERDAY. Not just once a year. We celebrate every single day. We celebrate the smallest of victories like remembering one of those alphabets that he forgot. Or finally being able to CLEARLY say a word that he'd been struggling with. We even celebrate him pointing to a picture and using a sentence to tell what's going on in that picture. At 4 yrs old, people don't understand why we get so excited about things like that but that's their loss. Something they take for granted b/c they have yet to meet a child like our Jayden. What he has taught us is worth more than any perfect picture of motherhood. But there is one thing about my fantasized motherhood that is exactly how I imagined it and maybe even more...just how much he has filled my heart with love. And my UNCONDITIONAL love for him! Thank you, God, for trusting me with one of your most prized angels!!

Torn

2011-01-20T09:34:00.003-06:00

I'm having a hard time lately. What it is is that I'm torn between wanting to protect him with my instinct yet not wanting to OVER protect him. I want him to be able to lead as normal a life as possible, despite his disabilities. But the mama in me will not allow me to release my grasp on him b/c I know that he depends on me to take care of him.

I can usually tell when Jayden is going to have a seizure from the very moment that he wakes up. Sometimes it could be the color of his skin (it would just look dull and unhealthy). Other times it could be the look in his eyes. Or sometimes, he's just very whiny and clingy and yawns a lot. Last week, we got him dressed for school and he was whiny and clingy and his eyes looked a bit droopy. I contemplated keeping him home. However, he was walking and talking just fine so I felt like I was just being over protective. Besides, we had some errands to run in New Orleans while he was at school. So we dropped him off and he went into the cafe with no fight. 45 minutes later (we were already in New Orleans, 30 minutes away from his school) my phone rang. I told my husband, "I bet that's Jayden's teacher." Sure enough, it was. And he'd had a seizure. We immediately got on the road to go and pick him up. He was still out of it when we got there and then slept for 5 hours when he got home. I was so upset with myself for sending him when I knew that he wasn't ok that morning.

Well, this morning I questioned bringing him. His skin looked fine, his eyes were fine. He was only slightly whiny. But he was taking very small steps and just not really "with it" this morning. I asked him if he was okay and he said yes. I contemplated keeping him home. But then I had to rethink that because he missed school yesterday to go to the Dr. So, after him making me chase him through the house to put on his jacket (and he laughed the entire time!), we got in the truck and headed to school. He's been there for over an hour now and still no phone call, so that's a great thing.

But how do I handle this. How do I keep my mom instinct from sheltering him. And then how do I overcome the guilt when I ignore that instinct and then something goes wrong?? UGH.

Prayers for Jayden please

2011-01-18T17:11:00.001-06:00

As you know, Jayden's been going through an extremely long weaning process to get him off of 3 different medications that are not working for him and on to one single medication. First, we started by weaning him on to the one medication he will be taking (if it works for him). He had been doing well with the weaning. A few behavior issues here and there, but no bad issues like increased seizures. I think he's had 2 seizures since the 4th.

Anyway, I've been keeping a daily journal during the process. We increased his dose of the Zonegran on the night of the 15th. Yesterday, the 17th, I went to update his journal for the day and when I was logging his behaviors I noticed there was nothing to report for that day b/c he didn't really do much but lounge around. Of course I won't complain about that b/c we all need that time to regroup! However, he took a really short nap and had a very hard time falling asleep last night. Then this morning, he slept in until 10:10 (he had usually been waking up at 7:30 each morning). I peeked in on him a few times b/c I get really nervous when he sleeps late. At 10:10, he woke up and called for me. I climbed in bed with him and we laid there snuggling and hiding under his covers "from the monsters". Then he said something that I couldn't understand so I asked him to say it again. He struggled to find the words (which he usually doesn't do) and then said "I have to pee pee." I really was not worried about him at all at this point. It was still just a typical morning for us, just with a late start. After he went to the bathroom we went downstairs and I gave him his medicine and he sat at the table and was waiting for his late breakfast/lunch. While I was fixing his sandwich he had a dazed look to his face and he kept asking me for his "mama". Just for reference, he does not call me mama. He calls me mommy. And I know that kids "grow up" and start saying mama b/c it's cooler ;) but this wasn't the case. He wasn't asking for me b/c I was right there and he was still pointing across the room for something else called "mama". I kept asking him what did he mean and he would just repeat "I want MAMA!" and he was getting very upset b/c I didn't understand. My husband came downstairs and Jayden said "Daddy, I want mama." My husband told him, "Your mama is right there." He started crying "No I want mama!" and pointed to our room. My husband took his hand and told Jayden to show him what it is he wanted. We haven't had to do that with him since he was 2 yrs old :( So he led my husband to our bedroom, over to my side of the bed, and pulled back the sheets. Then he said "Mama's gone!" Mike came back in the kitchen and said, "Nia, I think he didn't know who you were for a second." We asked him where is mommy and he got a little frustrated but soon enough, he pointed to me. It hurt my feelings a little but I figured he was just still very tired or something. Well after he ate he continued to talk but much of what he said made no sense. It's hard to explain, but he wasn't babbling which he does a lot when he's playing with toys. He was actually holding conversation with me, but none of it made any sense. He called the front door a "baba". Then, after 2 hours of being awake, he fell asleep on the couch. I didn't want to over react, but I sent a quick email to the Dr (I'm so grateful that she gave me the ability to be able to reach her) with my concern. She immediately emailed me back and told me to bring him in tomorrow morning.

My guess is that he's having a different type of seizure that is making him very tired and confused. I'm definitely ready for him to be well and catch a break! Please keep him in your prayers!

Just because I never want to forget it...

2011-01-12T20:39:00.003-06:00

I've been working part time at our gym since November and on the nights that I work, I don't get off until 8 or 8:30. Usually when I get home, Jayden is just getting out of the bathtub (we let him stay up a bit later when I work so that I can still say prayers with him and tuck him in) and he comes downstairs to see me. Well last night I worked and his daddy wanted to work out so Jayden ended up in childcare at the gym while I was working. I wasn't in the childcare room, though, I was with the infants. But he was able to see me, talk to me, and kiss me over the half wall. When Mike came to get him, he asked to listen to "dancing" which is what he calls the MP3 player. So he was so preoccupied with listening and dancing that he forgot to tell me goodbye and didn't hear me when I yelled goodbye to him. So I think that is what warranted the dramatic welcome home I got from him when I made it home.

I came in and I heard him getting out of the tub and saying "Mommy? Mommy home? Mommy?" He came down the stairs, smelling fresh and looking so cute in some new pjs. He looked at me and his entire face lit up and he yelled "Mooooo mmmeeeeeeeee!!" Then he took off running, all the while shouting "Mommy Mommy Mommy Mommy!!" straight into my arms!! I picked him up and he started kissing me all over my face and hugging me. WOW!! I loved every minute!! Then he just hugged on me and smiled :) So glad that even at the age of 4, he is still a mommy's boy!

A quick update on his health: He had a little bit of seizure activity on Sunday morning but nothing major. However, he had a pretty bad one at school today and he slept for half the day. Once he woke up he was fine. He will be admitted to the hospital on the 24th for his video EEG and we will go from there.

Appointment with new neurologist

2011-01-04T19:45:00.002-06:00

So, finally, after exactly 2 LONG months of having no neurologist at all for Jayden, he had his appointment with the new one over at Children's hospital. Of course, it wasn't smooth sailing, although I'm beginning to believe it's some sort of Johnson family omen. Or perhaps the devil trying to see just how hard I am willing to fight for my son. Long story short, Jayden's Tricare referral got lost in the shuffle of paperwork and daily faxes. New Orleans is very low on pediatric neurologists so the offices are jam packed. That's when you have to depend on those computer systems. However, in order to depend on one, you gotta know how to USE one! The receptionist at the neurology clinic asked me to call the general pedi to get it faxed over. The nurse over at the pedi's office couldn't locate the referral for the Dr we were scheduled to see. Instead of returning my call, she just didn't do anything. I called twice and the receptionist called the 3rd time. Still no referral. The neuro nurse called and the nurse at the pediatrician's office told her that we didn't have a referral to see Dr. C, it was for another Dr. So the nurse came out and told us that we were scheduled to see the wrong Dr and that we'd have to see Dr. M next week. Oh hell no!! See, we were scheduled all along to see Dr. M this morning at 10am. When Jayden was discharged from the hospital last week, we rec'd a call from the clinic stating that we should not come to the appt to see Dr. M at 10 and instead take him to the Metairie clinic to see Dr. C at 2pm. I immediately called the general pediatrician's office to check on the referral and she checked the system and saw that he did indeed have a referral to see Dr. C and she faxed it over that same day. That's the referral that was lost somewhere. So I pitched a fit. How dare they even think of sending us home to wait ANOTHER 7 DAYS to get my son seen b/c of a mistake someone in their office made. I understand that the nurse and the office manager's hands were tied, but unfortunately, they had to be a sounding board. I actually had to just say "Let me walk out of here before I go to jail." b/c I seriously felt like punching something. I snatched my cell phone and called the pediatrician's office and demanded to speak to the nurse. The receptionist said she could take a message but I said "No. I've left 3 messages and now the neurologist is about to cancel my child's appointment. I need the nurse on the phone now." I was put on hold for about 3 minutes and then the receptionist comes back on the phone and says she has a referral for Dr M. I said, he also has another referral which is for Dr. C. She goes through it again and says she sees one for Dr. A. No, that's the Dr who we are no longer seeing. She looked again and said "OH!! HERE IT IS!" OMG. I headed back inside and asked that receptionist to grab the nurse and they hounded the fax machine and finally, at 3:45 (his appointment was scheduled for 2), the referral came through. Lord...

So, anyway, I walked in there feeling bad about the way I had to act in order to get him seen, but hey at least he was finally being seen. And the best thing about it all...Dr. C was totally worth the wait. Yeah, I know I could possibly be jumping the gun, but I had a bad taste in my mouth for the previous neurologist from the very first visit and less than a week later we were looking for a new neurologist. Dr. C apologized for the referral issue and went to work getting Jayden's history and the names of the medications that he has tried and the ones that didn't work for him at all. The Dr told us that there are still several medications available that we can try him on (which was a relief b/c the last Dr told us that his chances of having his seizures medically controlled were slim...ugh)and we still have several options before having to pursue surgical options. She wants him to have a 24 hour video EEG done soon. She's adjusting his medication and going to attempt to eliminate the ones that he's taking that are simply not helping at all. We discussed the benefits of a vagus nerve stimulator so that we will know that it's definitely an option for Jayden should the medications not work for him. She told us "We are not going to give up on him. We will stop the seizures or work on reducing the frequency b/c it CAN be done, we just have to figure out how."

Before we left, she gave me her PERSONAL email address b/c she simply does not rely 100% on her office staff b/c they are not 100% reliable (example #1, the referral.) She wants me to keep in touch with her via email while he's weaning on to the new medication and to keep her posted on any abnormal reactions. She told me that her emails go straight to her phone and she checks it often. That is so very reassuring to me, you have no idea. She recently completed her residency over at Tulane so she worked with Dr. Nelson (our 1st WONDERFUL neurologist who relocated) and his wonderful nurse Marc and she mentioned how much she misses Marc b/c he was an excellent nurse. To which I agreed! I still call Marc when our backs are up against the wall and even though Jayden isn't his patient anymore, he does what he can to help! I told her I believe Marc spoiled the both of us, lol! Before we left, I apologized to the nurse once again about getting so upset in the waiting room and both she and the Dr chimed in and said "Oh don't be sorry!! That's your son and you are going to fight for him no matter what. We understand." Thank you Lord. I needed to hear that SOMEONE understands b/c for 4 long months we dealt with a Dr that simply did not understand and didn't care to try and understand. I'm so glad we are starting the new year with a new Dr and a new outlook.

We're home

2010-12-27T15:24:00.002-06:00

and doing well :) Jayden was discharged yesterday afternoon with a new medication added to his current two, in order to help decrease his seizure activity. The attending neurologist (who was awesome BTW) told us that he did need to have an additional medication added immediately and then it could be changed if needed once his new neurologist runs any tests she needs to have in order to get him on the correct medications and the best dosage. We also have to bring him back sometime this week for another EEG, more than likely a video EEG. He's been compfrtable at home for the most part, although he does have little moments where he looks like he thinks he's about to have a seizure so he just wants to lay down. I'm pretty sure he's still having some activity, but it is not as bad as last week. Last week was pretty awful. He would scream and cry for help for 6 or more hours. And during this time, he could not eat so he was very miserable and so were we.

When we got home yesterday, Jayden was pretty out of it b/c the new medication makes him very drowsy, but when he saw that Santa came, he ran over to his gifts which included lots of learning toys, some action figures, legos, a board game, a powerwheel, and a new Spiderman Helmet. We expected him to run straight to the powerwheel and not care about anything else but we were SO WRONG! He did run up to the powerwheel, but only to grab his spiderman helmet and beg for us to open it. He refused to open anything else until the helmet was free from the packaging and strapped on to his head. Then he continued with ripping his gifts open. Classic Jayden :)

Merry Christmas

2010-12-25T12:45:00.002-06:00

from the hospital :(

Jayden continued to have seizures throughout the day yesterday and was extremely miserable. We had to use his rescue medication on Thursday to stop seizures but they started again 2 hours later. Yesterday evening we decided to bring him in to the ER to see if they could stop the seizures. Well the seizures stopped on their own by the time we were called back, but Jayden was still very wobbly and uncoordinated so they decided to admit him and try to get him stable until his appointment on January 4. They started a new medication and he did well through the night and was doing great this morning. He even had the cutest surprise visit from Santa. The Dr examined him and was happy with his progress. She wanted to order an EEG but the soonest it can be done will be Monday. She decided that instead of keeping him here until Monday, she'd let us take him home so we can enjoy the rest of Christmas at home. We would have had to bring him back on Monday for the EEG and we were fine with that. Just as they were finishing up his discharge papers, he had a seizure. The Drs came in and tried to wake him (he immediately fell into a deep sleep), but he wasn't responding, not even to pain. So they paged the neurologist and she ordered more IV meds and monitoring. He will be re evaluated at in 3 hours. Right now he is resting. It's bittersweet. We were THIS close to heading home. However, I would have been very upset if he would have been discharged only to get home and start seizing again. He's where he needs to be right now and the hospital staff has made sure that his Christmas is just as enjoyable here as it would have been at home! So far Santa has brought him a Handy Manny cell phone, Mr. Potato Head, a musical train (with tracks!), and Candyland! What's funny is that these are ALL his favorites!! Funny how Santa got that all right huh? Thank you Lord. I know you are listening.

Double Edged Sword

2010-12-23T14:55:00.003-06:00

Yesterday evening, I rec'd a call from the nurse practitioner that Jayden was supposed to see. Unfortunately, we had to cancel the appointment b/c Tricare wouldn't approve the office visit or any tests that she ordered since he was not an established patient with any of the affiliated Drs. The medical insurance obstacles. Well, she wanted to see if there was any way that she could help over the phone, as she had heard about Jayden having complications and no neurologist to turn to for help. She asked for some detail and thought really hard on how she could help and what else I could do to get him through until January 4. Unfortunately, the Dr that he's going to be seeing is out of town and won't return until January 4, so that's why he cannot be "worked in" on her schedule, however, the NP told me that she'd make some calls to see if he can possibly get in to see one of the partner Drs prior to the appointment on the 4th. She said "No promises", but I'm truly not asking for promises, just for someone to show some concern for my son and to actually help us. And she's doing just that.

We talked for about 20 minutes and after giving her a brief history along with the current medications and dosages, we both came to one(possible) conclusion: The Trileptal could be causing the seizures to get worse due to the extremely high dose he's on since it's being used as the sole seizure medication right now. I always wondered if that was the case b/c there have been multiple occasions when Jayden would have seizures immediately after taking his medicine. I do not plan to stop this medication without first seeing the new Dr (neither did the NP encourage me to stop it) because I know that could very well make matters worse.

Today has been a pretty bad day for him today. He was having seizures this morning so I put him in bed for a nap to see if that would help. He only slept for an hour (he usually sleeps 3-4) and he came downstairs and immediately started having the seizures again. He's very uncomfortable right now and I'm just hoping we can avoid the ER tonight...

We'll be home for Christmas...

2010-12-22T14:03:00.002-06:00

And probably miserable :(

Jayden tested positive for the flu this morning...We had to skip the flu shot for him this year b/c his seizures were not controlled. I have no idea why things are so bad for him right now. Why can't he catch a break. It just seems like a nightmare that I cannot wake up from. He's still having seizures everyday and b/c of that, the Dr decided that it was best for him not to take the Tamiflu b/c it does have seizures as a side effect. She warned us that his seizures will increase b/c his immune system is fighting off the flu. So that will mean multiple seizures a day. My poor baby. We have to keep a close eye on his temperature and just try to keep him comfortable, but otherwise it has to run it's course.

A wonderful day =)

2010-12-19T19:25:00.003-06:00

While his seizure activity is still extremely high (he's had 7 in the past 3 days and we ended up in the ER again on Friday night), today he has been seizure free and behaving so well!

This morning, I noticed a spark in his eyes. Life in his face. I kept looking at him trying to figure out what about him looked so different, but the only thing it was was that his face was suddenly filled with life. Filled with life as opposed to having a drugged out look. Sad, sleepy eyes and cheeks hanging low. Zero life in his eyes. Today, I saw a face that I haven't seen since his birthday and birthday party on Dec 4. I didn't realize it until I saw it today. And his little personality just shined today. He helped to clean up. He took directions so well. He understood and comprehended things that we didn't think he'd known well before this seizure activity started. Everything he said today, it was said in sentence form. No babbling or screaming while playing with his toys. Instead, he was repeating every thing that his talking Spiderman toy would say. We also caught him singing a song from Polar Express. Once he noticed us watching and smiling, he got bashful though :) We also were brave enough to take him out to Target knowing full well that all of this could change in a brief second right in Target's parking lot. But he walked into Target and got into the basket and sat there like a big boy. He's usually one to ask for every thing in sight and I had to stop at the video game section to grab a game for my nephews for Christmas. To get there, we had to pass the dreaded toy section. Jayden looked on very quietly, and even when we passed up the huge Toy Story shelves, he never screamed "I want that! I want that! I want that!" I seriously looked at Mike and said, "Wow, I'm impressed!" It's as if he knows Christmas is next week. LOL. We got into the checkout line and he saw his favorite piece of candy and he said "Mommy, I want this." He'd been so good in the store so I told him he could get it and he actually put it on the counter so the cashier could ring it up. Normally he pitches a fit if anything leaves his hands to be rang up. She rang it up and gave it back to him and he said "Thank you. Merry Christmas." WOW! I couldn't wipe the smile from my face. I was so proud. All evening, he's been soooo good. He even ate all of his dinner.

He hasn't gone to bed for the night yet, so I do know that this perfect day could take a turn at any unpredictable minute. But for now, I'm logging off so I can go look into those beautiful, sparkly eyes of his before he goes to bed for the night. I want to soak it all in because days like this have not been happening often around here! Thank you to all of my blog readers who have been sending prayers, advice, links, etc. I appreciate it all :)

ETA: I do feel that this is just proof that Jayden is definitely capable of doing well, behaving well, and learning well. The last neurologist told us that she thinks that the bad behaviors and learning issues are just "who he is". I disagree and feel that they are directly related to his seizures b/c when they were controlled, he was ok. Today was that ray of sunshine that tells me that he will be okay.

Always without warning...

2010-12-16T21:45:00.003-06:00

We needed to run out to Sears tonight to price some ranges for the kitchen at our property in Jackson. We made sure that Jayden had his bath, dinner, and medication prior to leaving in hopes of avoiding a seizure b/c he hadn't had one all day and we still haven't verged off of this daily seizure road just yet. He was in a good mood. Talking on the phone to Santa and running about singing songs. We got in the truck and he put himself into his carseat. A song came on the radio that both he and I like so we started singing that. When we pulled up to Sears and Mike turned off the truck (causing the song to stop), Jayden told him "turn it on!". When the song went off, we all proceeded to get out of the truck. Jayden climbed out of his seat and walked over to the door so I could get him out of the truck. As soon as he jumped down, he was begging me to hold him. I thought he was just being a little lazy and just wanted to be carried so I joked with him and said "You are half my size. Why don't you hold me?" He kept insisting "Hold me Hold me Hold me!" I didn't pick him up (which is now breaking my heart) so he turned to his daddy and pleaded for him to hold him. Mike held his hand and we continued to walk through the parking lot. Jayden was whining so I reminded him that Santa is watching. Jayden shouted back at me "No!" I asked, "So you don't want Santa to bring you any toys?" He shouted "No!" I said, "Well that's not nice of you so you need to stop shouting at mommy ok?" and he said "Yes ma'am" By this time we were in the store and he just kept whining. I reminded him that we were stopping for ice cream after the store so he needed to behave. Then he looked up at me with the saddest eyes, filled with tears, and said "Mommy, I scared!" This is always our clue that he's about to have a seizure so I immediately picked him up and tried to help him to slow his breathing b/c hyperventilating can bring on a seizure. He relaxed for a minute but then the seizures started, right there in the appliance section of Sears. The associate gave me a seat and I had to take off Jayden's jacket and his shirt right there in the store b/c he overheats when he has the seizures. He screamed and grabbed at the back of his head and yelled "Mommy!!" It was awful. We couldn't leave until the seizure was over, so I sat there consoling Jayden and my husband was able to get help from the associate (while taking several breaks to come check on Jayden). The associate offered a glass of water b/c when the seizures stopped Jayden was pale and sweaty. Unfortunately, he never became alert enough to even drink the water. We did get him to answer some questions though and to tell us his name, so he was conscious. We carried him out to the truck and put him in his seat and he said "Mommy? I sleepy." I told him he could go to sleep and he sure did. It was his bedtime when we got home so I decided not to arouse him and just tuck him in. He was awake by then, but very very groggy, and he was able to help me take his clothes off. He told me goodnight and I love you. As always, the monitor is on in his room.

This is our life. It can go from being a very good day to being a horrible day in a split second :(

MRI and new neurologist

2010-12-14T18:53:00.002-06:00

Jayden had his MRI done this morning and this time they used contrast so they could get a better look at his brain. The last MRI was done without contrast. He was such a trooper and even went back with the anesthesia nurse without a fight or fear. They told us that he did well but we have to wait to hear back from the Dr for the results. That part sucks :(

After the MRI, we went to Children's Hospital emergency room. Why? Because yesterday I left a message with his current neurologist about the daily seizure activity. Instead of getting a call back from their office, the hospital's patient relations representative called me. She said "We advise you bring him to Children's Hospital." I was so confused by this that I never asked why, so I just took him. Those ER docs were just as confused as we were, but they refused to release Jayden until something was done to keep him from having to endure daily seizures until January 4th which is his scheduled appointment with the new neurologist at Children's Epilepsy Center. After almost 2 hours of waiting (and several phone calls placed by the ER docs) we have an appt to see the nurse practitioner at Children's Hospital next Wednesday and an on call neurologist agreed to advise us to raise his dosage of his current meds b/c, simply put, the seizures have to stop before damage is done. Keep praying for Jayden!

Journal post

2010-12-13T13:44:00.002-06:00

Jayden had a cluster of seizures this morning, right after taking his meds and eating breakfast. Breakfast wasn't anything new or unordinary so I'm sure it wasn't an allergic reaction induced seizure. I calmed him down on the couch and he went into a very deep sleep for an hour. He woke up and has been alert and talking, but has not moved from the couch since this morning. I've tried coaxing him off the couch to ride his bike or play some games but he won't move, and it has been 4 hours since the seizure. This is a child that is usually climbing the walls, so he cannot be feeling like himself.

I left a message for the current neurologist, at 9:30am, stating that my son has been having seizures EVERY DAY since Sunday of last week. I'd consider that an urgent matter. It is now almost 2pm and I haven't received a call back from the office yet.

Heartbreaking update :(

2010-12-12T12:23:00.004-06:00

My poor, sweet Jayden is just not doing well lately. We saw the signs. I guess I should say we expected this to happen once the current neurologist screwed up his medications. A little refresher: Jayden was on 2 different seizure medications prior to being seen by this current neurologist (he also very frequently had to have a 3rd added when his seizures were out of control) and he was still having at least one seizure a week, from what we were seeing. Well her treatment plan was to wean him off one of his meds and start another. He reacted to the one she started him on and she (not so happily) agreed to take him off of it but never replaced it with anything. So now, he's on only one seizure medication. One that has NEVER worked for Jayden on it's own. She does have him taking 1/2 of a tranxene at night to calm his spikes that occur right before he falls asleep, but nothing to protect him throughout the day. At his last appt with her, which was over a month ago, she told us that she fully expects the seizures to return. She also said some other rude things to me and about my child and simply suggested a behavior evaluation and a psychiatrist. She was supposed to call me back that same day with referrals but it's over a month later and I haven't heard a thing from her.

For a few weeks now, Jayden's teacher has been meeting us outside at pick up time telling us that he is just not behaving well at all. He's hitting other students, hitting the teachers, and spending most of his day in time out for not listening. If he's spending most of his time in time out, then he's not receiving his therapy. I know they try hard with him, but I also know that Jayden has not been cooperative at all lately. Last week, his teacher told me that she's concerned b/c it's a personality change. We've had a very difficult time at home with him as well. He is going completely backwards. Honestly, I feel like we are back to those days where we were so frustrated with him and were beating doors down trying to find out exactly what is wrong with him. He no longer makes eye contact. He screams at the top of his lungs again. He breaks EVERYTHING that he comes in contact with. He cannot sit still for even a second. He's not sleeping well. I've seriously considered begging a Dr to give him something for ADHD. It's gotten just that bad and this is EXACTLY where we were prior to the epilepsy diagnosis. Yesterday was THE WORSE.

I had to work. Mike had to work. My mom had a Drs appt and my dad is still recovering from a knee replacement. My job is wonderful in that I can bring Jayden with me anytime I need to. What's not wonderful is Jayden's behavior lately, whenever he attends. He does not listen to anyone, including me. I had a talk with him before we left and he agreed to be on his best behavior but I knew something was wrong b/c he was clenching on to his blanket and on a good day, Wayne is usually left in his bed all day. Then as we walked out of the door Jayden said "Mommy, I scared." Oh man. This is what he says before a seizure. I texted Mike and warned him that he may have to come get Jayden as soon as he gets off. We got to work and Jayden played for about 5 minutes before he started whining. Then he asked to sit down. Then his eyes got glassy. Then he started the high pitched screaming. His siezures were started. One little girl in childcare said "Oh he's really attached to you!" and the other childcare workers were just walking past him as if there was nothing going on. His seizures are not your typical falling to the floor and jerking around violently. His are quick tensing of the body and loss of equilibrium. He gets extremely dizzy so he clings to whatever is close to him. In this situation, it was the table. I was trying to calmly move him and ask the other workers to help me, but they didn't realize that he was seizing and that this was serious and I needed help. When I said he was having seizures they'd look over like "Really?" but then do nothing to help. I couldn't waste time explaining to them b/c I had to help him so I carried him and grabbed a kindermat and slowly laid him on the floor as he screamed b/c laying flat while you are very dizzy is not easy. He hyperventilated for a minute and I just hugged him real tight until he calmed down. He screamed and whined for about 15 minutes. I ended up moving him to the baby nap room and putting him in a crib. It's cool, quiet, and dark in there. He actually laid in the crib and said "Wooo, thank you!!" Bless his heart! I let him lie down for a few minutes and after about 10 minutes he was climbing in and out of the crib so I knew he was ok. I took him out and he sat with me for a while then asked to go play with the bigger kids (I was watching toddlers). I agreed, but I warned the girl that he'd be extra difficult and probably wouldn't listen well so she could send him back to me. He immediately went over there and started throwing toys, hiting kids, and just not listening, He couldn't make eye contact. It was awful. This was not Jayden at all. Everyone always comments on how well he listens, but yesterday that wasn't happening. The girl sent him back to me. I tried putting him in time out (which he usually goes without a fight) he slapped me, kicked and screamed at the top of his lungs and fell out all over the floor as if something was wrong with him. It was awful. I tried to get him to look at me and he wouldn't. We went in the bathroom so I could try to calm him down and he attacked me. Who WAS this child?! My heart was broken :( He proceeded to break two big toys in the toddler room by throwing them down on the floor. He was OUT.OF.CONTROL. He was being very mean all day. Mike got there to get him just as I was giving him his lunch so we agreed to just let him finish his lunch then he can go home with Mike. He finished his lunch and put on his jacket and I tried explaining to him that Mommy would be home a little later and he was going home with Daddy. He wasn't listening. Instead his eyes darted from side to side. He was pulling his arms away from me. He moved his body all around and paid no attention to a word I said. When he walked out and I closed the door behind him he screamed and hollered to the very top of his lungs. I heard him screaming all the way to the parking lot. I felt sorry for Mike :( I later found out that the entire scene looked as if Jayden was being kidnapped. He kicked and screamed and clawed at Mike. He bit and hit. And when Mike picked him up, Jayden tried to claw Mike's eyes out. Mike couldn't even sign Jayden out, another of my coworkers had to do it. Not only am I humiliated, but I'm hurting for my child. This is not him. He is suffering. I came home and all I could think of was how bad I want to yell and scream and punch out the Dr who has neglected him!! She deserves to suffer the way she has caused my baby to suffer. The way she has caused my family to suffer. It's awful and no one can comprehend how hard this is for us. I'm so glad I have my family to reach out to and to vent to in hard times, but I think that, unless it's your child, you will never fully comprehend the pain and anger that goes into it.

He is certainly back at square one. I know I can look back on this blog alone and see where things were just as difficult in 2009 prior to the EEG findings and started him on the seizure medications. Once Jayden was started on meds for seizures, his prognosis was WONDERFUL. One thing that stands out the most to me, though, are the results of his appts with the developmental pediatrician and the timing of him being started on anti seizure meds. You can read about his first evaluations here and here. And can I just take this moment to say that the second eval post is proof why you should NEVER trust a Dr's opinion over your own mommy instinct. In his "opinion" Jayden was typical and appeared to have no genetic disorder. If you are a followers of this blog, you know that Jayden has since been tested by a different genetics Dr and is missing a piece of a chromosome so he does have a genetic disorder associated with autism. Anyway, those evaluations were done prior to the start of the seizures medications. In August, we went to Florida and noticed strange behaviors so asked for an EEG which came back abnormal. He was started on one medication which was soon increased once the seizures got worse. Then he went back to the developmental pediatrician in June of this year for a follow up. You can read that here. It's in the 2nd paragraph or so, but as you can see, he had made a complete 180. He improved enough to where the Dr no longer felt the PDD-NOS diagnosis was even warranted. Now, though...Now, I believe he would be diagnosed with even more than PDD-NOS. He is right back to where he was prior to the first evaluation. Since he has a history with this Dr, I think it is important for us to followup with her for her opinion on this matter. I'm waiting for a nurse to call me back on Monday to get him on to the February schedule. He also has his first appointment with the Epilepsy Center at Children's Hospital on January 4. It's still a while a way, but it's closer than it was 2 months ago. He's also having another MRI done at the hospital on Tuesday. This was not ordered by the current neurologist (since she believes it's "just who he is" and nothing to do with the epilepsy) but by his geneticist who is extremely concerned with extreme regression and behavior changes. Please keep Jayden in your prayers. Thank you all!

ETA: I want to apologize in advance bc/ I will also begin using this blog as a daily journal now until his appt with the Epilepsy Center. He's been having multiple seizures daily so I need to keep track of them and his behaviors. We are also getting daily video footage b/c I want to be armed with information. I need this Dr to be able to help save my son.

Loving my new job

2010-12-06T23:04:00.003-06:00

Not only are the hours magnificent, and the fact that I can bring him with me when I need to (he's coming with me on Saturday), but I am learning so much and this job is actually helping me to be a better mom to Jayden. We are the ONLY gym that requires childcare workers to actually go through ongoing training. So I'm also getting PAID tp attend child development courses and training. So much I've already known, but I cannot begin to tell you how refreshing it is to know that they are teaching the workers about kids and how every kid is different. Don't judge the children by their behaviors. Bad behaviors does not equal bad child. Give choices. Redirect. Intervene. Help develop self esteem. Sometimes, when you've had a rough parenting week, you forget about the little things you could (or should) be doing to help nurture your child. These training classes are grounding me and putting me in a place where I can see what we are missing and what Jayden can use at this time.

Also, I'm making wonderful connections. Tonight I met a lady who used to be a play therapist. She has my email and will be sending me some information for Jayden. She also gave me information for a local autism support group. At this point, Jayden won't be able to attend the weekly support groups (b/c they meet when he's in school) but I can go to meet the parents and make more connections. A friend of mine told me that this may be my calling. I can notice when a child is just a bit different from the others and is trying to fit in. I tend to pay close attention to that child and help to make him or her feel more comfortable for the 2 hours they are with me. Before they leave, there's always a smile where there was once a frown. That alone, makes my time away from home worth it!

4 years old

2010-12-05T12:20:00.004-06:00

This should have been posted on yesterday, but I was too busy getting everything prepared for his Spider man party (which was perfect in every way! Pictures coming later).

4 years ago, Jayden, you changed our lives tremendously. You were the single answer to years of prayers. We could not believe that you were OUR SON! We have learned so much from you in these four years. We've endured things that we never imagined we'd have the strength to endure. So many people say that you are lucky to have us as your parents, but honestly, I think we are the lucky ones!

I absolutely adore your personality. You have such a zest for life and you love to make everyone around you laugh. Such a caring spirit. You can tell when someone in the room is not happy and you always make sure to ask, "What's wrong?" or "You okay?". You always want to be sure that everyone is happy and enjoying their life to the fullest, just the way that you do! I love that about you. You never let your medical condition come in between your love for life. You go through so much yet you always bounce back as if it was nothing. You are never afraid to try something new. It's definitely something that you have taught me, to never let anything get in the way of my dreams.

This year, you are totally into super heroes of all kinds, but mainly Spider man. Last year, it was a toss up between Buzz Lightyear and Spidey, but this year you have been 100% Spider man! You were star struck when you saw Spider man at Universal Studios in Orlando this past summer. You were Spider man for Halloween this year. And, once again, you were star struck when Spider man made a surprise grand entrance to your birthday party on yesterday. The look on your face when he arrived on the roof of a truck immediately made his visit worth every cent!

You have come a long way, Jayden. Although you still have a delay in your speech, you can now put your thoughts into sentences on your own. Without any help! This is huge for you! Yesterday, during breakfast and one of your favorite restaurants (IHOP), Daddy tried to help you with your syrup when you told him, "No. I want to do it myself!" We both were so proud of you and we told you so and made a big deal out of it right there in that restaurant. At 4 yrs old, most parents would wonder why it was such a big deal to us. But there's another thing that you've taught us, Jayden...To celebrate even the little things in life.

This morning, you had a bout of scary seizures. You clung to me for help, told me you were scared and pleaded over and over "Help me, please!" 4 years ago, I would never have imagined that I could ever help you the way you would need to be helped. Instead, I could only imagine myself breaking down, crying in a corner somewhere, too weak to help you when you most needed it. Today, I am strong enough to hold back the tears and hold you tightly while reassuring you that is IS going to be okay. I have you and I won't let anything or anyone hurt you. I will fight for you until there is no more fight left in me. You are my little fighter. My brave, super hero. My daring boy. My silly son. My charming little boy. Mommy and Daddy love you forever and always!

Day 30!!!

2010-11-30T20:57:00.002-06:00

I am thankful that I am alive and well enough to spend an entire month telling the world what I'm thankful for each day! I hope to see many more blessings :)

Goodbye November, Hello December!

My baby will be FOUR in 4 more days!!!

Day 29

2010-11-29T19:54:00.001-06:00

Today I am thankful for my warm, cozy bed and Tylenol Sinus. Still sick :(

Day 28

2010-11-28T21:45:00.001-06:00

Today I am thankful for Chamomile tea! I've already caught a cold from the kiddies at work!

Days 26 and 27

2010-11-27T11:51:00.002-06:00

I am extremely thankful for my acceptance into Nursing school!! I knew my grades were good enough to get me accepted into the program, but since it's a limited entrance program, I wasn't sure that I would make the cut for next semester, but I did!!

In August, 2005, I had just started my final year in Nursing School. I was on the honor roll and loved my instructor. I was preparing myself for my board exam. I was so excited to finally walk across that stage and receive my degree. My Maw Maw was excited as well b/c she knew how bad I wanted this, yet how long it took for me to be in the position to afford it at all. Then, Hurricane Katrina washed it all away when the waters came in and flooded my city and my school. Of course, life turned upside down after Katrina. 3 moves in less than 2 months, no clothes, no furniture, and miles away from loved ones. It was rough. It was stressful. Then things turned around for us and we adopted Jayden. My plan was to start school again when Jayden was a yr old, but then his health issues surfaced. Finally, this past summer, we realized that now was a good time to "try again". When I tell you that EVERY.SINGLE.DETAIL. worked out in my favor, I mean that!. First off, I contacted my counselor just in time to schedule my entrance exam, as there were only 4 testing dates left before the deadline to apply for nursing school admission for Fall 2011. Also, I was just on time to figure out which pre reqs I needed to retake and to enroll for them this past August. ALSO!! We were able to use my husband's post 9/11 GI bill for my tuition! 100% tuition paid and a $250 book allowance per semester! How wonderful! And as if that wasn't blessing enough, I now have this job and childcare for Jayden at only $3.50 per hour whenever I may need it. God is good!!

Unfortunately, Maw Maw passed away in 2007, so she won't be there to see me wakl across that stage but I know her presence will be felt on that day! I love you Maw Maw!

Day 25

2010-11-25T13:17:00.002-06:00

Today I am simply thankful for LIFE! No one is promised tomorrow and I have a handful of friends who are spending their first thanksgiving without a loved one. Learning not to take life for granted is not a simple feat, but I encourage you all to give your loved one a HUGE hug and kiss today before devouring your turkey dinner!

Happy Thanksgiving everyone!

Day 24

2010-11-24T21:40:00.002-06:00

Today I am thankful for the knowledge God has provided me with and the lessons I've been taught by my very own son! I started my new part time job today in the youth activity center at our gym and was saddened by some of the comments made (or eye rolls) by the workers towards some of the kids and their behaviors. I am not ashamed to admit that I would have been one of them prior to Jayden. I was ignorant towards the different ways that kids develop and the different issues that many kids deal with today. I now understand that what works for one kid does not work for all. I've learned patience and understanding. And what I've learned most, out of everything, is that each kid, no matter how well behaved (or not), deserves just as much love and respect as the next.

Days 20, 21, 22, and 23!!!

2010-11-23T10:55:00.002-06:00

LOL! I've been in San Antonio, TX for my brother in laws wedding this weekend. Since I missed 3 days, I'll be sharing FOUR things I'm thankful for on today.

1. I'm thankful for safe travels to and from San Antonio. 8+ hours in the truck and Jayden did wonderful!
2. I'm thankful for the military appreciation shown at Sea World in San Antonio. Not only did our entire family get in free, but we were also able to save 30% on any food and beverage items (snack foods included!) and 30% off at the gift shops. This made our Saturday very special b/c Lord knows the funds were tight! Jayden had a wonderful time and was SUCH a good boy :)
3. I am thankful for being married into a very wonderful family. I'm blessed to have such loving inlaws. The weekend with them was so enjoyable and I truly missed them when they left to board their plane. We've got to do this again!
4. Today, I am thankful for WORK!! I start my new job on tomorrow morning and I'm very excited to be back in the work force and still have the time to contribute to my photography business as well!

Day 19

2010-11-19T09:19:00.003-06:00

Today I am incredibly thankful for the gift of adoption. Without adoption, my husband and I would still be childless, after over 6 yrs of trying to conceive. I can't imagine how much worse my heart would be aching without my Jayden in my life. Today is National Adoption Awareness Day! Make it a great one :)

Day 18

2010-11-18T20:24:00.002-06:00

Today I am SUPER thankful for the job offer I received to work in the Youth activity center at or gym! It comes with LOTS of perks but the best one would be the fact that we will save over $60 a month on our gym membership, get an extra 25% off of Jayden's Taewkondo (sp?) classes (an any other classes he participates in), AND the super bonus is that he can come to work with me if I need him to! This is absolutely perfect for our family and our situation. Thank you Lord!

Day 17

2010-11-17T17:08:00.001-06:00

Today I'm thankful to have the healing touch of a mom :) Jayden had to have his stitch removed from under his arm today (from his biopsy 2 weeks ago). Some skin had healed over it already so the nurse really had to tug. My poor baby cried and screamed like never before and even continued to cry when she was done (he NEVER does that). I said "Do you want mommy to cuddle you?" and he said, in between tears and sobs, "Yes ma'am" I hugged him and kissed him and he calmed down almost immediately. Sweet boy :)

Days 15 and 16

2010-11-16T11:33:00.001-06:00

Missed a day again, sorry! I'm so busy studying for my finals this week and getting prepared to say a final goodbye to my BFF's mom and to head out to San Antonio for a wedding this weekend.

I'm thankful for my patience that I know comes from the Lord.

I'm also thankful for this beautiful weather which will allow me to go ahead with my scheduled newborn session and hopefully get an outdoor picture of the bundle of joy :)

Days 13 and 14

2010-11-14T16:23:00.003-06:00

Oops! I missed a day! I was busy the entire day helping my friend move to her new apartment.

So today I am thankful for my YOUTH b/c I can't believe I was able to walk up and down 3 flights of steps for nearly 6 hours in 80 degree weather yesterday!

I am also thankful for financial stability. We are driving to San Antonio later this week for a wedding. As you can imagine, since it's so close to the holidays, it is costing lots of money. I am thankful that we are able to afford the trip though, without having to sacrifice too much.

Day 12

2010-11-12T21:38:00.002-06:00

Today I am thankful for forgiveness. Life is too short to hold grudges against anyone, especially the ones you love :)

Day 11

2010-11-11T13:41:00.002-06:00

Today I am thankful for the health and safety of my very own veteran, my husband. He served our country for 20 yrs. Going overseas, fighting in wars, and sacrificing his own life for our freedom. It wasn't hard, but he continued on and gave the United States 20 yrs of his own life. Thank you, Mike, and all the other veterans, for your service!

Also, please keep my friend in your prayers. Her mom passed away this morning.

Day 10

2010-11-10T19:51:00.002-06:00

Today I am thankful for my mom. My best friend of over 20 yrs is losing her mom :( It was not expected and my heart is hurting for her. My mom called me and told me. I cannot imagine the pain my friend is going through and I pray that God gives her the strength that she needs to get through it.

Day 9

2010-11-09T23:21:00.001-06:00

Today, I am thankful for the change in season. Jayden has not been able to tolerate the heat/sun since May. He walked outside a few days ago and when he saw the sun shining onto the porch he looked at me and said "It's hot." I said "No it isn't. Step outside and see." He went outside, stepped off the porch, and held his arms out to the side and said "YAY! I did it!" Yes, baby, you did it!

Day 8

2010-11-08T20:21:00.002-06:00

Today I am thankful for the force that reminded me to check my school email tonight. I found out that I missed an exam this morning (the dates on the syllabus are ALL wrong!) so I have until tomorrow evening to make it up. So I'll be studying tonight and hoping that a proctor is available on campus tomorrow morning to give me the test.

Day 7

2010-11-07T14:01:00.001-06:00

Today I am VERY thankful for my mom. She is always there with an ear to listen and a shoulder to cry on. I love you momma!

Day 6

2010-11-06T20:05:00.001-05:00

Today I am thankful for wine. Yes, wine! It was that kind of day around here.

Day 5

2010-11-05T17:30:00.002-05:00

Today I am EXTREMELY thankful for my faith in God!! Jayden had a really scary seizure today in the back of the truck. He's doing so much better now after some rescue meds and a nap. I know God has His hands on Jayden!

Day 4

2010-11-04T10:30:00.002-05:00

Today, I am thankful for being blessed with the opportunity to have my photography business featured on the local news this morning! Check it out :)

http://www.abc26.com/health/beautybreakthroughs/

(Look for the vidoe with a picture of a baby in a pumpkin hat)

30 days of Thankfulness

2010-11-03T17:18:00.004-05:00

This has been going around the internets lately and, right now, I'm at a place in my life where it would really help if I actually stopped to count my blessings, so I will give this a go. Who cares that I'm 3 days late getting started!?! ;) I'll start from Day 1 though...

Day 1 | I am thankful for my faith in God. It has kept me strong throughout the day to day obstacles we've had to face. Obstacles I never thought I'd have the strength to even live through.

Day 2 | I am thankful for my husband. He is my rock and he is such a wonderful provider for our family.

Day 3 | I am thankful for my health. I cannot imagine how I would be able to go about my day and be able to care for Jayden 24/7 if I did not have my health.

Are you doing the 30 days of Thankfulness? If so, please link me to your blog! If not, well DO IT! :)

Happy Halloween from Spiderman!

2010-10-31T13:01:00.002-05:00

This definitely wasn't my first choice in costumes for Jayden but gone are the days where I can pick out the cutest costume for my little guy. He knew he wanted to be Spiderman right away. And since his birthday party will be a Spiderman theme, he can wear it more than once (although I am sure he will be begging to wear it EVERYDAY!). If I'm being honest, I don't like the costume one bit! I hate that the mask covers his entire adorable face. No one will see his beautiful smile. There was a mask for toddlers that only went over his eyes and head, but my husband said it just wasn't authentic Spidey! LOL! So I'm hoping for a costume that doesn't cover his face next year, but I have a boy so the chances of that happening are slim to NONE! I think Jayden will nix the mask anyway once he realizes that he can't get candy through it tonight! LOL! Here's a look back at his previous Halloween costumes...

2008 (1st Halloween, 10 months old)

2008, my snuggle bear

2009, DJ Lance Rock (I made the costume myself!)

And a few pictures from him carving his pumpkin a few weeks ago :)

Have a happy and safe Halloween everyone!!

So...

2010-10-27T14:09:00.002-05:00

I couldn't think of a title to this post b/c I still haven't wrapped my mind around all of the new information that was thrown at me during yesterday's appointment with the genetics Dr.

One thing I want to update on right now is that he does not agree with the anhidrosis diagnosis alone. Jayden isn't sweating anymore, so clinically it is anhidrosis, however, the Dr does not feel that it has anything at all to do with Jayden's medications. Instead, he thinks that we need to dig deeper b/c it is possibly being caused by something that we are not seeing. So he's having a skin biopsy done on tomorrow afternoon :( Also, he is being scheduled for another MRI asap due to the fact that his seizure activity increased in May, we noticed the lack of sweat this summer, and he started regressing in April. Please keep Jayden in your prayers.

Anhidrosis

2010-10-25T20:05:00.004-05:00

A new diagnosis for Jayden, although I did not catch us by surprise. This summer, we noticed that he did not tolerate the heat/sunlight well at all. My mom was saying that it must be due to this being his 1st summer in Louisiana, but the summers in MS were not much different at all and he did just fine last summer. Jayden avoided playing outside at all costs which made it a particularly long summer for us. The Disney World trip was extremely hard for him and he had multiple seizures and complained about the heat all day. When he went back to school in August, the teacher and her aides noticed the same issue and said that they would start keeping him indoors for recess until the weather cooled. Well, it's cooler now, but the sun still shines so he was still having issues. We ended up changing his schedule at school so he comes home right after lunch. No recess for him :( One of the aides told me that she noticed he doesn't sweat. She was right! I haven't seen Jayden sweat in a LONG time. I know he used to sweat. I immediately went home a goggled it and came up with anhidrosis. But it's a rare condition, so what are the odds that Jayden had it? We started looking in to the medications he was on but the Drs couldn't find anhidrosis as a side effect, although one of his neurologists did raise an eyebrow to the Topamax. However, he has been weaned off of Topamax and still has the issue with the sun.

So today was his dermatology appointment. The nurse did the initial screening and I told her that he doesn't sweat and literally acts like a vampire in the sun, clawing at his skin and screaming. We waited a while for the Dr. He came in and said he looked at the chart and immediately was shocked at the complaint and had to go to his computer to do a little research, but he is certain that Jayden has partial anhidrosis. Partial, because Jayden's feet sweat really bad, but no other part of his body does. He said that Jayden's sweat glands in his feet are over active due to the rest of his sweat glands shutting down. Unfortunately, there is no treatment for anhidrosis. There's no way to MAKE him sweat. The only way to overcome anhidrosis is to figure out WHY the patient has anhidrosis. There are several factors in Jayden's situation: uncontrolled epilepsy, epilepsy meds, and his chromosome deletion. The Dr thinks that if we can get his epilepsy controlled and wean him off of all epilepsy medications then the anhidrosis should go away. The only problem with that is that it will be YEARS before Jayden is in any condition to be completely off of his seizure medications. Before that can happen, he has to be seizure free for 2 yrs and he is no where near that point right now, unfortunately. There is also a small chance that the anhidrosis is a result of the genetic disorder, but that chance is very small b/c Jayden was born with the genetic disorder yet the anhidrosis is fairly new.

The dermatologist is intrigued by Jayden's case and also concerned b/c Jayden is so young. He said that it puts Jayden at an extremely high risk for heat stroke so we have to be very cautious with him. He doesn't want Jayden outside at recess and even wrote a note for school. No prolonged playing outside. Close supervision when playing hard inside (Jayden stops after a few minutes of playing inside and runs to the fan to cool off so he feels when he gets too hot), a ceiling fan in his room (which he already has), keeping him hydrated, and carrying a reliable thermometer at all times. It's an additional risk b/c once his body temperature goes up, his seizure threshold goes down. So the anhidrosis has definitely played a part in making his epilepsy worse. It makes me extremely sad to know that my baby cannot play outside. He got a bike for his birthday last year and didn't get a chance to really even learn to ride it. We tried riding it Saturday but the sun peeked out from behind the clouds and he started screaming :( I feel like he is being cheated out of his childhood and it's not fair.

Today has been a particularly rough day for us. Jayden has been going through some obvious withdrawal issues from the medication we had to stop b/c of the rash. His sensory issues have returned with a vengeance and we are having a very hard time controlling him. Please keep him (and us!) in your prayers. He has a followup with the genetics Dr on tomorrow and I will update if anything comes from that. Until then, I'm off to sit in the middle of my bed and eat a big bowl of popcorn. I think I deserve that much!

A frustrating update

2010-10-17T16:37:00.002-05:00

The Lamictal has caused a rash on Jayden's face, which is now very red and inflamed and quickly spreading to his stomach and arms. I noticed this rash 3 weeks ago. It started off looking like a heat rash and it appeared about 2 weeks after starting Lamictal. The Dr warned us that Lamictal can cause a rash and that we were to call at her the first sign of a rash. The internet also states that Lamictal is highly known for causing a rash and if left ignored and Lamictal is continued, it can result in Steven Johnson's Syndrome. Moms, click on that link and then tell me if you would ignore even the slightest hint of a rash on your child's face after starting Lamictal. When I reported the rash the first time, the Dr called and said "Stop the Lamictal and bring him in tomorrow morning so I can look at the rash." Ok cool. So we brought him in, had a very rude encounter with her nurse, again, and then waited for the Dr to come in and glance at his face and say it's not a "lamictal rash" and that it looks "excema-ey". So I left thinking, okay, maybe Lamictal caused the excema b/c Jayden has never had excema before and this rash most definitely started when he started Lamictal. However, at that point, it just looked like a heat rash so I was fine with continuing the meds if the Dr felt it was safe. So we had 2 weeks before his next appt and his Lamictal dosage had increased twice by then. The rash remained on his face and by the day of his appt (which was Friday) it was more prominent. Also, he had been having some pretty bad behavior issues. So bad that his teacher expressed her concern b/c he was just not himself. So we get to the clinic and I expressed my concerns about the behavior issues including the extreme hyperactivity and speech regression. The Dr says, "Lamictal is not known to cause those types of issues, but let's take him down by 1 pill, although I really don't feel comfortable doing so b/c he will likely start to seize again." First of all, Lamictal DOES cause behavior issues and hyperactivity is listed as a side effect. Shouldn't a neurologist know about the drugs she prescribes?? But I regress. I went on to say 'I am also still concerned about the rash on his face." To that she replied, "I don't think that's from the Lamictal and I don't handle skin issues so you need to take him to a 'skin' Dr." Yes. She said it just like that. She definietly showed just how invested she is in her patients. You start a very young child on a medication that you KNOW can cause a serious rash, yet you ignore the rash when it appears, simply b/c it is not a typical SJS rash, and push your patient on to a dermatologist to let them figure out how to treat a rash that started after the patient began a drug that SHE prescribed?! She's nuts. She went on to try and intimidate me by basically letting me know that she knows I took Jayden to see his old neurologist at Tulane (I actually went so I could get the referral to a new neurologist and get the hell away from her!) and that I need to decide who I want to take Jayden to b/c Tricare won't pay for both. I quickly told her that Tricare never paid for Dr. Nelson, but we paid to follow up with him b/c we had some questions. I'm sure she took offense but I didn't care at that point b/c I need to know how to take care of my child.

So, back to the point. Yesterday morning, Jayden woke up and the bumps on his face were turning red. There was a line of bumps on his forehead that was actually starting to swell. I kept feeling like I was over reacting b/c of what I read about online with the risk of SJS. I kept asking myself if I truly had a reason to not trust Jayden's Dr and her decision to keep him on the meds and continue to increase his dose. The answer kept coming back as YES! I decided to stop by the pharmacy and let a pharmacist take a look at his face. The pharmacist took one look and said "That's a drug reaction. You can tell b/c it's red and inflamed." He said we should contact the neurologist. I put Jayden down for a nap and waited to see what his face looked like after. When he woke up, his forehead and the bridge of his nose was red and swollen and he kept saying it hurt. I called the after hours clinic and had the Dr paged. She called back and I said the rash was now red and swollen and she simply said, with the nastiest attitude, "Well, just stop the lamictal." I waited for a second for her to give me more instructions like "And take him to the ER so they can look at the rash." or "And bring him to me first thing monday morning so I can look at the rash." or "And try rubbing some hydrocortisone on his face to reduce the pain and swelling." I was also expecting some sort of concern for my son. Perhaps "Does he have a fever?" or "Is he complaining of pain?" or "Is it spreading quickly and is it hot?" Just anything to make it seem as if she gave a shit. Instead, I got silence. So I said "Ok, so just stop it. That's all?" She said, again with her nasty and uncaring attitude, "Yeah, if it's red and swollen." So I said "Ok, so what do we do in the meantime if he starts seizing." She said, and I quote, "I will figure that out on Monday." I am not kidding you!! So the rash that's spreading across my child's body is not important enough for you to use your brain and figure out some relief for him at least until Monday? He basically has to wait until you are back in your office? Just let him suffer. And suppose something was to happen to Jayden (God forbid) and he is not here on Monday for you to figure it out then?! This is your fucking patient and he is having an allergic reaction to a medication you put him on and you simply say 'I'll figure it out on Monday."??? Don't get me wrong, I know the proper thing to do when the rash appears is to immediately stop the Lamictal. I'm going to brush aside (for now) the fact that the Lamictal should have been stopped 2 weeks ago when I first reported this rash, but when you tell a parent to just stop a seizure medication on a child who has uncontrolled epilepsy, it's only right to have some sort of plan of action for him in case of an emergency before you can figure out what to do on Monday. I think that her actions are completely unacceptable and NEGLIGENT! Today Jayden's face is bright red and very swollen. The areas of swelling are isolated to his forehead, around both eyes and on both cheeks. He has the beginning of a rash on both arms and one on his belly that is spreading fast and is very itchy. He says it hurts and it burns. It has a sandpaper texture to it. We stopped the medicine, so hopefully within a few days it will go away, but as far as what we have to do next...well we have to wait until tomorrow (if she even calls us) to find out. My child is suffering and I have no idea what the next step is. This is not a good place to be.

We do have a referral to a new neurologist. Unfortunately they are booked for the remainder of the year but Jayden's previous neurologist is going to pull some strings to get him in sooner. Soon can't come soon enough b/c I have a feeling that things are about to get very ugly between me and this heartless Dr who should really lose her license.

Finally, some answers...

2010-09-27T13:04:00.004-05:00

in the form of an EEG report. Medical terminology translated by myself (with a little help from google, lol).

So, we had Jayden's followup appointment this morning at 9. I didn't expect much to come of the appt at all. At this point, I'm so overwhelmed with everything. He's weaning off of one medication and weaning onto another, so trying to keep up with what he gets and how much is definitely a headache. Him constantly missing school b/c of seizures is just not okay with me. His ups and downs...every time I even dare to whisper that he's having a good day, it ends badly. We can't even enjoy our son the way we want to b/c we are constantly on edge, not knowing when the next seizure will be. Saturday night, after a WONDERFUL day, he had a seizure on the couch. Things can change in a matter of seconds for him. So add to all of that, me trying to figure out, pretty much on my own, what I can do to help save my child from this constant pain. What questions do I need to ask that have yet to be answered? Then what do I do with the answers? My brain is just clouded with it all, so I have been praying for some help or at least a small patch of sunshine so I can take a breath and regroup. Rebuild my strength that I need to continue fighting for my son.

God listens :) The Dr came in to the room (ironically, she seemed to have a new nurse) and observed Jayden for about 5 minutes. He was playing with a pop up book and used some words to communicate with the Dr and to put certain pieces of the book back together...

"Sit down" "I read book" "There it is!"

She was impressed and so were we. What I do understand is that epilepsy causes severe neurological damage so we have to constantly watch his speech to be sure that it continues to get better and not worse. He may forget certain things (like ABCs) but as long as he is still adding new skills (like the use of pronouns recently) then he is still doing well. After she observed him doing his thing, she asked about the seizures. We reported the seizure from Saturday night and she explained that we will not notice much difference in the frequency of the seizures until he gets up to the correct dosage of the medication he's slowly being started on. He starts with 10mg per day for 2 weeks (one week is already complete) and then we add an additional 5mg per week until he is up to 50mg per day. He won't get to 50mg until November, so we have to hang in there. Thankfully, the weather seems to be getting cooler so hopefully the seizures at school will decrease. The Dr wrote out the weaning schedule for us (he's weaning off of another med as well, so it's a bit detailed) and then asked if we had any questions, so I asked her to explain to me the results of the EEG b/c I wasn't exactly clear. She said something along the lines of "It tells whether he's having abnormalities in the frontal lobe or generalized and then I can know which medication to put him on. This particular EEG showed that it was time for him to get off of Topomax and try a new drug." She also said that unfortunately, growth and epilepsy do not go well together. As he grows, his seizures can get worse, which is why his meds have to constantly be adjusted. I totally understand the growth/seizure issue, but I still didn't understand the EEG, other than the fact that it was abnormal and told her to change the medications. Hmmm. But my brain is foggy so I just left it alone. She came back in the room with a copy of the EEG report and said "You can keep this for your records. It's probably hard to understand but some parents like to have it for their records." I folded it up and stuck it in my folder to read it later. I actually read it on the ride home and couldn't believe all of the information I was able to decipher without the help of google.

First of all, it read "during drowsiness and sleep, very frequent spikes were seen..." So we now know for certain that most of his activity is happening in his sleep and it's happening often (probably every night b/c he was still on all of his meds during the EEG). What I do know, from my own research, is that sleep induced seizures are harder to treat. We've been asking how we could be sure if he was having seizures in his sleep or not. Here was our answer. That also explains the prescription that the Dr wrote today for a night time seizure medication. So she is treating the issue, but not explaining it at all :/ The EEG report also reads that his abnormal results and location of the spikes suggests a "benign occipital epilepsy of childhood". You can google it (or use swagbucks and earn FREE stuff!!), like I did, and get a better understanding of it. Over two thirds of the seizures occur in sleep. It's difficult to treat, however many children who have an early onset (like Jayden has) generally go into remission within 2-3 yrs of the onset and completely out grow the condition after reaching puberty. SUNSHINE!! I am aware that there is still that chance that Jayden can fall into the small percentage of kids that do not outgrow it (he's fallen into that small percentage quite often) but just knowing that there is a chance that he CAN beat this is enough to make me stronger. Strong enough to keep fighting to increase his odds of beating it.

The Dr told us that there were no changes to the EEG, however, the EEG report (read by the Dr at the hospital) said that there was a difference. In April, he had focal slowing in the left occipital region. This EEG didn't show any slowing so there is question of a structural lesion in his brain. The Dr mentioned that she is contacting the hospital for the results from his MRI in January (why she doesn't have it already, I'm not sure), but it looks like there will be another MRI in his future. We meet with Dr. N (Jayden's 1st neurologist whom we love!) on the 11th and will get his opinion on the results and also a referral to the epilepsy center at Children's Hospital for their opinion. Just knowing that he can overcome this lit a fire under my butt and I'm knocking down every door possible until we get a clear understanding and a solution/plan to helping my little boy. Today, we are one step closer than we were yesterday and I am holding on to that hope, in the form of a piece of paper. Thank you Lord!

Another update

2010-09-17T20:38:00.004-05:00

Well. Not too long after I blogged this morning, Jayden's condition got worse. I mentioned that my husband had to pick Jayden up from school early b/c he had a seizure. He got home and was on the couch when he had another one. Then, 10 minutes later, another one. I figured, what's the use in calling the Dr b/c she shows no sense of urgency anyway but once my baby started screaming "Mommy help me!" I was going to force some urgency on them. I called and I told the receptionist, " I need Dr. A or her nurse to call me back asap b/c Jayden is having multiple seizures RIGHT NOW and is not recovering." Jayden was SCREAMING in pain as I left the message. I hung up, not expecting a call back anytime soon and went and got a cool wash cloth to place on Jayden as my husband held on to him. 5 minutes after I left the message, the nurse called me back {gasp}. She immediately said, "Dr. A is not in the office today but her partner, Dr. W, said that you need to bring Jayden in to the ER right away." Then she says, "Please keep us posted on his condition, I'm in the office today until 5 pm." Seriously thinking that I talked to a different nurse who just happened to have the same name and voice as the other nurse. Weird.

Well we hopped in the truck and drove to the ER (45 minute drive!). He had another seizure in his car seat on the way there. We didn't wait long at all in the waiting room and didn't wait long to be seen by the ER Dr either. Jayden's eyes were open somewhat and he was barely alert. He responded to pain and followed the Dr with his eyes when she moved around the room. However, he could not lift his head, his reactions were delayed, and we could not lie him flat or even on his sides without him going into hysterics. They drew blood and inserted an IV and then called the neurologist. The neurologist considered him as status epilepticus, which is pretty much intermittent seizure activity for 15-20 minutes or longer without regaining consciousness. So he was given a dose of Ativan through his IV. In less than 2 minutes, Jayden went from being listless, nonverbal, super drowsy, eyes rolling, to being able to hold up his head, smiling, TALKING, and even squealing. I could not believe my eyes. It was seriously the most amazing thing I've witnessed in a long time. That medication brought my baby back in the blink of an eye. When the Dr came back, even she was amazed! She said that based on his reaction, he was more than likely still seizing the entire time (even though we hadn't seen any tensing of his body in the ER at all)and the Ativan stopped it almost immediately. The entire mood in that room was changed. So Jayden was discharged with a Rx for the tablet form of Ativan to take in case of another situation like this one. The Dr also told us that his Diastat (the rectal rescue med that we carry with us) works just like the Ativan and will probably work just as fast since it's rectal, so I won't have to be afraid to use that if needed. Also, I was under the assumption that it should only be used for seizures lasting 5 minutes or longer. The ER doc told me that intermittent seizures (like the ones Jayden was having) lasting more than 5 minutes are just as dangerous if the person isn't regaining consciousness, so they should be treated as if it was an ongoing seizure. Patient education is very important! So now I know that we are prepared no matter the situation although I would LOVE for the seizures to just go away and leave my poor baby alone. Also, we left the ER with a Rx for the medication that his neurologist wanted to add (Lamictal) to his combination on the 27th. I guess God agreed with me, in that there's no reason to make my baby suffer until the 27th. He started it tonight and will begin weaning off of the Topomax on the 27th. I left the emergency room with more hope than I've had since the last time we were able to see Dr. N, Jayden's previous neurologist. I'm praying that this new combination of meds does the trick for him.

There was something really strange that my husband and I noticed at home today, during the fiasco. We have two mini schnauzers, a male (Kodi) and a female (Kaci). Kaci is 6 yrs old, and very calm around Jayden. She lets him pull at her ears (we stop him whenever we catch him, but once he dragged her across the floor by her ears!). She lets him ride Spiderman on her back. She lets him put sunglasses on her face and then she wears them until he takes them off :) Kodi, on the other hand, is 9 yrs old and not as patient. When he sees Jayden coming, he walks away. He either goes under the dining table and lies there or he goes to the laundry room. In fact, usually Kodi stays in the laundry room until Jayden is either taking a nap, upstairs playing,at schoo, or gone to bed for the night. LOL! He just doesn't have the patience. Well, when Mike got home with Jayden, Kodi came barging out of the laundry room and met them at the door, sniffing Mike's leg. They greet us at the door often, so we paid no attention to this. I hugged Jayden and asked if he was okay and then he put him on the couch and Kodi laid down in front of the couch. Everytime Jayden moaned or whined, Kodi sat straight up. When Jayden started to get really upset and Mike went to pick him up, Kodi got defensive and seemed to be guarding Jayden. He stayed at Mike's foot as if he was watching his every move and his eyes stayed fixed on Jayden. After I spoke with the nurse and we were packing up to go to the ER, Kodi started whining and pacing the floors. Mike turned the truck on and I took Jayden out to put him in his car seat and Kodi was at the door barking. Mike said he went to put Kodi in the laundry room (they go in there when we leave the house) and Kodi would not stay in there. He was scratching at the wall and whining. While Mike was inside, Jayden had another seizure in the truck. I think Kodi can sense the seizures! Crazy. We are thinking of switching up sleeping arrangements and letting Kodi sleep in the room with Jayden each night. We know he has seizures in his sleep, but we are never able to know when. My worse fear is that he would have one in the middle of the night and can't call out to us for help if he needs us. We've considered getting a seizure monitoring system, but as with any electronic device, we would have to expect false alarms and that makes me too nervous. The fact that Kodi is sensing the seizures is like a hidden blessing in the midst of all this sadness. I thank God for every rainbow he is sending our way and I look forward to many more.

EEG results

2010-09-17T10:22:00.002-05:00

Jayden's EEG results are still abnormal. The Dr reported that "nothing has changed", meaning that the abnormal brain waves are coming from all areas of his brain and not just one localized region. Unfortunately, this does make it hard to find the correct medication for him. Certain anti-convulsants work best for certain regions of the brain, but in Jayden's case, it's his entire brain so it's going to take time to find the right combination for him. That part, I understand. What I don't understand is why we have to wait until his follow up appointment, scheduled on the 27th, to change his medication. Our first appt with this Dr was on Aug 26th. At that appt, we told her that Jayden was having AT LEAST one seizure a week and that this had been going on since June. I've read (and the Dr actually told me this!!) that the longer seizures are left untreated, the harder it is to control them. So if she knows his seizures are not controlled at this point, and she knows that his EEG is still unchanged, and she knows which medication she wants to wean him off of and what she wants to replace it with, then WHY is she making him (and us!!) wait another week and a half to make the changes? Why not give us the instructions on how to wean him and how to start the new meds and then followup with us on the 27th to see how he's doing? Honestly, I feel AWFUL, as if I'm dictating how this DR should be treating my child and she's been at this for over 20 yrs. I am not even close to being as experienced as she is, and I am SURE that she knows what she's doing and why she's doing it. However, as a mother, I think an explanation of WHY would help me at this point. To them 12 days is just another week or so. To me and my husband, 12 days is another 2 or more seizures that we know we will have to witness and be strong for.

Jayden hasn't been a patient of this new Dr for a month yet, but I know that I am already the mom that they roll their eyes about when they get a message from me. I'm the mom that they gossip about and despise. I know this b/c I have had to call to leave messages at least twice a week for them ever since Jayden 1st saw the Dr and had the 6 minute long seizure that same night. Now when I call, the lady at the call center knows me by name and says "Do you need to leave another message for Dr. A?" Yesterday, I said "Yes, and I promise you I wouldn't be calling this often if they would just return my calls!" It's true, I have to leave at least 2 messages before they return my call and God forbid I miss the call when they finally return it. It's freaking ridiculous! I don't want to be that mom. I have stopped and ask myself, am I calling too much? Since his 1st appt on Aug 26, I called 3 times about his 6 minute long seizure before they finally returned my called. I called twice about getting his prescription renewed before the nurse finally returned my call. Then I called twice about his EEG results and to find out if we needed a followup appt before my call was finally returned. Then, I missed the call from the Dr about the results and I had to call twice before I actually got a call back. One message never does the trick for them, so it's not me, it's them and THEY are annoying me! I mean, what mom is not going to call to answers for WHY her child is having seizures so often. What mom doesn't want reassurance that it will be okay? What mom is going to just wait around, for a month, on a Dr to finally decide what needs to be done with her baby who is having seizures so frequently that he's missing at least one day of school a week?!?! I don't know of any. It makes me wonder if the Dr and her nurse even have kids...

It's frustrating, to say the least. But now I will count the days until the 27th and pray for a decrease in the seizures soon. Until then, I need to go and take care of my little guy who was just checked out of school early b/c he had a seizure during breakfast.

PROGRESS!!

2010-09-10T13:06:00.003-05:00

Finally, a post with great news :)

Jayden has been regressing a lot lately due to the increase in his seizure activity. One of the main things we noticed the he lost was his ability to identify the alphabet. It may sound very trivial, but it is very disturbing to see your child go from spelling out words to not being able to identify a single letter. It's extremely hard for me b/c Jayden expressed a love for alphabets very early on. I have a vivid memory of carrying him out of Kohl's one evening, when he was just 2 yrs old when all of a sudden I hear him say "K...O...H...L!" Of course, I know he had no idea what he was spelling, but he saw letters and identified them! And this happened all.the.time. He would pick up the newspaper and start calling out the letters in bold print. Also, I have an Aeropostle shirt that Jayden loves. It has "AERO" on the front and he loved to spell it out. I also have an Air Force shirt with big "AIR FORCE" on it and Jayden would spell that out and then say "Daddy" :)So letters were a big deal to him and it was very painful to watch him lose that. Every letter became B. Even the ABC song was now "B B B B B...." :( We would show him flash cards and every letter to him was B. We tried two letters at a time...A and B, and we would tell him to say A when he sees the A card. He'd repeat after us, but when asked what the A was, he would say B. My Aero shirt meant nothing to him anymore. Letters meant nothing to him anymore. I was very discouraged and worried about him. His teacher told me it wasn't yet an age appropriate skill, but his neurologist did agree with me that the lose of that ability becomes a concern when neurological issues come in to play b/c the brain is being affected.

So in true fashion, I took it upon myself to help my baby :) I ordered him the Leapfrog Learning DVD set. It comes with 3 DVDs (Let's Go To School, Letter Factory, and Talking Words Factory) and alphabet flashcards. It took a while for the set to come in, but it actually came in on the day we left for Panama City, just last Thursday. Jayden instantly loved them. The entire 4 days we spent in the hotel, he requested the DVDs. Whenever he asked to watch a movie in the truck, we turned on the Letter Factory. Before we left Panama City, on Labor Day (only 4 days after watching the videos), Jayden pulled the flashcards out of the box. They were still packaged so of course the only card he could see was the letter A. Remember, before these videos, all letters were B to him. He walked up to me and handed me the cards and said "Mommy, A!!" SO PROUD!! And as if that wasn't enough, last night we were chatting with my mom while she was proofreading nursing notes for her job. Jayden picked one up and grabbed my mom's face and said "You hear me?" (we ask him "Can you hear me?" very often b/c of his staring spells! lol) and then started "reading" the notes to her. On the bottom there are a few sentences in bold, black ink and Jayden pointed to the letters and identified just about all of them!! And this was only 7 days after being introduced to these DVDs!!

I am NOT expecting or even hoping that these DVDs teach Jayden how to read (although these DVDs are highly recommended for teaching early reading skills and is MUCH cheaper than Your baby can Read!). I am simply trying to help him to regain his love for letters. It was something he enjoyed prior to the seizures stealing that from him. His little brain is still so vulnerable, still growing, so there is still hope that he can regain skills that he has lost (or will lose). This is one step in the right direction for him and it certainly puts a smile on my face!

EEG scheduled

2010-09-07T13:00:00.003-05:00

I was able to get in touch with the Neurology department at Tulane Hospital today and the scheduler was able to get us on the schedule for Thursday morning. I confirmed the date, but she still needed to call the nurse over at Jayden's Drs office to have her to call for the authorization from Tricare and to have her to fax over the order. I do believe it would have been MUCH easier for the nurse to call Tulane herself, but oh well, it's done. I'm still not understanding why he needs a 4th EEG done, though. We KNOW he has epilepsy and we KNOW that his seizures are breaking through the current meidcations. At this point, I have no idea what information she is trying to find by doing a 4th EEG. He has to be sleep deprived for it so we will keep him up until midnight on Wednesday and send him to school on Thursday morning. Then we will pick him up early and head over to Tulane for the EEG scheduled for 11:30. The hard part will be keeping him awake for the ride to the hospital. His genetics appt is scheduled for next Tuesday. If we don't start to get some answers or, at the very least, some medication adjustments or changes, we will be switching doctors.

My mom is the head of her nursing dept and was very upset about the experience I had with the nurse last week. She said that it definitely sounds like the nurse is sending me information prior to seeking advice from the Dr, especially with the refusal to refill Jayden's medications. I do hope that no Dr will ever refuse to refill a patient's seizure medication without good enough reason to do so! So my mom decided to call the nurse and speak with her. She said it was a very pleasant conversation and my mom did mention the State Board of Nursing to her at some point. The nurse told my mom much more information than she told me (not about Jayden or his condition b/c of the HIPPA law) but about why she wanted me to call and schedule the EEG and who to call and that the Dr wants the EEG done asap. Then she told my mom to tell me that she apologizes if she made me feel uneasy or upset. I don't know what to even say to that. We will see if she treats us better at the next appt, which BTW, is not even scheduled. I will make sure to let the Dr know about the issues with the nurse b/c my mom thinks the Dr may not even be aware of the situation.

On a positive note, we took a 4 day trip to Panama City and Jayden didn't have a single seizure! We had a few "scares" where he would get over heated and we'd have to rush to get him cooled off, but he never had a seizure and we were are so grateful! He was even able to play and enjoy himself on the beach (we had to stay close to the water though). We are hoping for many more family vacations like that one :)

I'm Done.

2010-09-02T17:39:00.002-05:00

First of all, let me apologize for what is about to follow. I need to vent. I just need to get this out, so I have to come to my blog...

Yesterday morning, before I even typed out that blog, I called and left a message for the nurse. The way this clinic works is that there is one front desk for every specialty clinic in the building. They take the message and email it to the correct nurse. Even if you miss a call (like I did today) you call back to the front desk and they send another email simply stating that you returned their call. Totally frustrating. Well anyway, my message yesterday was that Jayden was almost out of Topamax refills so we needed a new prescription called in. I left the name of the pharmacy and the number. I also asked for an update on the EEG that the Dr was supposed to be calling to have done sooner than the 16th. Of course, no one ever called me back. I wasn't surprised, but I was hoping that the nurse was smart enough to call in my child's seizure medications before he ran out with a 3 day weekend ahead. I called CVS and they checked the system and said that he had a prescription for Topamax on hold that they could fill. Since it was on hold, I knew it wasn't called in by the new Dr. It was on hold from Jayden's previous Dr from a mistake that was made by the pharmacy a few months ago. However, I waited until I got to the pharmacy to be sure. I was right. The prescribing physician was his previous neurologist. So I had the medication, which is great, but I was (and still am) angry at the fact that they didn't even bother filling his medication. Thank God I was silly enough to wait until he was completely out, but we leave for Florida tonight and he did not have enough to last the weekend. So I called again this morning. Oh yeah, I know I am the aggravating parent of the clinic now. I don't give a shit at this point. The nurse called me a few hours later but I missed her call. I called back and had to do the message circle again. She called back an hour later with a huge attitude. She immediately started to defend herself for not calling me back.

She said "We cannot call in that prescription for Jayden b/c we didn't prescribe it."

Wait, what?!?!

I said, "I know, his previous neurologist prescribed it and we just happened to run out of refills and need a new prescription called in since he is about to run out and I know that we cannot wait until the EEG b/c he will be out of medication by then and his seizures are already out of control." She then says, "Well when you came in on the 27th YOU told us that he was taking 15mg of Topamax, but you are asking us to fill a prescription for 25mg." I told her, "No ma'am. What I told you was that I was not sure of the mg but I could call you when I got home to check the bottle." I didn't want to turn around and point the finger at her, when in actuality, she went into the computer and it was listed there as 15mg so she went with that. But here is my problem with this...When I left the message I was reading off of his prescription bottle. 25mg. That's what he's been taking. That's what I read off the bottle. So you mean to tell me that b/c what I am telling you is on his bottle of meds does not match what's in your computer, you will NOT call in his medication? Does she know what will happen to my child if we just all of a sudden stop giving him his medication? She the nurse of a neurologist, so you would think that she'd know how serious that would be. But judging from her attitude, I don't think she knew, or she just doesn't give a shit. I told her, "Ma'am, he takes 25mg capsules. I read it from the bottle. He needs more medication." She said okay it will be called in. Thanks! So then I ask if the Dr spoke to her about moving the EEG up. Here goes...more finger pointing and defensiveness.

"No. {insert patronizing laugh}The Dr told YOU to call Tulane and schedule the EEG."

SERIOUSLY?! What is my insurance company paying her for???

I said, "So I just call neurology and tell them that I need my son to have an EEG done?" Nurse, "Yes." I said "Okay, thanks!" and hung up the phone. She is full of it. I cannot call a hospital and request an EEG for my own child without orders from a Dr. Besides that, it's NOT my job!!! That's ok. I'm going to ATTEMPT to call Tulane tomorrow. I imagine I will get several confused receptionists and schedulers (if I even get that far) who will be wondering why I am calling to schedule my child's EEG. Then I will have to call the neuro's office back, leave a message, wait for them not to call back. Then we will go on through a 3 day weekend. Who knows how many seizures Jayden will have had by the time the nurse calls me back. And by then, what's the use of having the EEG moved up sooner. This is unacceptable.

What's crazy is that this Dr is highly recommended and supposedly the best in New Orleans. I truly expected much better care than this for my son. The communication there is awful, and honestly, the Dr needs to find herself a new nurse b/c this nurse is giving her a bad rep. My son has had 4 freaking seizures since he saw her on Thursday, 7 days ago. I have had ZERO support from them and then today the nurse tries to REFUSE to fill his medication. The Dr may very well be the best in New Orleans, but unfortunately I don't think she is good enough for him.

Not Happy

2010-09-01T11:08:00.003-05:00

I hate that I am even in a position to have to type this out....

I am not happy with Jayden's new neurologist!

We waited for months and I was SO HOPEFUL! So far, she was not worth the wait. If you read my last post, you know I'm not saying this b/c of her inability to "magically" heal my son and give us answers. I completely understand that she is human and I trust that she has some sort of plan to figure out what's going on with him and how to help him. HOWEVER...

Jayden was off Thursday morning. We actually left out of the house late b/c he was just not himself. He dazed almost the entire 45 minute ride to the clinic. Then when we got there he was very sleepy and lying in my husband's lap (pretty sure he'd had an absence seizure in the car). Well he was fine after a nap and we went over to my parents' house for dinner. Jayden played with his cousin and they even went to sell some of his cookie dough for school to the neighbors. He was just fine. But then he sat on the couch and we were at the dining table and could see him clearly. All of a sudden I heard him whine and I looked over at him. He tried to get off the couch but ended up doing a faceplant into the couch cushions. He cried and reached and the first person to get him was my niece. She sat him up but told me that he didn't want to get off the couch. Thinking back, when he starts having a seizure, he is impossible to easily pick up. It's like his entire body fights you. So she probably thought he was pulling away from her. He cried more and reached for me and I knew he was about to have a seizure (or having it already) so I picked him up and brought him to the table with us. It only got worse from there. He moaned, pounded on his head with his fist, pounded on my shoulder. He was hot and clammy and drooling. And this went on for 6 minutes. 6 long ass minutes. Can you imagine watching your child OBVIOUSLY in pain and you cannot do a thing FOR 6 MINUTES!?! My mom was ready to give him his rescue meds, but honestly, I wasn't prepared. I was worried about how he would react. The Diastat is rectal valium. The nearest hospital is over 20 minutes away. His seizures never lasted this long. I just kept saying, "It's gonna stop. It's gonna stop. It HAS to stop!!" It did stop eventually. But it left us with a baby that was out cold and family full of worry. He was absolutely fine the next morning albeit pretty hyper and uncoordinated.

So, of course, as would any concerned mother would do after an event like this, I called the Dr to leave a message on the next morning (Friday). My message was that my little boy had a 6 minute long seizure and his coordination is still off and I'm concerned. No one bothered returning my call. Bad taste. We stayed home (or close to home) all weekend b/c I couldn't bare him having a long seizure like that out in public. My strength is breaking. Sunday he had another one. It was VERY short, but strong enough to make him scream out in pain and then pass out. I called again on Monday and this time I said that I left a message on Friday and I didn't get a call back but really need to speak with someone b/c I'm concerned about my son. 2 hours later, the nurse called back. I told her about the seizure and she asked me if he was breathing the entire time. He moaned alot and every now and then he did take a deep breath before he seized again. That's all I could tell her. His face was losing color but it had been that way all day (the color of his face is the first thing I notice on a bad day). So then she says she will tell the Dr and the Dr will give me a call back. Well that was at 10am. 4:30 came and I never heard from the Dr. I called back and left a message asking if the nurse spoke to the Dr about my son. Yeah, I annoyed the shit out of them, but I cannot be timid about this when my child is suffering and possibly having some brain damage done during all of these seizures! If anything, give me a call back for reassurance. Well at 4:55 my phone rang and it was the Dr. I gave her a run down of what was going on and she said that she will call another hospital to see if they can do his EEG sooner than the 16th (the 4th EEG when the first 3 were all abnormal anyway...)but that she couldn't do that until the next day b/c scheduling was closed. Scheduling would not have been closed had she called me back sooner. But I give her the benefit of doubt and say that she was more than likely very busy with patients. HOWEVER, what if my son was an emergency situation?! I'm just not comfortable with that. This conversation with her was on Monday. She did not call me yesterday with any info on his EEG. I called this morning to find out about it. I left a message and I don't expect a call back today. I don't like chasing behind her. It's one thing if Jayden was a 100% healthy child with no serious issues, but frequent seizures is very serious. She should be making a bigger effort to not only get him help but to reassure us that she is working on a plan. To reassure me that the seizures he's having is not hurting him even though they are NOT controlled. To reassure me that the medication I'm dumping into his system twice a day (that is NOT working) is not poisoning his little body. Instead, all I get from her after I track her down is "Let me see if I can move his EEG up sooner, but the main thing we need is the genetics appt b/c I have to know if this is even something worth treating." Um, gee thanks for that reassurance!

I am so sick over this. I feel like I am failing him. His last neurologist was wonderful, despite the fact that he did not specialize in epilepsy. When Jayden was referred to him, he only had the abnormal EEG. We hadn't witnessed multiple seizures until the first (that we saw) grand mal seizure on Thanksgiving Day. After that, the seizures kept coming and he got the diagnosis and Dr. N was honest with us and told us that he needed to refer us to a neuro who specializing in E. But one thing about Dr. N...he returned calls. He reassured us. When Jayden's seizure activity increased, he did something about it. And when Jayden was very sick in April with breakthrough seizures (40-50 seizures a day!!) Dr. N returned calls immediately telling us what to do. He even called down to the ER to let them know that Jayden needed to be admitted when he arrived there. I am so afraid of that happening again while he is under the care of this Dr. She is not easily reached and does not seem to think that we are even deserving of a returned phone call concerning our son's health. I'm not happy with her. Sometime I wonder if I'm expecting too much b/c this is my son. But NO!! What is a phone call? What is a few minutes out of your busy day to let a very concerned parent know that you are actually working on a plan for her sick child? I don't even need the Dr to call me. Pass the message to your nurse for crying out loud. Here we are, going into a 3 day weekend. We have had a trip planned to visit my inlaws in Fl for some time now. We will have to go prepared for Jayden to have a seizure. I can handle the seizures. It's tough (especially the long ones!) but he's so scared when he's having one so I have to reassure him that it's gonna be alright. I only ask the same of his Dr. It's time for me to start the search for a new one...

Broken

2010-08-26T14:29:00.002-05:00

Well, today was the day that we've patiently waited on for nearly 2 months now..To meet with the pediatric neurologist who specializes in childhood epilepsy. I prayed that we'd walk in there with our list of questions and leave there with all of them answered. I believe that we often expect way too much out of Drs. Almost as if they have an answer for everything when they simply do not (b/c they are HUMAN!) and we expect them to have a magic wand that they can wave and say some magic words..."Seizures be gone!!" and voila, he's healed. It's not like that at all :(

I can't say that the appointment started off in a positive fashion. We live 45 minutes away from the clinic and we tried really hard to get out of the door on time. That's pretty hard to do when you have a little one who has to take 5 different medications each morning and that same little one is having a rough morning. So we left out of the door 10 minutes late. Our appointment was scheduled for 10:30 and we got there at 10:42(per my watch). We get checked in and they call Jayden back. The first thing the nurse says is "We won't be able to triage him as we usually do b/c you are running late." I ignored her b/c really, it takes all of 2 minutes to triage and I'm sure the Dr would have us waiting longer than that. So as she waled us to the room she asked something about our address and she noticed we live in Slidell so I said "That's why we are a bit late. We had a ways to travel to get here." Then she says, "Yeah well, you can't be more than 15 minutes late or we would have to reschedule the appt." So I smiled and said "Oh okay, we were just about 15 minutes late and I apologize for that." She said "16...you were 16 minutes lates." ARE YOU KIDDING ME? I simply said, "Wow." I wanted to slap her. I told my husband that if the Dr is as nasty as her nurse then we will have a problem. Thankfully, that wasn't the case. In fact, the Dr shooed her crazy nurse away when she questioned me about Jayden's med dosage when what I was telling her wasn't matching what was in the system. The Dr said, "Mom knows how much he's supposed to get and it probably just wasn't changed in the system. It happens." So anyway...about that appt.

The first thing the Dr says is "Ok, if it's not broken, I won't fix it, but if it is broken, I WILL fix it!" Big sigh of relief :) So the first thing we tell her is that he's been having seizures at least once a week. She says okay that's not good. That needs to be fixed. So she asked about the nature of his seizures and his postictal state. I also gave her a list of our concerns (I'm THAT mom) but she was very thankful for it and even asked if she could keep it for her records. She highlighted things that were red flags to her. She seemed mainly concerned with his lack of coordination and constant falling. She asked if we noticed any seizure activity when he would fall, but we didn't. We just thought he was clumsy or thrown off by his meds. She told us that since his seizures start and end so quickly, the falls may be seizures. She was also VERY concerned about the regression. Jayden's pre K teacher told us that it really wasn't a concern b/c the skills that he was losing (ABCs, counting, colors, etc) are not necessarily age appropriate skills. The Dr agreed with that, but she said it becomes a concern when there is a know neurological issue. This means that his brain is being directly affected. We were very surprised that she wasn't as concerned about the heat sensitivity. She told us that heat makes epilepsy worse. So he's avoiding the heat b/c the heat makes him "feel funny", which is the aura he gets prior to seizing. Makes good enough sense. So the seizures need to be better controlled and then the heat sensitivity should get better.

The Dr wants us to get him back in to see the genetics Dr so that he can dig further into the chromosome abnormality and find out how it's directly affecting (or causing) the epilepsy. She also scheduled another EEG. This will be his 4th (or 5th) I've lost count. He has to be sleep deprived which means I will be sleep deprived. And I have class on the day that it was scheduled. Oh joy!! She pretty sure that he will need his medications changed but she wants to find out exactly what part of his brain the seizures are coming from so that she can get him on the correct meds and dosage. She left us with a warning that since his seizures went untreated for so long (she said his initial regression at 18 months could have been due to seizures and we didn't catch them until over a year later), they will be harder to control, even with medication. So in a nutshell, it's broken and needs to be fixed. And fixing it is not going to be as easy as waving that magic wand and saying those magic words. If only we lived in a perfect world.

Back to School

2010-08-11T16:39:00.003-05:00

Today was Jayden's 1st day back in preschool after his summer break. He was excited to go back. He has grown so much over summer break, physically and mentally. He's talking in complete sentences, making requests, and he's completely potty trained. When school let out in May, he had the pee pee part down but due to the damage in his intestines caused by the celiac disease, he was still working on gaining control of his bowel muscles. When I told his teacher that he was in underwear and 100% potty trained she said "He's WHAT?!?!" I said "He's potty trained!" and she gave me a hug! LOL! One less pullup/diaper she has to change, so I can understand the relief!

Here's a cute video of Jayden headed to his class on the first day :)

Annual Family Vacation 2010, RECAP

2010-08-08T14:34:00.006-05:00

We've been going to Orlando each summer in August since 2004...Mom, Dad, my niece, and Mike and I. Once Jayden was born, he joined in on the fun. And this year was the best yet! But, of course, as with any vacation there is always The Good, The Bad, and The Ugly!

Let's start with the Good...

WE HAD FUN FUN FUN!! The drive to Orlando and back was AWESOME! Jayden was so well behaved that we hardly knew there was a 3 yr old in the truck. This was completely opposite of last year. Last year was AWFUL, but of course we had no idea what was truly going on with Jayden and were still fighting medical Drs to find out. This time around he watched his movies, got out at rest areas to use the restroom, and was just all around a great traveler. Once we got to the resort, Jayden had to have said "Wow" about 50 times. He was truly amazed and he showed that. We went to Universal Studios, Islands of Adventures, Magic Kingdom, Epcot, and Hollywood Studios. We also did a day at Blizzard Beach Water Park. Jayden met and took Pictures with Spiderman (and the other Marvel comics superheroes),Mickey and the Gang, and several other characters that he knows and loves. He is exactly 40 inches tall so he was able to ride on a few rides. His reactions were PRICELESS! On the Spiderman ride, I wish I could have had him on video. He was helping Spiderman to fight crime and had his jaw on the floor the entire time b/c he really thought he was in the scene. And we took him on a Jaws ride. We didn't think he knew anything about Jaws, but when we got to the attraction he pointed to the shark and said, "Jaws!!" Then we remembered that he watched Jaws at on of the gym's dive in movies. He has a superb memory. He was so into all of the action and he does this thing where when he gets shocked he shakes his head as if he's doing a double (or triple take) and holds his mouth open in shock. He had so many people laughing. The parks were very accommodating to Jayden's needs as well. We were given a red sticker to put on his stroller to allow us to use it as a wheelchair so we only took him out when we really needed to. For the most part, he was able to stay in the stroller and the park staff was very kind about it. This helped him alot b/c at one point (going to meet Mickey at Magic Kingdom) I didn't use the option b/c I thought he could handle the line since it was inside in the AC and within 10 minutes of waiting, he started hyperventilating. He still has the fear of large crowds and I'm sure the noise of all the people talking was overstimulating to him. After that, I decided to just use the pass to it's full advantage. Jayden was also accommodated at the food areas as well. One day he enjoyed a hot dog on a tapioca bun. Pure joy! This was truly his magical year!

Now how about the Bad...
Of course, the seizures :( We definitely didn't expect to get through this trip without a single seizure. We actually went prepared for them. We had BOTH of his Diastat meds in case of a seizure lasting 5 minutes or longer. We had an ice pad for his stroller, two fans, and a stroller parasol. So many people commented on his get up, lol! We had ice packs in case he overheated, his noise reduction headsets in case he got overstimulated by the noise, his blanket for security, and lots and lots of water. We were also prepared to leave the parks at anytime for him b/c we knew that he'd been having issues with the heat/sun lately. However, his seizures all happened outside of the parks, in air conditioned areas. The 1st one was bright an early Sunday morning, before we even left the resort. Mike and I were packing his bag, my mom and dad were in their room, and Jayden was on the couch with my 13 yr old niece. He went from being a speed demon to sitting on the couch whining just like that. I never seem to panic when he does this, I have no idea why. I went and held him for a while and he was just acting sleepy so I figured he was just tired from the long day we had Saturday. I sat him on the couch and went to finish packing his bag. They were watching the Disney channel and I heard Jayden say "I'm scared". He says this before a seizure, but it still didn't register to me b/c I wasn't looking at him. I heard my niece say "You're not scared, this is a cartoon!". He kept whining saying he was scared and then he got quiet (I thought my niece picked him up) and then all of a sudden was a full on cry, as if he'd fell and hurt something. I went to get him and immediately knew he had a seizure. I didn't want to scare my niece so I just picked him up and carried him to our room where he immediately passed out. My mom came out after a few minutes and when she saw him she asked what happened but she already knew. I told her he had a seizure and my niece came running in very concerned. She said "He just started screaming, I didn't know it was a seizure." It's so hard on younger kids to understand that seizures are not going to always be extreme like the ones they see on movies. I told her what to look for in case he was with her again and we were not in the room. A major sign would be him whining and saying he's scared. I assured her that it wasn't her fault and he would be okay. He woke up after a good 45 minute deep sleep and then we headed to the park to see Spiderman and the rest of his day went extremely well! Mike and I were sure that this would be the only seizure b/c he has been having one a week for some time now. So we were both glad to "get that out of the way", but we were wrong. Mon-Wed went GREAT and Jayden was having so much fun! Thursday was Mike's birthday and we had reservations at Chef Mickey's for breakfast. Jayden woke up feeling warm. I left his thermometer at home, but my mom and I both agreed that he felt warm enough to need some Motrin, so I gave him some before we left for breakfast. He was very quiet and drowsy on the ride to Chef Mickey's. My dad and I kept saying "I don't think today is gonna be a good one for him." We got to Chef Mickey's and he seemed to perk up a bit, but you could tell he still wasn't feeling well. He only wanted to sit on my lap. When his food came out, he did eat some, which I thought was a good sign. His eyes had a very far away look to them though and he kept staring off into space. When Mickey and Minnie came to the table he hopped out of his seat to give them hugs, but his coordination was WAY off. He still wanted to see them though. He'd give hugs, pose for a picture, and then walk back to his seat and finish eating. And can I just say that we found out that Jayden has a huge crush on Minnie?? He gives her the sweetest look and the smile that shows both of his dimples. That was no different on this morning and he even followed her to give her one last hug before he came back to the table. I went to get him some more sausage links and when I got back to the table my mom was holding him. He was moaning in her arms, just very uncomfortable. Then his moaning got loader and suddenly stopped. His eyes rolled back and he tensed his limbs. It was as quick as 3 seconds but it exhausted him :( He was in and out of it for the rest of breakfast. He was still whining and pointing at Goofy and Pluto b/c he wanted his picture with them. I held him in those pictures and then when I sat back down, he crashed. The chef (who fixed Jayden's GF meal) came out to check on him and asked if we needed someone from first aid, but we figured he'd be ok. We sat at the table a while longer so that he could rest in the AC before we went out in the heat to either go back to the resort or head to Hollywood Studios. It's hard to tell with Jayden b/c he can pass out after a seizure and wake up like nothing ever happened and trust me you'd hate to be the one trapped in a resort with him once he gets up b/c it's like his little body has completely recharged and he cannot stop! He slept for about an hour in the restaurant and in the hotel lobby. When he woke up he was talking and pointing, even responding to questions. This usually means he's okay, so we caught the transport bus to Hollywood Studios. When we got to the gates he said "YAY!! Disney!!" We got a map and we 1st went on the movie ride (it's like a moving theater that rides you through different movie scenes). Jayden LOVES the movies! He got in his seat, which was right behind the driver and he pointed to himself and said "Hi, I Jayden Johnson!". He was SO ALERT on this ride and his face of shock had returned. At one point our driver got off and played in a scene and another person hopped on and "stole" our moving theater. Jayden looked at her with his eyebrows down and said "HEY!!" He was completely there so we had no reason to think that he was not okay. When the ride was over he stood up and clapped :) After that, we headed to the Muppet 3D show. We were trying to take advantage of everything that was indoors in AC until later, just in case. Well, in the Muppet 3D show, just in case actually happened. We used the handicap entrance (and can I say how guilty I felt pushing my child in a stroller through the handicap line with kids who were in wheelchairs??) and sat in the accessible rows which were right near the exit. He sat on my lap and then once the show started he got clammy and started crying. He kept saing "Ouch". I asked what hurt and he was very uncomfortable. His whining turned into crying. Sometime he throws up after a seizure so I thought maybe he was about to through up after his seizure he had that morning. I kept saying where's your bobo and he pointed to his head :( Then he had another seizure. Mike picked him up and sat on a bench against the wall to calm him down. Then we put him in his stroller and went straight to first aid. They gave us more ice packs and let us sit in there with him for as long as we needed. We decided that going back to the resort at that point wouldn't be the best option b/c it would mean bringing him in the heat to wait for the Disney transport, taking him out of the stroller to get on the bus, walking in the heat to the truck, etc. It was just too much stimulation when what he really needed to do was rest. So we sat there with him. First me, then my dad, while we took turns taking my niece around the park. She wouldn't smile though. She didn't want to go around the park, she wanted to be with Jayden. In the 1st aid center, another mom commented on how he was living the good life. Little did she know that he was actually suffering. We weren't in there just so he could get a nap in. He slept in the first aid center for about 30 minutes then woke up and watched the cartoons. When we got there to check on him my dad said that he was up for a long time but wasn't talking. That concerned us b/c it had been nearly 2 hours since the seizure. So I started asking him questions. He never answered any. Then I asked him if he wanted ice cream and all of a sudden he says "Let's go!" LOL! We took him to get his picture taken with Buzz and Woody and by the time he was done with that, Jayden was back and ENERGIZED. He was not listening, he was touching everything, he was singing, and he was begging for everything he saw! we went inside to the playhouse disney show and he was dancing all over and screaming "OH TOODLES!!" Yep he was refreshed!

Oh and there was lots of Ugly on our trip as well...
First lets talk about the Harry Potter ride!! The ride that many people waited in line for nearly 8 hours at a time when it first opened. We had a fast pass so we didn't wait nearly as long (maybe 10 minutes tops) but little did we'd be on the actual ride for well over an hour. We were riding and all of a sudden the sound stops and the rides comes to a stop. An announcer comes over the loud speaker and says something about technical difficulties. I thought it was a part of the ride as we were hanging there leaning forward with all of our weight on the chest bars. Then about 3 minutes later we are still sitting there and the lady says something else about technical difficulties and that they will be turning on the lights for us and moving our seats to a more comfortable position. 10 more minutes pass and then she comes on and says "I apologize but we are not able to move your seats at this time. We will be sending an emergency crew to evacuate the cars one by one. This evacuation process could take close to an hour to complete. Thank you for your continued patience." WOOOOOOW!!! So we just hung there. At first we tried to make light of the situation and we told jokes and got really acquainted with the guy who was in the car with us. But after hanging like that for over 30 minutes and no rescue in sight, panic started to sink in. My mom was getting a headache and I was getting claustrophobic. I used my mind to ward off two panic attacks that almost set in. I actually had to close my eyes and think of my somewhere totally different. It was AWFUL! But to make matters worse, when we were finally rescued after hanging there for over an hour, the ride staff was VERY NASTY to us. One person yelled at a rider for taking pictures with his phone. Then a lady yelled at me when I stopped to wait for my mom who was looking very sick and could barely walk straight, "THE EXIT IS RIGHT THERE KEEP IT MOVING!" No apologies or anything. We went to guest services and complained and they issued us an extra day in the park. We couldn't use the extra day but at least they did something about the matter. When we got back to the resort we found out that the Harry Potter ride has these technical issues very often. Just go on youtube and search for "Stuck on Harry potter ride". You'll find several videos. I guess the person who yelled at the guy for taking pictures didn't have the opportunity to catch all of the videos being made, LOL! Surprisingly, we also ran into some ugliness at a Disney Park. We were at Epcot and all of a sudden there was a huge downpour of rain. A huge crowd of people were running to the building to get out of the rain. Of course you have to expect to get bumped into. I was running and pushing Jayden's stroller when I mistakenly ran up on a woman's leg. She stopped and turned around and looked at me with the death stare. I said "I'm so sorry I'm just trying to get my son out of this rain." She continued to stare and wouldn't let me move and then I ended up being pushed by the crowd behind me and the stroller hit a man. He proceeded to turn around and yell at me in Spanish. It was a huge, ridiculous mess. I simply said "What do you expect to happen when a large crowd of people are running to the same place at the same time??" Goodness!! And finally, on our last day at the parks, Jayden's stroller tire went flat. It would not hold air in it so we had to use one of the rental strollers from the park. Poor Jayden was SO uncomfortable. Who wouldn't be?! Those stroller are awful! I was so upset, but thankful that this happened on our last day.

Looking back, I've learned so much on this trip. First of all, I don't think I had fully accepted just how bad Jayden's epilepsy is. I thought I did, but truly I hadn't until I looked back at the pictures on my camera. On the days where he was not having seizures, he has so much life in his eyes. On that day at Chef Mickey's, even before the first seizure, there was nothing. He just had a blank expression in every picture. Even if he smiled there was nothing behind the smile. That broke my heart. The seizures truly affect him in ways I never seemed to notice. I don't know why I never noticed it. Maybe b/c I want to wish it all away. But it is there and I need to accept it. Sure, it could be worse. He could be wheelchair bound like so many of the kids I saw at the parks. But the truth is, I should not feel any guilt for pushing him through the handicap entrance b/c he truly needs the accommodation. I always tell people that the seizures don't scare me much, I just feel really sorry for him when it happens b/c he's scared. Perhaps I was in shock or denial about ti all, b/c after this week, I am nervous and scared about them. I don't want him to have them anymore b/c I don't want to see him with that blank expression ever again. I don't want to imagine just how scared he must be or how much it must hurt him. I want them to stop. I've also realized just how much he NEEDS a stroller. He's 3.5 and 40 inches tall. You'd think that by now we could just toss the stroller, but I saw how his coordination is thrown way off well before he even has a seizure. There are days when I'm dragging him out to a store with me and he falls in the parking lots, or cries and says his head is hurting, and then later he has a seizure. He knows when they are coming, I don't. I think keeping him in a stroller would help both of us b/c I know how hard it is for me to walk when I'm dizzy and I also know how hard it is for me to have to carry him after he has a seizure and I am miles away from the truck. The hard part about that will be finding a stroller that's big enough to accommodate him, yet small enough for me to keep in our car or truck whenever we go someplace. I have learned that I need to carry a thermometer and Motrin with me at all times. He doesn't normally have febrile seizures (actually Thursday was the first time he had a fever before having a seizure), but I definitely need to make sure his temps are not going over 99.5 since he does have the seizure disorder. I also realize just how much we need this new neurologist to find out why he is having so many seizures and how we can better control them. We need some answers b/c he is still suffering. Sure the seizures are only 3-5 seconds long, but we have no way of knowing how strong and painful those 3-5 seconds are to him. They are obviously very strong b/c he passes out after. And not to mention how horrible he feels well before the seizure even happens. We need answers and I pray that this Dr can help him. we meet with her on the 26th of this month. I've learned that it's time for me to accept that my child has a disability and I need to make changes in our life to make his life easier. I can and I will do it for him. He deserves it.

All in all, our family vacation was a huge success!!

Kids say the darndest things...

2010-07-23T13:12:00.002-05:00

at the darndest times!

Well, in our case, Jayden shows us just how great his communication skills have grown at the craziest moments! Take this morning for instance... Yesterday Jayden took a spill at summer camp and bust his lip pretty bad and also pushed his tooth back. On the drive home I was asking him about his boo boo. He is very echolaic (repeats the last word anyone says), so we hardly ever can get him to appropriately answer a question. So the conversation went like this:

Me: Jayden do you have a boo boo?
Jayden :A boo boo (points to his lip)
Me: Aw...does it hurt?
Jayden: Hurt.
Me: Did you fall down?
Jayden: Down.
Me: Did you cry?
Jayden: Cry.
Me: Aww, baby I'm sorry!
Jayden: Sowwy
But since I knew he could answer this one...
Me:Are you ok?
Jayden: I fine!

So anyway, the dentist wanted us to bring him in for x rays of his front teeth to check for fractures or any damage to the permanent teeth. The dentist came in the room and Jayden (who had made himself at home in the chair and even took off his shoes!!) was ready to show the Dr his boo boo. So here's their conversation...

Dentist: Hi Jayden, how are you?
Jayden: I fine.
Dentist: Do you have a boo boo?
Jayden: A boo boo. (points to his mouth)
Dentist: How did you get that boo boo?
Jayden: AT SCHOOL!
Me and Mike: {JAW DROPS!!}

Yeah. So we just looked at each other and I'm pretty sure I said aloud, "WOW!" Judging from the convo he held above, I bet the dentists didn't even have a clue that Jayden has a speech delay! Now this doesn't happen often and many times people ask him questions that he doesn't understand so he gets echolaic and they look to us with question mark faces. But there are moments like these where he surprises us! It gives me so much hope for his future :)

P.S. His x rays turned out fine. There was no damage to the baby tooth and none to the permanent teeth (they look like they will be HUGE though, lol!). He'll go back in 3 weeks for a cleaning and I am going to talk to his neurologist about the increase in falling and coordination. He walked into the wall at the dentist's office this morning!

The Blame Game

2010-07-17T15:03:00.004-05:00

The Blame Game...It's a game I play with myself in my head quite often. I admit it. I have so many people (even the professionals) who remind me very often that there was NOTHING I did wrong to cause Jayden all of the pain and suffering he's already had to deal with so early on in life. I even have genetics testing results that agree that he is genetically disposed to each and every one of his issues, including the Celiac Disease. Even with this reassurance that it wasn't my fault, I can't help but think about things in the past that make me wonder if it could have gone differently. Like when he fell out of the bed and 6 months old and hit his head really hard on the ceramic floors. He actually started to throw up. We called urgent care and they told us that if he wasn't lethargic (he wasn't) we didn't need to worry. Honestly, I never stopped worrying since that day! He's had CT scans recently due to the seizures and he's even had an MRI. The results show nothing of extreme concern and I was relieved to know that his skull was not injured when he fell at 6 months old ;) I also read that untreated Celiac Disease could lead to childhood epilepsy and cancer. I always wonder if maybe I didn't fight the GI Drs hard enough to get him the care he needed and the diagnosis that I knew was inevitable. For a few months, I ignored my mommy gut and waited until things got worse with the blood in his urine and stool and the weight loss. I wonder if perhaps I would not have just gave in and listened to the Dr would told me that Jayden was just a "happy spitter" with a mild case of acid reflux and "there is no need to have him on a special diet", then maybe we could have avoided the childhood epilepsy. On a side note, I do want to PRAISE GOD that we are dealing with the epilepsy and NOT the cancer. I cannot tell you how nervous I was waiting for the MRI results. I wonder if perhaps I allowed him to watch too much television. From the very beginning, Jayden was VERY independent and he much rathered playing by himself instead of with me or his daddy (in hindsight, this was a red flag for autism), so I also wonder about that. I'm not an "in your face" mom and perhaps I should have been.

Of all of those thoughts, one I can't seem to shake are the immunizations he rec'd as an infant. I ALWAYS ask myself if he would have benefited from an alternative vaccination schedule. Jayden is our first child and we never questioned vaccines. As far as we were concerned, we both had vaccines and we turned out ok (for the most part!) and also, we were protecting him from very harmful childhood diseases. But could the very things that we thought were protecting him be the source of all of his issues? The Celiac Disease automatically weakens his immune system. The ingestion of gluten weakens it even more. Children with weakened immune systems should follow an alternative vaccine schedule. Jayden has genetic markers for Celiac disease so he was born with it. He's been gluten intolerant since he was born, which would explain all of the GI issues that became apparent at only 7 days old. What's even more interesting is that although Jayden had been getting his vaccines on time as an infant, his development was perfectly fine up to 15 months old. He sat up at 5.5 months, crawled not too long after that, walked at 10 months, and had a vocabulary of about 10 words by 18 months. Also around 10 months old, we introduced table foods (as opposed to jarred baby foods) so he was indeed getting gluten. As a toddler, his favorite food to eat was BREAD. Bread is a huge no no for people with Celiac disease. Jayden would eat bread all.day.long. So at that time, his immune system was becoming weaker. At 15 months old he got the MMR, varicella, and 1st Hep A immunization. Looking back at my blog posts, this is when his behaviors started to get violent and I assumed he had a terribly early case of the terrible two's. At 18 months, he had his 2nd half of the Hep A shot. About 2 days later, we traveled to Memphis where he spiked a fever of 105.6. At the ER, they gave him some Motrin and told us to undress him. They put us in a room where Jayden pretended to eat food from the bed (hallucinating??) and "swim". We never saw a Dr nor a nurse. We sat there for close to two hours. I asked what the hold up was and we were told that there were several "more severe" cases before him. I asked for them to give me what I needed to leave the hospital and we left without treatment. The nurse made sure to say "Oh he looks much better now". Yeah b/c his fever went down with the Motrin but you never bothered to find out why it spiked so high. So of course we took him back to the hotel and it spiked again. All weekend his fever continued to got as high as 105 whenever the meds wore off. We took him to the pedi where he was diagnosed with a virus and given antibiotics. 2 days later (on my 28th bday) he stopped eating, drinking, and talking and the fevers returned with a vengeance. They immediately put him in the hospital and he stayed for 3 days. After that hospital stay, his development went downhill. He lost more than half of his words, his behavior was out of control and he was having what I noticed were sensory issues. That's when our fighting started. When I think about it long enough, I truly want to blame the vaccines...But then I am slapped with the reality that is that Jayden has a genetic disorder. The chromosome that he is missing predisposed him to EVERYTHING that he is dealing with. Perhaps the vaccines set it all off, but he wasn't going to avoid the issues for long at all.

With all of that said, if there was something I could have done differently, would I? I thought about the answer to that question long and hard and the honest answer is NO! Although I would LOVE to not have to watch Jayden struggle with everyday things like running, eating, communicating, and just playing outside. And I would love for him to not be the target of the cruel younger kids who notice that he cannot talk so he cannot defend himself if they pick on him. And I would love for him to not have to leave birthday parties early if there is no gluten free cupcake available for him to eat during cake time. Despite all of this, I wouldn't change the child that he is...my strong boy who never gives up, no matter how hard a simple task is for him and when he does it he throws his little fists in the air and says "YAY!! I DID IT!!" My brave boy who gets pushed down and teased alot, but he never lets it affect how far he's come socially and he continues to play with the kids until they understand that he's just as fun as the other kids are. My smart boy who knows when anything in any room has been moved and he expresses his concerns immediately. My happy boy who does silly things on purpose to make others smile. My momma's boy who, despite his independence, always find the time to run to mommy and give her his signature hug and kiss. My respectful boy who says "bless you" when ANYONE sneezes, "Excuse me" when he burps or passes gas, "Sorry" in sign language when he hurts someone, "Thank you" when someone holds a door for us or brings his food to a table, "Hi, How u doin??" whenever someone walks up to us, and "Are u ok? I kiss it." when someone has a "boo boo". All of this, no one expected him to be able to do b/c of his autism and the epilepsy that is still not completely under control. However, he's doing it everyday! We have learned not to take a single day for granted. We love watching him grow and learn new things. I won't lie, it still hurts everyday to watch him struggle (the photo toxicity is a big issues right now preventing him from playing outside)and miss out on things that most kids his age are doing. But we do make special accommodations for him when we can. So far this summer he's been to Safari Camp, 2 dive in movies, several birthday parties, and swimming lessons. Next week he's going to Disney World (with a special stroller to block the sun and LOADS of adaptive equipment to hopefully prevent seizures). My hope is that he will grow up and think back to his childhood days and not feel like he missed a single thing! And I want him to blame it all on US!

Just a little acid

2010-07-08T14:17:00.003-05:00

Jayden's biopsy results came in and as far as the Celiac Disease goes, he it doing ABSOLUTELY FINE!! His intestines have healed, his villi are no longer flattened, and he no longer has inflammation in his intestines. The biopsy taken from his stomach, however, did show some scarring and acid wear so he is back on Prevacid for his acid reflux. The Dr is hoping that once the acid is neutralized in his tummy, he will have more of an appetite and that will help him to put on some weight. We have to continue with the high calorie diet as well. But to me, that is the BEST news ever! I mean to hear that he is healed from the Celiac Disease that was left untreated for 2.5 yrs?! Wonderful! Of course, in order for him to remain healed he has to remain on the Gluten Free diet for the rest of his life, but it has become very easy for us so I know he will do well. The reflux was no surprise b/c he's been dealing with that since birth, so I'm hoping that by putting him back on prevacid, we will help his stomach pains.

Everything else around here has been great! I had my sinus surgery on Tuesday and I'm pretty much pain free with the exception of the sinus congestion and strict instructions to NOT blow my nose and NOT to take decongestants!! The only thing I can take for pain is Vicodan. So needless to say, I deal with the discomfort during the day and pop a Vicodan so I can get some sleep at night. Oh and in case you were wondering, sneezing through your mouth is not an easy task, especially when you are known to sneeze at least 5 times in a row!

We signed Jayden up for swimming lessons starting next Monday. He is SO EXCITED! We only set him up for 2 classes a week and it's a 3 week course, so I'm hoping 6 classes is enough for him. My husband says that it will be more than enough b/c Jayden is already so comfortable with the water. He dives into the deep end (with a life vest on) and he also does back flips into the pool. He kicks his feet and pulls himself through the water with his arms. He also holds his breath and puts his own face underwater. So he is very comfortable. I would love for him to be able to swim without his life vest when we got to Orlando in a few weeks, so I'll ask the instructor what she thinks and if we feel we need to we will add a 3rd day to his weekly lessons.

6 years ago today...

2010-07-03T14:26:00.001-05:00

One of the happiest days of my life!!

A healthy belly

2010-07-01T16:29:00.002-05:00

Jayden's EGD went well this morning. Once he was done, the Dr came out and spoke with us and showed us the pictures she took. Absolutely perfect. No more ulcers. No more inflammation. And from the looks of it, she said his villi look healed, but she will get a closer look at the tissue samples she took and get us the results next week. So far, so good! It's kind of bittersweet though b/c if the biopsies come back perfectly normal as well, then he will need more tests done to figure out why he is not gaining any weight and why he has so much stomach pain.

He woke up from anesthesia just fine. Much better than last time! I was able to hold him and comfort him and as he came to, he got angry about the tape on his thumb (the O2 monitor!) b/c he wanted to suck it. The nurse gave him a popsicle instead and he was a happy camper. When he was done he yelled "Doctor!!! More peese!" You know she gave him seconds :) Once he was finally discharged he really wanted to get down and walk/run but his coordination was WAY off so we had to carry him. Now he's napping off the rest of the anesthesia, but all in all it was just fine!

Unfortunately, my aunt did pass away early this morning. The funeral is being arranged and will take place in the middle of this month. RIP Auntie Laurel. We miss you already!

So this is how it feels...

2010-06-30T16:26:00.002-05:00

to have too much on your plate. Tomorrow is Jayden's EGD w/ biopsy. Saturday is my 6 yr wedding anniversary. Sunday is the 4th of July. Tuesday I have my outpatient sinus surgery. Next Saturday is my niece's 13th bday slumber party that I am giving her. In between all of that, Jayden has several doctor's appointments and so do I. And if that weren't enough, my aunt has been fighting terminal cancer for a few months now and is now dying. The doctor does not expect her to live through the night. The month hasn't even started yet and I'm so ready for it to be over already :(

Please keep my baby in your prayers and also my family, as they are having a hard time accepting my aunt's death.

Cousins

2010-06-29T12:19:00.003-05:00

Jayden and Alivia. Alivia is my sister's daugther. She is 3 months younger than Jayden. My sister and I were so excited when I adopted Jayden and we knew that our kids would be close in age. We just knew they would be the best of friends, just like we are. We were so hopeful. Unfortunately, it didn't start out that way. They did play well as infants, but as they grew older Jayden experienced developmental delays and behavior problems that affected his social skills. Due to his sensory seeking issues, he plays VERY rough. He doesn't know of another way to play although he has gotten so much better this year. He is also very uncoordinated, so playing games like tag are tough for him b/c he doesn't know how to run without running into people. And when he runs into other kids, it scares them. Alivia was scared of Jayden. She always thought that Jayden was trying to hurt her, so she stayed away from him. Whenever we would get them together to play, Livy would stand to the side and just watch. We would give Jayden reminders on playing gently and he would bring a toy to Alivia and she would run from him thinking he was coming to hit her with a toy. I don't know how it felt for my sister, but it hurt me to think that my niece was afraid of my son. I didn't like that she was afraid and couldn't enjoy herself when he was around, and I didn't like that he was misunderstood. Don't get me wrong, I know that Jayden will often be misunderstood b/c of his issues, but when I can, I want to help him be understood...especially when we are talking about family. At 3 yrs old, both kids are at the age where they can understand to a certain degree, so I had a good talk with Jayden the past few times he's been over to play with Livy or she's come over to play with him. I reminded him just before walking through the door that Livy does not wrestle and she does not like to play rough. He would say ok and I could actually see him attempting to play nice with Livy. Now, with Alivia, I knew it was more important to have a good talk with her to help ease her fears. I told her that Jayden does play rough and at times, he may scare her, but he truly doesn't mean it. She said "That's ok!" :) It's only been a few weeks and now they ask for each other. We all went out to diner last night and Livy came over to play for a few minutes before we went to the restaurant. They played with the play kitchen, taking turns cooking. Jayden gave Alivia his Ironman toy to play with (gasp!!). And at one point, he went to his toy box and wanted to show her his Buzz Lightyear toy...She happened to be standing right there when he grabbed the toy and slung it around very quickly and the plastic wing hit her on the head. She grabbed her head and said "Ouch" and her mom immediately told her "It's ok Livy he didn't mean it" and I immediately told Jayden to remember to be careful and that we should play with the stuffed Buzz instead of the plastic one so no one gets hurt. He is a rough guy, so we have soft toys for playdates ;) Jayden put Buzz away and then turned to Alivia and did the sign language for "sorry" and gave her a hug. Then off we went to dinner and they had a blast. They played in the waiting area and Alivia shared her HUGE imagination with Jayden. When dinner was over they didn't want to go their separate ways. Jayden actually woke up saying "Where Yeeyah??" :)I am so very proud of his progress and proud of my niece for actually overcoming her fear so quickly.

Blogger Blessings

2010-06-28T16:02:00.004-05:00

I love blogs. These days, you can find a blog based on anything you come across in your life. I've found blogs on adoption. Blogs of moms with children who have Celiac. Blogs of moms with epileptic children. Blogs of photographers. Blogs of Stay at home moms. Blogs of moms with autistic kids. Blogs about going green. You name it, I bet you can find a blog on it.

I love blogging. I started back in 2006, just before we adopted Jayden. I used it as an online journal of sorts. I don't think I had many readers at all, but that wasn't important to me at the time. My main goal was to jot down things as they happened during our adoption process, so that I wouldn't forget them. Then when Jayden came home, I continued to use it as a journal. My few readers (as far as I knew) were my friends from the adoption forum. I loved having readers, but still, my main goal was to write down memories. By the time Jayden was a year old, we noticed behavior problems and developmental delays. Every Dr we saw, asked for a detailed history: when did he sleep through the night, when did he say his first word, take his first steps, answer to his name, etc. I didn't have to think long and hard on this b/c it was all on the blog. In fact, just by re reading the blog entries, I saw that Jayden presented several red flags for autism. I had no idea that everything I'd blogged about, just for memories, would serve as the greatest tool to get Jayden the help he needed. At that point, blogging took on a whole new meaning for me. Not only is it excellent for journal purposes, but the ability to reach out to those parents who, like me, searched and searched the internet for answers and only found the broad description of what "could" be wrong with their child. I would much rather hear from an actual person who has been there, done that. And I've found that in blogging.

Through my blog, I've met and actually become good friends with a few people who have found my blog. Many have similar situations and some just want to be there for support. I truly appreciate them! I know I've come across some bloggers who hesitate to put out too much personal information on the web about their child's condition. I can totally understand that b/c the web can be a scary place. At one point, I even took to censoring things I said about Jayden here on my blog, but then I didn't really like blogging as much. I feel that by being completely honest about Jayden's condition, I can possibly help other parents who find themselves in similar condition. And not only that...perhaps someone reading my blog could offer some life altering advice to ME for Jayden! It just recently happened for a fellow blogging friend of mine :)

Last week, Lyndsay shared on her blog some strange facial tics that her 2 yr old started having all of a sudden. She has been fighting for some time now to figure out why his asthma was so bad and not improving with medications. Her mommy instinct told her that there was a missing piece that the Drs weren't finding. She blogged about their rough days and through those posts, she had several people praying for her. Little did she know that she actually had someone searching the internet, on her behalf, to help her to help her baby! This person sent Lyndsay an email in the middle of the night with information that would essentially be the MISSING PIECE to her son's health issues! In less than 48 hours of receiving that email and following the advice given in the link, her son made a 100% recovery AT HOME! What a blessing!!

What I believe makes this so special is that Lyndsay didn't blog about the issues expecting someone to email her with a cure. I'm sure she blogged about it b/c it was heavy on her mind (who wants to watch their baby suffer??) and she wanted prayers and some support. But for someone to actually send her a cure?! That's a blessing!! And had she not been so honest with her son's health issues, it would have been a cure that was left under the covers, probably never to be found. I am so happy for Lyndsay and so thankful to the young lady who sent that information to her in her time of need.

This just goes to show you that you never know WHO is reading your blogs and exactly what their intentions are. I love my blog and appreciate all of my followers and readers, whoever they are. BLOGGING ROCKS!!

Bad Blogger

2010-06-26T07:59:00.003-05:00

Sigh. My goal was to update this blog a few times each week, if not everyday. Mainly because I use this as a journal to keep track of the things Jayden does to amaze me EVERYDAY. There are things that I never want to forget. There are also things that I would love to forget, yet because it is so significant (like the 60+ seizures he had in 2 days)I want to remember it. But, as usual, life got in the way. This month has been SUPER busy for us. Every week of June, either Jayden or myself has had a Drs appt or two (or three!). I tried to squeeze in swimming, gym time, my at home business, my photography, and even playgroup time (yeah that didn't work out so well when I read the dates wrong on the calendar and Jayden and I were the only ones at Chuck E Cheese at 9am!!). The entire month was just like a run on sentence. No end in sight. Also, I had the big 30th birthday. Party and all. It was lots of fun! A nice break from the hustle and bustle that is life. But after the party was over, it was time to head back into reality.

Jayden had a developmental followup the week before my birthday. It was a wonderful followup. The Dr recorded that Jayden has shown significant improvement in all areas of his development. Eye contact is perfect and his social anxiety seems to be a thing of the past. He interacted with the Dr and the resident. His attention span is still terribly short so that caused him to score quite low on the cognitive level and his speech scored at a 23 month old level, but he has improved so much that the Dr feels that the autism diagnosis is no longer warranted. She feels that his delays are largely due to the chromosome deletion which is known to cause global developmental delays, along with a host of other problems, which he does present with. She feels that with continued therapy services, and the care of a good neurologist and GI for his Epilepsy and Celiac, he will be just fine!

On this past Tuesday, he had a followup with his GI Dr. Just to show you how jam packed our month was, I had NO IDEA he had a followup with his GI this month. When I got the recorded message that he had an appt, I had to call back and ask them WHO he had an appt with! Unfortunately, this appt didn't go as well as the appt the week before had gone. As you know, when Jayden was hospitalized in April for his seizures, he'd lost 6lbs. He went from 35lbs to 29lbs and this was in the beginning of April. The GI doc was very concerned with this b/c of his celiac and b/c he does not have the best appetite at all. By the time we went to see her for a followup in May and to see the dietitian, he was up to 33lbs, but she still was not happy with that so the dietitian had us to start giving him pediasure and gave me a list of fatty foods to feed him. He's been drinking the pediasure just fine and I've been adding chocolate syrup to it. However, his appetite is still just not there. Getting him to take more than 3 bites of baked beans in a 24 hour period is a struggle. So when he went in on Tuesday (6 week followup), he still weighed in at 33lbs. The Dr said he had only gained an ounce and there's the possibility that he actually lost some weight depending on what he was wearing. She was expecting him to at least be back at 35lbs after the 6 weeks of increased calories (and I have been pushing and counting calories). He was also in tears and bent over, crying in pain during the appt, so she's concerned about his stomach. He will be having an EGD w/ biopsy done soon. She wants to check the condition of his intestines and his esophagus. Jayden is NOT underweight. The concern lies in the fact that he has lost a significant amount of weight and he cannot gain it back. Celiac Disease and weight loss (in a toddler) is not a good thing, so she just needs to have a closer look. I hate to have him put under anesthesia again, as I can still clearly remember how hard it was for me to watch him struggle until he went under the last time :( But, like every other mother, I hate to see him suffer everyday. I want him to know what it's like to have a tummy that does not hurt everyday. He deserves it.

And I will end this post with some really good news! You know the language explosion that many moms say happens around 18-20 months of age? Well it looks like it finally found it's way to our residence! We've been waiting nearly 2 yrs for this moment! A few weeks ago, Jayden was in his booster seat and was ready to get down, so he started to yell "DOWN DOWN!" like he usually does. Before I could get to him he closed his eyes tight, as if to concentrate, and then he opened them and said "Mommeeeee, I want...to...GET DOWN!!" Mike and I just looked at each other. And the phrases have been coming ever since, out of nowhere. Last week we were driving to my aunts house and we stopped at a red light and Jayden said "Mommeeee, I want to watch a movie." Again, Mike and I just looked at each other. The other day at the hotel, Jayden got off the elevator and there was a lady waiting to get on and Jayden looked up at her and said "How you do-eeen?" and the lady replied "I'm fine sweetie!" OMG. Other things he has said to shock us..."Mommy, I hot!" "I don't want to do it!" "What you do-een?" "Where we go-een?" and this one we really couldn't believe "Mommy, I hungry!!" Don't get me wrong, the phrases are little gems that he presents us with rarely, but everyday which is BIG for him. He still does ALOT of meaningFUL (it means alot to me!) gibberish, but he is trying. Every mom I've come across who knows about Jayden's speech delay would tell me "Don't rush it because once he starts talking you will want him to be quiet." I know it's just their way of making me feel okay about the situation, but I am happy to kindly say that they were WRONG! In fact, when Jayden talks, I drop whatever it is that I am doing and I answer his questions over and over and I encourage him to continue. The fact of the matter is that when my baby talks, I never want it to end :)

Pain in the neck!!

2010-06-14T09:45:00.006-05:00

So sorry that I haven't been updating the blog as well lately! The past few weeks have been a whirlwind. Between my photography and my new home business picking up, and Drs appts for both myself and Jayden, it has been crazy!! Despite how busy our schedule has been, I'm so glad I took the time out to see the Dr and stopped ignoring my pains.

First off, I was sent to an ENT a few months ago for chronic sinus infections and migraines. I wasn't surprised when the Dr gasped at the size of my sinuses and couldn't understand how I could actually breathe through my nose without much effort. Honestly, they've been like that since I was very young and I truly thought it was normal. I guess I adjusted to it. Anyway, he started me on a non steroidal nasal spray for 6 weeks. After 6 weeks, I was scheduled to go back for a CT scan of my sinuses to see if the spray helped the inflammation. Well, the CT scan showed no change in the inflammation and also a small cyst inside on of my sinus cavities. OUCH. So I have to have sinus surgery on July 6. The ENT told me that it's only a week recovery, with the first 2 days being the worse b/c my nose will be completely plugged. That's my worse fear, not being able to breathe out of my nose. My second worse fear is being head butted in the nose by my son during recovery!

So, while that news was certainly an inconvenience, I knew it could have been worse. And, yeah, it did get worse. Back in April, I went to my GP for lower back pain that I'd been having for months. I ignored it for so long b/c I thought I'd pulled a muscle, but then I noticed that it wasn't hurting everyday and when it did hurt, it came on all of a sudden and I couldn't find any relief. The Dr sent me for X rays and when those came back with abnormalities, she sent me for an MRI of my entire spine. The results surprised me. My lower back is just fine, with the exception of the scoliosis I've had since birth, but my neck is what's showing signs of spinal stenosis (narrowing of the spine). My understanding (from my GP's explanation) was that the narrowing of my cervical spine was causing a disc to bulge and press on my nerves, causing the pain in my lower back. I did find it odd that there was NO pain at all in my neck. My Dr sent me to a physical medicine Dr to discuss treatment options and pain management. Well that appt was this past Friday, and I was NOT prepared for what I was about to be told. First, she did a full range of motion assessment on me and she was surprised that I had no weakness in any limbs and no pain at all in my neck. Only in my lower back. She had me to stand up and she looked at my back and immediately saw the scoliosis which she said is pretty moderate and the curve in my spine is what's causing my lower back pain b/c my muscles on one side are very tight. She wants to me to go to physical therapy and to take a muscle relaxer every night for 2 weeks, to see if it helps to loosen up my muscles and stop some of the pain I've been in.

Ok, simple enough, and not a shocker b/c I've been knowing about my scoliosis. But then the Dr says "However, that's not why you are here." HUH?! WHAT?? She said "Your MRI results are pretty bad and rare for someone your age." At this point I'm just like, Ok... Then she said, "Based on your MRI results, I need to be referring you to a surgeon and when a surgeon sees the results he will recommend surgery." Speechless. Then she says, "But you are not having ANY symptoms at all. All of the pain you are having is due to your scoliosis. If you hadn't complained of that pain, we wouldn't have found the problems in your neck." Me, sitting there nodding in agreement and astonishment. Then she says, "Well, at your age, I don't want to send you to a surgeon if you aren't experiencing any symptoms b/c it is a very risky surgery on the spine and I've had colleagues who had the surgery and were worse off after having it done. Right now, all of your limbs are strong, your reflexes are fine, your muscle tone is great, so I don't want to risk messing any of that up." I agreed! She continued, "However, you need to be aware that your cervical spine is VERY narrow and fragile. A collision or a bad fall could cause your neck to break and you can become paralyzed." At that point I was just staring at her... She gave me all of the symptoms to be aware of and told me as soon as I started to feel any of these symptoms, I need to give her a call and she will call in the referral to the surgeon.

Wow. I seriously think I'm still in shock and denial about this. A week away from turning 30 and I find out that my spine is very fragile. My mom has already called me to tell me a laundry list of things that she doesn't want me to do. One of the things included no more roller coasters!! :( And she also suggested I drive with a neck brace on. HA! Yeah that will happen. I've decided to just give it to God b/c those pictures may show that my neck is narrow and fragile, but I have no symptoms proving that point. I bet my neck is stronger than the Drs think it is. For now, I've added some Calcium and Vitamin D supplements to my diet and life will go on. I wonder what types of household chores I can get out of b/c of this....

Poor response to vaccines

2010-06-01T15:49:00.003-05:00

On Friday afternoon, we had our followup with the immunologist to discuss the results to Jayden's bloodwork. In Layman's terms, Jayden's immune system is compromised. Several values remained low and in one area, an entire group of bacteria that he should have built up a tolerance against from his vaccinations showed that he is EXTREMELY susceptible to them. The Dr explained that these results showed that Jayden did not respond well to the vaccine. We discussed more about what could happen if his immune system was left this way (recurrent pneumonia, RSV, strep, meningitis etc) and our alternatives. We decided to let him get the pneumovax vaccine. He will go to the lab in 4 weeks to have the blood tests done again to re evaluate his immune system. If the numbers are higher, then great! He'll just have to have his immune system checked once every 5 yrs and have the vaccine repeated if need be. However, if his numbers remain low, then we can confirm that his immune system is not responding properly and he will need immunotherapy. The good news is that his levels ARE PRESENT so no matter the result, we will have a solution and it's definitely not life threatening, thank you Lord. We are certainly hoping for a positive response to the pneumovax, but if not, I am glad to know that there are options for him!

Memorial Day

2010-05-31T11:23:00.002-05:00

On this day, I realize that I am truly blessed. My husband served in the US Air Force for 20 years. He left to defend his country just months after graduating high school. He's been sent overseas to fight for our freedom several times, including Afghanistan after 9/11. He's lost friends. He watched (and still is watching) friends suffer with PTSD (post traumatic stress disorder). He has friends who are missing limbs. He also has friends who didn't lose their lives or limbs, but lost their families b/c deployment does get rough on us military spouses. I'm blessed b/c after 20 yrs of serving this country, my husband is alive and well and we are still madly in love with each other. In fact, I actually miss the Air Force! The comradery, the annuals, the award banquets, the love we all had for each other. I'm still in touch with several military wives I've met over the years and they are truly some of my best friends (Mechelle, if you are reading this I LOVE YOU!!).

However, I know that this is not a happy day for everyone around the world. Today, for some families, it's a day of mourning. Somewhere, a mother is mourning the loss of her young son. A father is missing his daughter, but proud of what she has done for our country. A wife is now a single mother. Never had a chance to kiss her soldier goodbye. A little boy holds a picture of his mother, the only memory he will ever have of who she was. Initially, the title of this blog was going to read Happy Memorial Day, in I realize that today is definitely not a very happy day for many people. They are all in my prayers. Thank you to all of those who have fought for our freedom, those who gave their lives to our freedom, and those who are fighting for our freedom at this very moment.

What a weekend!!

2010-05-25T10:48:00.003-05:00

We had a wonderfully busy weekend over here! One of my best friends turned 30 on Sunday (wow, we are all turning 30 this year!), so she threw herself a birthday party on Saturday. Friday, I helped her run a few errands while Jayden stayed home with Daddy so he could take a nap. Friday evening, I picked up Jayden and we headed back to my friend's house to finish fixing the food for the party. I had a great time with her and Jayden played like such a big boy with her nieces. Saturday, we headed to the party and I got a speeding ticket on the way there! Great way to ruin my day :( I was actually going with the flow of traffic and failed to keep an eye on my speedometer (am I the only one who does that??), but when I saw the cop car, I glanced down and saw that I was speeding so I slowed down and I guess it made me quite obvious...The cop pulled me over and made me get out of the truck. Fun times. I took my speeding ticket and continued on my way to the party. Jayden was a tornado, to say the least. He wanted to play outside, but as soon as he got outside he would realize how hot it was and come right back inside. Then, once inside, he decided he wanted to go play outside. This went on the entire time! Over and over and over. He eventually got his little toes closed in the door :(

As you know, b/c of Jayden's Celiac Disease, birthday parties can prove to be a bit rough for Jayden as far as food selection goes. And a biggie is always the birthday cake! What kid doesn't want cake?? Jayden, however, seems to be getting used to our routine. Sing happy birthday and then come to mommy to get his gluten free cupcake. He sat on the side and devoured his cupcake. After a while, we had to pack up and head over to the next birthday party. We got to this praty just a few minutes before they sang Happy Birthday. I lost sight of Jayden and when I found him he had helped himself to a plate and a fork and was pacing around the cake table! lol!! And then it hit me...DAMMIT! I'd only packed ONE gluten free cupcake. I ran to ask a friend of mine if they had any popsicles, or anything as delicious as that cake (in a child's eyes) that would appease Jayden, but all she had was ice cream. I believe that Jayden is lactose intolerant, even though the dietician says it's not likely, so I carry around lactaid supplements just in case. I ran to his bag for the lactaid and there weren't any in there! He was in line waiting for cake! I had no idea what to do other than to leave the party that we had just arrived at. I decided to give him just a spoon full of icing from the cake (buttercream icing made with powdered sugar) and a scoop of ice cream, praying that the dietician was correct. He devoured it, and was satisfied and enjoyed the rest of the party.

Sunday morning he woke up complaining about his tummy. This is usual for Jayden b/c he still has constipation issues and the day that he finally has a BM, his tummy hurts. But this was different. He was clammy and he would cry and run to find me with his shirt held up saying "Tummy!!!" I would kiss his tummy and he would walk away still, looking sad. The pain would come in spurts and hit him all of a sudden so I knew it was stomach cramps. He was miserable all day and could hardly eat anything. That evening my husband and Jayden came with me to an outdoor photo shoot and Jayden was going to feed the ducks while I did the shoot. Well when we got there, Jayden was crying and moaning. My husband took him out of his seat and laid him across the back seat and rubbed his back. A few minutes later, Jayden moaned and rolled over to his hands and knees and lets just say that in the end, I had to throw away a pair of shorts, underwear, a towel, and a blanket that we were using to cover his neck from the sun! It was bad, but Jayden felt better immediately. I had packed an extra set of clothes and a pullup, just in case, so he didn't have to run around bottomless! Monday, he still had a few stomach cramps, but he's been much better since then and is at summer camp today. I really do believe that it was the ice cream that hurt his tummy so badly. Sometimes, you just have to follow your gut.

5 Things to consider when working from home

2010-05-20T13:52:00.002-05:00

Here are FIVE points to consider when you are searching for work from home:

1. How long has the company been in business and what is their track record?

2. How much does it cost to get started and is it fully refundable?

3. How are you required to build your business? Will you need to buy inventory, host parties, take orders, and deliver products?

4. What kind of products are you going to sell? How often will your customers purchase something?

5. What kind of support and training will you receive?

These are all valid, important questions to ask yourself when you are searching for a home based business. There are many companies to choose from with great products. However, there are some key differences that will ultimately determine how successful you can be with that company.

I joined up with Internet CEO Moms just a few weeks ago and it is already proving to be a great decision for me and my family. I'd like to answer these 5 questions as it relates to our business.

1. The company we are teamed up with has been in business for 25 years and has received numerous awards over the years. They are completely debt free and currently expanding their business while other companies are struggling in the current economy.

2. It costs $29 to get started and is fully, 100% refundable.

3. We DO NOT host parties, carry inventory, take orders, make deliveries, etc. All we do is open customer accounts.

4. We promote basic necessity products that are all eco-friendly and healthier and our customers shop every month for the basic items they need for their own family.

5. Our team provides you with a tremendous amount of support and training that will allow you to build your business truly, completely from home.

This is truly a win-win situation for us and I am PROUD to represent our team and the company we work with. With all of the scams surrounding work from home opportunities, it's refreshing to know that a mom can truly work from home without having to first shell out hundreds of dollars before seeing a return on it. I have been blessed and would love to share this team with moms everywhere, who would love to bring in some extra money or even replace a full time income in order to stay at home with the kids! If you are looking for a legitimate work from home opportunity, I encourage you to simply set a time to view the 15 minute webcast so you can see for yourself what a wonderful opportunity this is. www.blessed2behome.com

My sensitive boy

2010-05-19T14:59:00.005-05:00

Ever since Jayden was released from the hospital in April, we've noticed that he is VERY sensitive to the sunlight. He hates for it to touch his skin. I figured it was just him getting used to the change in climate, but now it's getting worse and worse. He RUNS to find shade now. And when the sun touches his skin he immediately starts crying, scratching, and fidgeting really badly. Today we had to run into walmart and he was crying and grabbing at his neck and then tried to stick his head under my shirt. And when we put him in his carseat he cries in pain if the sun is on it. And his car seat is cloth so it cannot burn him. we've tried putting hats on him but he still complains about the back of his neck and his legs and arms. I cannot dress him in long sleeves and pants in the summer temps! He starts summer camp next week and I'm worrid about how he will tolerate it. At school, their playground is shaded. I'm not quite sure about the playground at camp, so I will have to let the camp counselor know. It seems like it's one thing after the other with my poor boy. Because of this, we are considering canceling our annual trip to Disney World in August. There is no way he will be able to handle being in the sun for hours and we would just be asking for him to have seizures. We are going to go in November instead. J has an appt to see his neurologist next week and I plan to bring this up to him b/c at this point I don't know if it is a side effect of the meds or if it's just something that comes with epilepsy. I'm sad to think of him spending his summer indoors.

Progress!!

2010-05-18T09:44:00.003-05:00

Jayden literally SURPRISED everyone this morning! He doesn't usually go to school on Tuesdays, but his teacher asked me to switch up his schedule a bit for this last week b/c none of his classmates were coming on Friday. So I got him dressed this morning and on the ride to school I said "Your friends are going to be so surprised to see you today!" He just smiled, and continued to complain about the sun shining on his neck. LOL! We got to school, and normally what happens is Jayden will walk with me to the cafeteria and even open the door himself and walk right in, but the minute that he sees his class, he falls out on the floor! We've had maybe 3 good mornings where he went without a fuss, but usually he likes to perform. Well this morning he turned around and gave me a sweet kiss, and then I opened the door for him and he JUMPED through the door and yelled "SURPRISE!!" I was so shocked! I peeked in, though, and saw that his class had already left the cafeteria. Jayden looked at me and said "Oh no, she's gone!" I said "It's okay, let's just walk back to your class." and he said OK! So we walked to class and he kept looking at me smiling and every now and then he say "SURPRISE!" almost as if he was practicing. As we got closer to his class, he ran ahead of me and he threw the door open and JUMPED in the class and yelled "SURPRISE!!" I bust out laughing and so did his entire class!! OMG it was too freaking adorable. He went into class like such a big boy, with the biggest smile on his face. And I watched him as he took his bookbag off his back and hung it on his hook, then went to join his class. I am so proud of him. He's come so far!!

Caffeine Withdrawal!!!

2010-05-17T21:50:00.003-05:00

I can't even believe this, but I think I'm experiencing caffeine withdrawals! LOL! I honestly don't think I even drink enough coffee for that to happen, but obviously I do. I usually have 1 cup of coffee every morning. For some reason (I don't even remember why) I decided to skip it this morning. By 12 noon, I was feeling sluggish. Jayden went down for his nap and I took that quiet time to work on my contact list and work towards my goal of becoming a director with my business. I sent out a few emails, made some calls, and then I was just incredibly tired. I went to lay down for a few minutes, but of course, the minute I was dosing off guess who woke up? YEP! So I went upstairs and got in bed with him. He played along for maybe 2 minutes, but then he thought it was more fun to pry my eyelids open. I took him to the playroom, turned on the cartoons, and sprawled out on the futon hoping he'd play with his toys and wacth some cartoons for a few minutes. Well, he did play with his toys. He kept making me food from his play kitchen and bringing it to me, demanding I eat it. Then once I was done he demanded I eat more! LOL, so no nap for me. I just finished my conference call and my eyes are barely open!! I'm going to bed now and I will be drinking coffee tomorrow morning!

Sweetheart

2010-05-15T21:28:00.003-05:00

I had a session today at my house, so I was setting everything up and in runs Jayden saying "Pishure Pishure!". And to my surprise, he actually sat down and posed for some shots!! I'm so excited that he's starting to like the camera again. He's so handsome :)

Immunologist

2010-05-14T20:55:00.002-05:00

We took Jayden in to see the immunologist today. He explained to us that the immunoglobulin levels can go up and down and there's always that chance that Jayden's test results could be normal now. He tjhinks this *may* be the case with Jayden b/c his long bout of back to back illnesses just recently started in March and we just moved into a new house in January, so it could have been his immune system readjusting. Jayden never had a history of recurrent infections. He does get sick alot, but it was never as often as it has been since March. He's been on antibiotics off and on since March! So he had some more bloodwork done (6 vials of blood!!) and the Dr is going to just evaluate Jayden's entire immune system to see if there is truly a cause for concern. Also, his GI Dr wanted to repeat some blood tests. So they were vampires today. We go back in 2 weeks for results and I'm optimistic about it! We have a VERY busy weekend planned so I'm off to bed to prepare. Hope you all have a great weekend as well!

The oil spill crisis

2010-05-13T13:44:00.003-05:00

The oil spill is proving to be a very tough job for all of those involved in the efforts to contain the spill. This accident couldn't have happened at a worse for our economy. So many people and their livelihoods have been affected. It's so painful to hear and read about it everyday.

I've been thinking about going green for a LONG time now, but never pushed myself to do so, especially since "going gluten free" was my priority and very difficult to do! Ever since the news of the spill, I've been putting forth a better effort. Each time I go to the grocery store, I purchase 2 of the reusuable grocery bags. They are only .99 a bag and I have to say that I was surprised at how big they actually are. When they are folded up on the shelves, they look very small to me. I purchased 2 from Target the other day and the other items I purchased would have needed at least 3 plastic bags to carry them in. They all fit comfortably in one of my new reusables and I still had room for more. I wish I would have realized just how cost effective the bags were. I already feel great leaving those plastic bags behind at the store and I challenge everyone who reads this blog post to try the bags out. Do like I do and buy a bag or two each time you shop. :)

It's so funny how things work. About two weeks ago, I requested information for the work from home opportunity, not having any idea what it was all about. I was curious though. So I requested info and waited to be contacted. I think it took 5 days before I got a call and within that time frame I was considering changing our cleaning products to eco friendly products. The ingredients used would be better for the earth and safer for Jayden (Gluten free, and no harsh chemicals like bleach, ammonia, or phosphates). This was very important to us b/c even though Jayden is 3 yrs old, he still puts things in his mouth like a baby would. His hands STAY in his mouth. And he STAYS sick. His immune system is pretty weak, so my husband and I wanted to make a conscious effort at keeping the germs out of his mouth as much as we possibly could. We even purchased a huge thing of hand sanitizer and I soak his hands before he gets in the truck when I pick him up from school. I know that's not 100% effective, but his hands go directly in his mouth when he gets in his seat and if you could see his hands when we pick him up from school (we get him from the playground...and he's a boy!) you would understand!! LOL! Well, imagine my surprise when I find out that the work from home opportunity is partnered with a Wellness store that sells these exact items, and they have an entire Gluten Free product line! Honestly, my main reason for joining was to utilize the store for MYSELF! Starting a business from home was just an added bonus. This store helped me to convert my home faster than I thought possible. It honestly was a godsend for my family.

I browsed some other sites today to get other ideas on going green and I ran across this awesome list on EcoWomen. This information is great, especially in the wake of the Oil Spill crisis. Many people are not aware of how common it is for oil to be found in various everyday items...There are a number of surprising places where it shows up:

plastic — Did you know that most plastics are derived from petrochemicals (a.k.a. oil)? Yet another reason why we all should cut back on our plastic use. A good tip would be to purchase one bottle and refill it with concentrated mixes. Less waste and less oil used in the process.
food — Yes, that’s right. Some food additives and food colorings contain petrochemicals. A most compelling reason to ditch processed foods.
detergents — Soapless detergents used to wash clothes and dishes contain glycerin, which is a petrochemical. Switch to eco friendly brands.
candles — Most candles are made from raw petroleum. Make your romantic dinners safer and oil-free by switching to beeswax or soy.
nylon — Many nylons and other synthetic fibers also come from petrochemicals. Wear more natural fibers and, when you buy polar fleece, look for garments made from recycled materials. You’ll still be wearing plastic, but at least it was recycled.
vitamins and some medications — The active ingredient in many well-known over-the-counter meds is acetylsalicylic acids, which are made from petrochemcials. And synthetic vitamins are also made from petrochemicals.
makeup — Cosmetics containing ethanol, isopropyl alcohol, propylene glycol and benzene come from — you guessed it — petrochemicals. Search the Environmental Working Group‘s database to see how safe or hazardous your mascara, eyeshadow, and lipstick are.
personal lubricants — The most frequently used ones on the market contain glycerin, propylene glycol, and parabens, which are derived from petrochemicals. Really, why would anyone want oil, um, there? LOL!!
golf balls — Those wee dimpled orbs contain polybutadiene, which is made from you-know-what.

I know that I personally was very surprised by that list! It was definitely an eye opener and it will change the way I shop, for sure!

New Post! New Look!

2010-05-12T15:21:00.003-05:00

First of all, I know my usual readers were surprised to see the new look! Ever since I calibrated my monitor over a year ago (color correction), I've hated the colors of the old blog. Besides, the lollipop picture of Jayden was so cute, but he's grown up so much since then! So you get a fresh new banner and a new color scheme that I hope is better on your eyes like it is on mine :)

Well, this blog will be filled with updates b/c alot has gone on here since the last post. Mother's Day turned out to be a good day, despite it being a day of mourning for my family and then receiving a call that my younger brother was in a bad car accident and nearly causing a deja vu. We still cried a good bit, but I know God kept us all strong and being together helped us to keep our mind on better things. My parents did the Mother's Day BBQ in their backyard and the weather was nice. It was a beautiful day.

Monday morning, Jayden's GI dr called me. She had done bloodwork on him the week before and she was calling me with the results so I knew it couldn't be great news. She checked his levels to see if he had gluten in his system, which would then tell us that we needed to re evaluate what it was we were feeding him. I expected the test to come back showing gluten b/c sometimes I just don't feel like we are doing everything right. And not to mention that he still has very grainy poop and the seizures are not stopping. Well, much to my surprise, his levels for that were normal. I had to pat myself on the back! However, the Dr was calling me b/c she tested all of his immunoglobulin levels, IgA, IgG, IgE, and IgM, and all of them are abnormally low. So she wanted him to get in to see the immunologist asap for more bloodwork. He goes on Friday afternoon, and until then I am forcing myself not to google what all of this information may mean for Jayden. I am very thankful for the group of Drs who have been working together to help Jayden and I'm sure that he will be better soon!

Finally, I'm so excited to share that I've been blessed with a wonderful work from home opportunity! I've just started, but the opportunities ahead of me are so exciting and I am so thrilled to know that I can actually be at home with Jayden and earn a steady income at the same time! God always answers our prayers!

1step forward, 2 steps back

2010-05-04T16:31:00.003-05:00

Well, since that last MARVELOUS update, poor Jayden has contracted ANOTHER staph infection. He had just gotten over a pretty bad one in March. This one is just above the area where he had the first one. He's on antibiotics for it and it's draining, but painful for him.

So today was his followup with the GI Dr. I was looking forward to this appt b/c Jayden has been eating so well lately. Well it seemed great to me b/c he went from not eating anything, to eating 3 meals a day (although very small portions and no real variety), and lately he's been eating 2 meals a day. I could even see that he'd put on weight. So we got to the Dr this morning and he weighed 32 lbs. He was 30lbs when he got out of the hospital, so he gained 2 lbs. The Dr walked in the room and the very first thing she said was "He's lost weight and I'm very concerned about that." Jayden weighed 35lbs at his last visit 2 months ago. During that visit, the Dr told me that she was concerned about his diet and that if he lost any weight, we'd have to discuss a feeding tube. So here he is 3 lbs lighter than he was at the last appt. She sent him for blood work and we have to send in a stool sample. Depending on those tests results, he may or may not need to have another GI scope done.

We headed upstairs to get his blood drawn. Jayden usually does so well with this, but I think after being at the Dr for the staph infection and remembering that pain, he was not ready for more pain. He did cry when they drew his blood, but he definitely didn't freak out. No kicking or screaming, just an upset cry. When the nurse finished, she gave Jayden 2 spiderman stickers and a sucker. We walked out and I was opening his candy when Jayden started crying and saying "Scared, monster." and he was walking very wobbly. I figured he was being dramatic so I said "It's okay baby. It's all over, no more needles." and I continued to open his candy for him. Then he stumbled over to me and clenched on to my leg really tight and let out a loud scream and said "MONSTERS!!" Then he was hyperventilating. He'd had a seizure :( I had to sit down with him and calm him down but I couldn't sit for long b/c I was starting to have a panic attack and needed to get out of the clinic for some fresh air. Jayden was a s sack of potatoes by then. I put him in his seat and we went to grab lunch (that he wasn't even alert enough to eat) and then headed back to the clinic to meet with the dietician.

As it stands, Jayden needs 1400 calories a day. The dietician estimated that Jayden takes in approximately 650 calories or less, which is not good. I told her what all I've been doing and she said it really sounds like I'm doing all I can. She suggested some minor changes to increase his caloric intake, but really she believes that his gut is just taking a longer time to heal. She mentioned the feeding tube as well, so I do feel a bit defeated and I feel anxious b/c I have 4 weeks to get him to gain more weight and even then, that won't guarantee us that he won't still need a tube. I know it's not the worse thing in the world, but I truly expected to hear different news this morning.

We made it home and Jayden got in his bed and immediately threw up all over himself and his bed. Today has been one of those days that I just want to wake up and start all over again. And also, I went to the Dr for my back last week and the x-ray showed that something is wrong with my discs, so I'm having an MRI on Thursday. I'm doubled over in pain now, from having to carry my sack of potatoes around after his seizure today. I hope that whatever is wrong with my back is easier to fix than Jayden's Celiac and seizures are b/c he depends on me!

BTW, I just want to make sure no one is freaking out thinking that their 3 yr old is underweight and may need a feeding tube b/c s/he weighs the same or less than Jayden. He's not underweight, (although he is on the lower end of the scale in comparison to his height) but it's not a good thing for a child his age to lose weight and we already know that he has the Celiac Disease so he has intestinal damage.

THE BEST UPDATE EVER!!

2010-04-25T21:45:00.005-05:00

It's been a while since my last update, but I'm happy to say that Jayden is doing better than he's been in months!! He's like a brand new child! We did have a set back due to the addition of Keppra!! for his seizures. He was getting bad reports from school and he was out of control at home and not getting much sleep at night. He was also VERY emotional. If anything left his sight (including me, or a favorite toy) he would get frantic and fall out on the floor weeping :( I read online that children with epilepsy usually have an increase in seizure activity whenever they get sick. Jayden had strep throat and bronchitis when his multiple seizures started, so I say he was pretty sick! So I was thinking that he really didn't need the Keppra!! anymore, and since he was on the smallest dose, I wouldn't need to wean him off. I could just stop it. I called the neurologist and explained my concerns and he agreed to stop the Keppra!! and said for me to keep it handy in case the seizures start again. I think his last dose of Keppra!! was Monday morning, and so far he has been absolutely fine. Each day of school, his report said that he participated well in EVERYTHING! And one day we pulled up to pick him up and saw him taking turns on the slide with his friends. He made a mistake and pushed one little boy in an anxious attempt to get one last slide in before he went home and he got down and did the sign language for sorry and even said "Sorry Trevor"!! I was so proud of him!

Now, I have even better news!! My child EATS!!! He has been eating at least 2 and sometimes 3 meals a day! And get this, he actually ASKS me to eat!! WHO IS THIS CHILD?? This is not the same child who was on the verge of getting a feeding tube placed b/c he wouldn't eat anything other than McDonald's fries once a day! Now he's eating grilled chicken and begging for more. And I have to say a big thank you to a lady named Elizabeth Barbone. I've searched the web for Gluten free recipes, have two other GF cookbooks, and I've tried so many tricks, but all of those recipes were bland and grainy and Jayden wouldn't go near them. Well I saw on a website that this book was a must have in a gluten free kitchen. I saw that it was for baking and thought "I really need FOOD recipes, not desserts" but I still went ahead and ordered it b/c I know I'd been looking for a better cornbread recipe for Jayden. Well this book came in and there's a recipe for buttermilk pancakes. I decided to make a batch since I had all the ingredients on hand. First pancake came out and I tasted it, fully expecting a mouth full of sand...UM, boy was I wrong!! That pancake was better than any gluten filled pancake I've ever tasted. It tastes like the good old fashioned pancakes my grandma used to make for us as kids!! I ate the entire thing!

Then when the next one came out, I offered it to Jayden. I watched him from the side of my eyes and he never sat his fork down. He was happily eating the pancake! And then, when he was done with it, he sat his fork on the table, finished chewing what was in his mouth, then reached his plate out to me and said "Mommy!! MORE!!" HAPPY TEARS!!!! OMG, I gave him as many as he wanted. He stopped at the third :) I froze what was left and he's been enjoying pancakes and sausage for breakfast for a week now. Then he'll eat a sandwich for lunch (usually a late lunch since he eats so much breakfast now!) and a chicken tenderloin for dinner if he's in the mood. I know it's repetitive, but this is a miracle for a child who was living off of fries and milk! And he put on the weight that he lost when he was sick. He looks and acts so much healthier now!

He has a GI appt scheduled for the 4th and we are also meeting with a dietician and were supposed to discuss a feeding tube. I seriously doubt that we will need to discuss that tube anymore! Praise the Lord! I know he will still have set backs since he has the epilepsy, but for now we are living in the present and taking it one day at a time. Thank you to everyone who has been praying for him! And if you don't already have Elizabeth Barbone's cookbook, you need to get it!! It's a must for ANY kitchen! Even if you are not gluten free!!

Back in the hospital

2010-04-09T09:44:00.003-05:00

Jayden's seizures returned with a vengeance on Monday. Between Monday and Tuesday, we'd lost count of the seizures and by Tuesday afternoon, he started vomitting which is a serious red flag. I called Jyden's neurologist and the nurse called us back and told me that Dr. Nelson wanted us to take Jayden to Children's Hospital to be evaluated by Dr. M, a pediatric neurologist. Now, Dr. Nelson is Jayden's neurologist, but he was seeking a scond opinion on Jayden's condition and he obviously thinks highly enough of Dr. M to trust one of his sicker patients in her care. So we took Jayden to Children's ER. He had a couple of seizures during the ride there and he threw up all over the backseat. I actually had to hold him on my lap. So he was in pretty bad condition. We got to the ER and I signed him in and we waited...an waited...and waited!! He was called back for triage and when I stood him on the scale he fell. He couldn't even stand up :( The nurse took his vitals and returned us to the waiting room and we waited there for close to an hour. This was the 4th time we have had to take Jayden to the ER for seizures (the 2nd time in 4 days) and this was the only time he had to wait out in the ER waiting room, which surprised me at a hospital exclusively for children. And it didn't get any better once we met the ER dr. He asked some questions and we told him that Jayden had had countless seizures that day and that he vomitted twice on the way to the ER. We also told him that Dr. Nelson ordered us to bring Jayden there to be seen by Dr. M. The ER day told us that Dr. M was not at the hospital and "I can tell you that she is not going to come to the ER to see him b/c this is not an emergency." Say what?!?! So I asked him if he could please contact Dr. Nelson b/c he told us we needed to bring Jayden here. So the ER dr huffs out of the room and minutes later we hear him screaming back at someone on the phone and talking about Jayden and saying things like "no seizures in the ER", "does not need to be admitted", "playing with his toy"...Did I mention my mom was there with us, and that she is a nurse? So she got angry. The ER doc came back in an basically told us that Dr. M is pissed b/c Dr.Nelson shouldn't have sent Jayden to the ER b/c it isn't an emergency and she will not come to the ER to see him but she will be happy to see him if we make an appt. Then he went on to tell us why it wasn't an emergency: "Jayden followed orders, he opened his mouth when I asked him to." "He has not had any seizures in the ER." So I guess the countless seizures he had through the day were irrelevant. He also had the nerve to say, "he's playing with his spiderman toy, he's fine." Um, seriously, Jayden was dragging and barely holding on to that spiderman toy and every now and then he would attempt to make the thing move. Usually, Jayden would have Spiderman throwing invisible webs at your face or climbing up every wall in the room while he would attempt to do the same. This pissed me off b/c that's a part of the reason it took so long to find out he had Celiac Disease. Even when he feels bad, he tries to fight through it. He's a fighter! And the GI drs told me he was too "happy" to have anything wrong with him. So don't go there. My mom gave the ER dr a piece of her mind before he politely handed us discharge papers after not doing a thing for Jayden. We took him home and went to bed. The next morning he woke up still vomitting all over. This time, right in my face. Fun. I called the Dr and left a message about what happened the night before. Then we tried just letting him watch some tv and relax. Well every sound coming from the TV triggered a seizure. Then he started hallucinating. Great. Dr. Nelson called back. I explained that maybe I misunderstood the instructions from his nurse about last night. Dr. Nelson said that there was a misunderstanding but that it wasn't on my part. His intentions were for Jayden to be admitted to Children's Hospital on Tuesday and consult with Dr. M once she made rounds on Wednesday. He said that Jayden NEEDS to be in the hospital until the seizures are under control, so we came back to Tulane. We signed in at the ER and barely sat down for 2 minutes before he was taken to a bed. A CT scan was ordered immdiately b/c seizures and vomitting is not the perfect combination. Thankfully the CT scan came back normal, and he was admitted for further testing and observation.

Today he is doing well. He hasn't had any more seizures since being admitted and starting Keppra!!, so I'm pretty sure that when they discharge him he will have to continue that awesome drug. It's awesome b/c it stops his seizures, but it's also awesome (sarcasm!!) b/c it makes him incredibly emotional and angry so I suspect he will have a rough time in school next week if he's able to go back by then. But no seizures was the goal and I think we've reached that. He's been in great spirits while here. Right now he is riding the halls with his daddy, on a tricycle and he just brought me some food that he cooked for me in the playroom. I'm waiting around in the room for the neurologist to discuss a plan of action and hopefully get discharged. Thanks to everyone who has been praying for Jayden. God is definitely healing him!

Seizures and hospitals

2010-04-05T12:20:00.005-05:00

My poor little guy has had a ROUGH month, to say the least. Thursday he had a followup appt with his neurologist. He wanted to knwo how Jayden had been doing on the new medication combo. In my opinion, he had been doing well b/c instead of seizures every 2 weeks, he actually went 6 weeks without one and when he had one it was pretty mild. But then he had a really bad one at school, so that was a concern for the Dr. He also believes Jayden may be having seizures in his sleep b/c Jayden sleeps ALOT (4-5 hour naps and 12 hours at night) and if we wake him up out of his sleep he's very lethargic, cranky, and disoriented. So his night time seizure meds were increased. The ironic thing is that when the nurse took his vitals Jayden's temp was 101. He wasn't as active as usual, but he wasn't acting really sick either. But when we got home it was a different story. He was grabbing his neck and crying all night about the pain. I looked in his throat and saw small white spots and his breath had a bad smell. I knew he had strep. Thursday night his temp stayed high, even with Motrin. Of course the Drs offices were closed on Good Friday, so Thursday night I called the on call nurse. The nurse was pretty rude, telling me that these symptoms just set on so I need to give it time to let his body work, to take his clothes off, and that a high fever won't hurt him. That's where I had to cut her off. I told her he has a seizure disorder and a high fever could definitely hurt him. So then she says "Well all offices are already closed and they will be closed tomorrow. He can't have his throat swabbed over the phone and the Dr will not call in an antibiotic without seeing him first." Ok, wow. She was rude. So I simply asked her if there was an Urgent Care center in the area and she told me no. So we toughed it out. Tylenol/Motirn around the clock. He slept in bed with us b/c the fever kept shooting up so high and we worried about seizures. Friday morning I gave him the fever reducers and by the afternoon. after a nap, he seemed better. But by Friday night he was shivering yet burning up. I gave him more meds and we went to bed. At 2 am, my husband woke me up saying Jayden was burning up. I took his temp and it was 104. We took the blankets off of him, as much as he protested b/c he was cold, and just watched him. At 8 am I called the Drs office and got him an appt to go in. He most certainly had strep throat and bronchitis. The Dr gave him a penicillin injection and made us stay for 20 minutes to make sure there was no reaction. He told us that the shot would knock the infection out really fast so Jayden should be like a different child that afternoon. Good news! We were ready for him to feel better.

But it didn't quite work out that way...We got home and put Jayden in our bed. He asked to eat and I was so excited b/c he hadn't eaten a thing AT ALL since Wednesday night. I warmed him a hot dog and took it to him in the bed. I tried to feed it to him and he said no and put his head back on the pillow. I sat the bowl aside and he started screaming. A very high pitched scream. I tried to pull him up into my arms but his body was so tensed and being pushed into the bed, I couldn't get him up. My husband pulled Jayden's thumb out of his mouth b/c he was biting down. I finally was able to get him in my arms, and it felt like forever, and he continue to tense up and seize for about 45 seconds. Then he relaxed and closed his eyes, the typical postictal state. But just as soon as he relaxed, he screamed again. Another seizure. Much shorter than the first though. And this time he immediately passed out, which is also a typical postictal state as long as he's breathing, and he was. I held on to him for a while and talked to my mom. I told her I wasn't worried, even though this was the scariest one since the Thanksgiving Day seizure b/c he nearly bit his thumb off and I felt helpless. But he was asleep now and Jayden always feels better after a nap when he has a seizure. So he napped, and we napped. I woke up and did some house work and Jayden stayed asleep. Close to 5 and 1/2 hours. I woke him up to see how he was feeling and it was odd that he was still in the postictal state. This is never the norm for Jayden. Usually after a nap, it's as if nothing happened, but not this time. I didn't panic though b/c I also knew that he hadn't been feeling well so he must have been exhausted. I let him stay in our bed and turned on the cartoons. His temp was back to normal, 98.4. I called my mom and I said "I'M BORED!!! Come over and watch movies!" So we were trying to figure out what movies we would watch when Jayden screamed again. It was quick though. He screamed, tensed up, and then turned around and said "MOMMY HELP!!" I held him and he immediately fell asleep again. My mom told me to bring him to the hospital b/c by this time he'd had 3 seizures and was not recovering from them. I was getting dressed and he had another one. He remained disoriented on the ride to the hospital. We got there and they took him straight back where he just layed on the cot. He was also still experiencing dizzy spells and wouldn't allow anyone to move him without him screaming. The ER Dr came in and as she was examining him he had another seizure. She left the room to contact Jayden's neurologist. They gave him a huge dose of Keppra!!, the drug that we despise b/c of how emotional and hyper it makes Jayden, but I really didn't mind as long as it would help him. Then the ER Dr came back in and said that Jayden would need to be admitted. At this point, the seizures were no longer the concern b/c they were so short. The concern was the fact that he could not come out of the postictal state. We got to his room and they had to bring in oxygen tanks and other scary stuff, just in case. Jayden slept peacefully all night, with no seizures. He woke up the next morning, and was very quiet so I was worried, but soon enough he said "Juice" "On" (for the TV) and "GiGi" (his favorite person!). His vitals remained satisfactoryand the Drs concluded that Jayden was having so many seizures b/c his body was working really hard for the past 3 days to fight off the infection and once the penicillan kicked in, his body reacted to not having to fight so hard so suddenly. They didn't think it was a reaction to the penicillin, but they still wanted to watch him at least until lunchtime and to give him another dose of Keppra!!. So we all hung out in the room. My mom brought him an Easter basket and pretty soon Jayden was up playing around and making us laugh. His gait was still very unstable, but the Dr thinks it was from the Keppra!! and not b/c of the seizures, which was a relief b/c with the last seizure he had, he couldn't walk at all for about 4 hours. So we were staring at the clock, anxious to get discharged and then Jayden screams and had another seizure. Went straight to sleep. We had to report this to the nurse and of course we didn't get discharged at lunchtime. The good thing, though, is that after that nap, Jayden recovered and was bright and alert. So they monitored him for another 3 hours or so and told us that they would discharge him as long as we felt comfortable and knew when to bring him back in to the hospital. The neurologist had them to write an increase on his current seizure medications and I can't wait to see him next week so I can hug him for not sending Jayden home on that Keppra!! drug that we hate so much! LOL!

This morning, Jayden does have a fever of 100.8, but I gave him some Tylenol and he's lying down watching television. I'm hoping that he is on the road to recovery now b/c this has been a whirlwind of a weekend for us!

Lunchtime

2010-03-29T18:32:00.003-05:00

Anyone who knows Jayden, knows that he is not a fan of eating. But what most people don't know is just how afraid of food he really is. Sitting at a table with a plate of food in front of him is the worse form of punishment for Jayden. This fear comes from the constant stomach pains he had up until he was diagnosed with Celiac Disease at 2.5 yrs old. Can you imagine being in pain for that long? And everything you ate made it hurt worse? So his fear is definitely understandable. Everyday is a struggle to get Jayden to eat and there has NEVER been a day that he has eaten a full 3 meals. In fact, getting him to eat 2 meals in one day is rare. So when he does eat a meal, we are very thankful!

It always begins with him attempting to ignore the plate in front of him. Don't want to eat? Then just put on a show for mommy and daddy!!

Eventually, he realizes that he needs to at least try the food in order to get down from his seat. Although he loves his gluten free bread, anything that he eats always begins with this same look of fear on his face, and it breaks my heart :(

But usually he'll realize that he likes it and it didn't hurt his stomach the last time he ate it so he''ll take a few more bites. He never eats much at all though, but something is always better than nothing.

These pictures were taken last week. Today wasn't a good day for eating. He refused breakfast (gagged on it even) although it was his favorite, suasage with maple syrup. He also refused lunch and he hardly ever eats dinner. And this happens very often. It's funny the things we take for granted in life. A mother never realizes just how important something as simple as eating is until your child downright refuses to eat.

My baby

2010-03-22T15:27:00.002-05:00

He's finally feeling better. Still not eating at all, but his referral has already been sent in to the insurance company for a dietician and we just have to wait on the approval. Or the denial. The representative I spoke with believes that it will be covered b/c of his celiac diagnosis, but she couldn't be sure. So we just wait and see. If we cannot get him eating soon, he will need a feeding tube. I have no idea how he's not starving, but he drinks his milk so that must tie him over. That and the cupcake he had yesterday at his cousin's birthday party! Yep! My big boy was able to enjoy a cupcake at a birthday party thanks to his wonderful Aunt who baked a batch of gluten free cupcakes especially for him. Oh he was so excited. I gave him his cupcake and he happily walked into the living room and sat indian style with the rest of the kids and enjoyed hos treat. It brought tears to my eyes. I think it helped that he saw that his cupcake came from the same place that the others came from, and not out of his bag. I need to figure out a plan to get my baby a cupcake at every party he goes to from now on. It may mean baking it at home, smuggling it into the truck, and then sneaking it onto the birthday child's cake table when Jayden isn't looking. And I may have to call ahead to ask about the cake colors b/c I'm pretty sure that's important too ;) Anything to see him smile the way he did yesterday...anything for my baby :

Prayers for Jayden

2010-03-15T14:48:00.002-05:00

March has been a tough month for my little man. First, a bout of synovitis, followed by a pretty bad staph infection. Then Friday he had a really bad seizure at school. Saturday he started to run a fever and it hasn't broken much since then, even with Motrin. He's extremely congested and not eating at all, but he's drinking a TON which is very encouraging. I've tried pushing pediasure but he gagged on it and threw it all up. He's just not feeling well at all. I'm waiting for the Dr to call back, both the GI and the general pedi, to see what the next step has to be. He's been in the Drs office for sick visits 3 times in the past 2 weeks.

There is power in prayer

2010-02-18T19:21:00.002-06:00

And if you don't believe me, you need to go here.

The mom gives a gut wrenching explanation of the accident here. (Scroll down to entry from Feb 1)

God is so good!!

Still here!!

2010-02-09T11:55:00.002-06:00

As you know, the city is in full celebration mode! History has been made. The Saints are the Superbowl Champs, they went ALL THE WAY! The way the fans have been supporting their team is absolutely amazing to me. The city has come together to celebrate and the feeling is just hard to explain. Tonight is a parade in honor of the Saints and the Chief of police says that they are expecting a turn out of about 60,000 people OR MORE!!! WOW! It's actually quite cold and windy outside, but I really doubt if it will have too much of an effect on the turnout tonight. GEAUX SAINTS!

I do have some news and updates on Jayden that I will post soon when I have a moment...

Moving :)

2010-01-15T09:28:00.007-06:00

FINALLY!! We are moving back to Louisiana! Slidell, to be exact...only 15 minutes away from my parents! I can't believe it's finally happening. However, it was certainly without complications...

Last week (Wednesday, I believe), we had a young couple to come by and view the house. The wife walked through and the husband hung out in the living room chatting with my husband, looking at things when his wife requested. She told me she loved the house and then said "We want it! How soon would it be ready to move in?" So we told her that we'd need to get in touch with the movers and let her know how soon they can come out to get our things and from there we could give her a move in date. I took some information from her and her husband and told her that we would be in touch with them once we had a firm date and then we would type up the lease and collect her deposit.

So Thursday morning, my husband called and left a message for the moving company and I did a quick little background search on the couple. I did find some info that wasn't shared with us by the couple, although it wasn't really anything I would consider incriminating. Just that they run a large dog breeding business and had a few complaints about selling sick dogs. I spoke to my husband about it and he said that as long as they kept the dog breeding business on their own property (they own land) then he was fine with it. But I wanted to talk to the couple to see if they had another source of income should the dog breeding fail. I gave her a call, and she seemed to be so understanding and willing to provide whatever recourse I needed, including bank statements, and even offered to pay two months in advance. I spoke to my parents and to my husband and we all decided it would be okay. Benefit of doubt. I sent her the lease Thursday night and told her to read over it and let me know if there were any questions. If not, then sign it and send it to us with the security deposit. They currently live 90 minutes away, so she called me and asked me if she could just deliver the signed lease and the deposit on Monday morning. I said ok. She sent two more emails asking about utility services and expressing her excitement to move in the house. We got the call from the movers that they could be at our house on Monday to pack up. So everything seemed to be working out, although we made that decision without having the security deposit in hand. Mistake #1.

Saturday, we drove to Slidell to bring our deep freezer and our dogs to spend the week with my parents. Then we went searching for rental properties for ourselves. We looked all afternoon Saturday and didn't find anything and decided that we'd just have to stay with my parents until we find something. I went back on craigslist Saturday night and came across the most beautiful house. It was 7:55pm, and normally I do not call anyone after 8pm, but something told me to call about it or it would be gone. I called the realtor and asked her if the home was still available. She said "Actually, someone will be turning in an application on it some time tomorrow, I believe." So I said "Would it be rude if we met you first thing in the morning and turned in an application if we like the house?" She told me she'd need to call her husband (they're partners). She called me back and said that they made no promises as of yet, on the lease, so if we could meet her in the morning we could view the home and turn in an application. So we met her at 10 am, walked in the house and fell in love!! My husband actually said, "Ask her if it'll go up for sale in the future." That's how much we love it. The neighborhood is PERFECT. Community pool, tennis court, and private playground. And a bike trail with NO HILLS! My poor knees can't do hills ;) It's just perfect. We went back to the office to fill out the application and next thing you know, we were giving our deposit and were being handed keys to the house! That's when I started feeling anxious. We just put a deposit on a house, but never got the security deposit on our own home. I brushed the feelings aside though, thinking I was just being paranoid.

Sunday, we get home and put things aside that we don't want on the moving truck. We got to bed after midnight and woke up at 6am to get ready for the movers. I picked up my phone and saw that I had an email from the lady who was supposed to be dropping off our security deposit and the lease...

"Hi,

I want to let you know that we actually decided to move to Florida instead of Jackson. We originally wanted to move there but could not find a house that we wanted and one that we inquired about before has come available again. I apologize for wasting your time and we never had bad intentions but, we have found our dream home in Florida and we will be relocating there.

Thanks again!"

{insert jaw drop here} I looked at my husband and said "OH MY GOD!!! They are not moving in!!" He said, "WHAT??" I gave him a run down of the email and said this is awful b/c the movers are taking our stuff!! This is the worse case scenario! Then I said, "No. I'm not gonna freak out. The movers are on the way and we put a deposit on another place. There is no turning back. God wouldn't put us in this situation." I replied to the email...

"Wow. The movers are taking our stuff today and we put a deposit on a place. I guess we really shouldn't have made a move without your deposit but I didnt think you guys would back out on us."

It's true. It was our mistake. It was foolish of us to trust them. It was wrong of us to assume that everyone is honest and have good intentions. So, we put ourself in the situation, and we had to take action to get out of it. I put our ad back up on craiglist and immediately began getting phone calls. We had 3 showings on Monday. 5 on Tuesday. A family that viewed the house Monday night called back on Tuesday and came by to sign the lease and leave the deposit. AND as she was signing the lease, both she and my husband realized that they knew each other. She works for the Army recruiting office and had to have her fingerprints done at the MEPS where Mike worked. So like they say, everything will happen the way God intended it to happen, as long as you allow Him to work in your life. Truly a blessing! Wednesday, as I was dropping things off at the house in Slidell and purchasing paint, I got an email (and a phone call) from the lady who backed out on us. Mind you, I hadn't gotten a response or even an apology, since the email exchange on Monday morning...

"Hi Jenia, Have you rented your home yet? If not please let us know as we are still interested. We have decided Florida is not the right move for us right now... Maybe in a year but, it is not a good move for us now as we do want to sell our house eventually... Im sorry for putting you in that spot before but, we have been trying to work a few last minute details and were originally thinking of moving to Florida but, now have decided not so much. So, just let us know and we can be there tomorrow to finish up everything."

I told her that a lease was signed soon after they decided they didn't want the house. I just cannot believe that she would even consider calling me after what she ATTEMPTED to put us through. But you cannot knock down a family with faith, no matter how hard you try.

Today, Jayden and I are doing some last minute errands and will be meeting with our tenants this afternoon to drop off the keys. Then we will say GOODBYE JACKSON, MS!!!! And, as we look back at our week, we realize that it was not only a lesson learned, but it was also God moving in our lives. We planned to stay put in Jackson and not make a move until we had someone in the house, but there, in Slidell, sat the perfect house for us and had we not made that move when we did, we wouldn't have the house. God does work in mysterious ways :)

New Year, New Blog

2010-01-03T21:17:00.002-06:00

Well, it's not exactly new, but I will be doing most of my blogging, now, from my photoblog. It's an attempt to draw more traffic to my photoblog and to encourage me to take and share more pictures.I'm trying the photo a day thing, but we all know I won't last long with that. But I will do my best. I will still post here on occasion, when I have something that I just would rather not share on my phototblog, but for the most part, you can follow me here.

Happy 2010 everyone!!

2009 was a great year...

2009-12-29T19:05:00.012-06:00

Despite all of the issues thrown our way. These pictures prove that through it all, Jayden is still a happy little boy and a blessing in our lives!

So here's to 2010...may it be a year filled with health and growth for our family! Have a Blessed New Year!

13 days...

2009-12-28T19:55:00.003-06:00

I may as well use my blog as a journal as well for the seizures. 13 days after adding an additional medication for the seizures, he had another one tonight. It was very short and he just seemed to hallucinate for a while, freaking out saying he saw a monster, and then he got VERY dizzy and wobbled and fell all over the floor. My husband picked him up and his eyes couldn't focus, they just kept rolling. Now he's exhausted and cannot sit up b/c the room must still be spinning to him. I'm calling the Dr tomorrow morning to report the seizure. A part of me is PRAYING that they do not increase the dosage on the Keppra b/c that medication has caused his behavior to spiral OUT OF CONTROL, but then another part of me just wants them to do whatever they can to stop these seizures.

Betty Crocker ROCKS!!

2009-12-23T09:44:00.004-06:00

Yesterday evening, we made a stop at Walmart for some last minute stocking stuffers. While there, I stopped in the baking aisle to get a box of cake mix to make a recipe that my friend, Lyndsay, posted on her FB page. Fudge Crinkles...yummy! I decided I'd make these cookies for Santa (wink, wink). So as I am scanning the shelves for the correct cake mix, I see something that made me gasp!! Betty Crocker GLUTEN FREE brownie mix!!! Yes I get very excited when I find something that my baby loves that is now GF, and I especially get excited when it's an regular brand and not a GF specific brand. The GF specific brands usually cost $5+ a box. Betty Crocker's Brownie mix was $3.50 at Walmart (still a bit more than the regular mix, but certainly not as bad as GF specific brands). There was also the cake mix. I didn't see the cookie mix at Walmart, so grabbed the brownie mix and threw it in the basket. My husband wanted me to throw a few in the basket, but I want to be sure it's any good first. Not that I don't have faith in Betty, but most pre packaged GF baking mixes are VERY grainy. So grainy that Jayden won't bother eating them. It's almost like eating warm sand. Brownies shouldn't be bad though b/c cocoa powder is safe and it helps to keep the mixture moist. We will see. When I bake Santa's cookies (wink, wink) we'll also have him some GF brownies just in case he wants to try those. I'll let you know what Santa thinks (wink, wink)!! Also, I don't think I mentioned it here, but I baked a GF angel's food cake from scratch for Jayden's birthday party and it was DELICIOUS! Fluffy and moist and not so grainy. All of the kids loved it. I'll share that recipe soon, but for now, I need to get back to my elf duties...assembling toys for my spoiled little boy!!

Another one...

2009-12-15T12:53:00.004-06:00

Jayden had another seizure today. It was very short, but he was still just as lethargic and non responsive as he was when he had the seizure on Thanksgiving day. The ER doctors told us that it's okay for him to sleep after the seizures b/c they wear him out, so we let him go to sleep and I am eyeing him like a hawk. Surprisingly, I didn't freak out when he had the seizure like I thought I would have. I just felt sorry for him b/c he was so uncomfortable and scared. I am worried, though, b/c I want to know why he keeps having them. I want to know what's wrong with him. I want the Dr to fix it. I left a message for the nurse and I'm waiting for a call back. Please pray for my baby.

********************************************************************
Update: The Dr just called us back. Jayden's MRI is normal (THANK YOU LORD!!), now I can stop inspecting his head for lumps and knots that don't belong there! However, his EEG is still abnormal, but that is no surprise b/c we are seeing the seizures happen. So he may be epileptic. The Dr is starting him on the pediatric dose of Keppra, in addition to his Trileptal. The Dr warned us that Keppra is known to cause behavior problems in small children. This could be a problem b/c Jayden is currently in behavior therapy. But the seizures have to get undder control, so we will do what we need to do. Hopefully once the seizures are controlled, his behavior will get better. I have noticed a difference since he started the Trileptal, so hopefully the Keppra won't make much of a difference. He has to go back in to see the Dr in Jan, so I will keep you posted. Please keep praying for us!

A surprise congratulations!

2009-12-14T12:58:00.003-06:00

I'd been planning a surprise party for my husband, since July, to celebrate his retirement from the Air Force. I started the planning so early b/c I know that all of his friends and family live hours away. His parents and his sister and brother live about 7 hours away, but his cousins and grandma (whom he hadn't seen in over 20 yrs) live in New Jersey, so they are a plane trip away and I wanted to give them time to plan ahead. I found out from my sister in law that they got a plane ticket for Mike's grandma and that she would be coming to the party. I was SO excited!!! Mike had his official retirement ceremony in November. He basically begged his parents to come and I felt so sad for him. I wanted to just tell him "Look. I have a party planned for you in December and they are coming down then." But I didn't, and I'm so glad I didn't! My parents did drive down to surprise him at the ceremony though. I continued to keep his party a secret from him. As the party drew near, I was just so excited! Then Saturday came...

RAIN, RAIN, RAIN....all day long. Early that morning I get a call from my mother in law. They are not coming. I was so disappointed. That was the main thing I was looking forward to for Mike. I couldn't shake that disappointment. Then things just started falling apart. The rain wouldn't stop. My mom had to attend a funeral and was running late to get back to the house to help set up. My dad wasn't feeling well. I was doing everything by myself and was so overwhelmed. The rain continued and just got worse and worse. Then, city wide flooding. Basically the flood of 09. Of all days!!!!! I called the DJ and asked her to come an hour later. Then the text messages started coming in. People couldn't make it due to the weather. I just kept saying the serenenity prayer over and over again b/c this was out of my hands. All of my planning and hard work seemed to be washed away in this stupid flood. But the party was going to go on. We were in a hotel in Algiers, so we drove back to the hotel to get dressed and there was horrible street flooding. By 8:30, the rain had stopped and when we left the hotel room the water was receding. Thank God. I sent a text to a few people saying that the party was still on and that we would just start late. Then on the ride to the party, I notice that my camera bag is empty!!!! No camera. Oh my God the devil was so busy :( Then Jayden is in the backseat saying "Wayne where are you?!?!" He gets frantic over that b/c Wayne is no where to be found. We left it in the hotel room...Turning around was not an option b/c of the street flooding and we couldn't be sure what roads were blocked or not. BIG SIGH and I was fighting back tears. My cousin called at that point, to say she wasn't coming. I just said "okay, it's fine b/c I don't think anyone is going o make it. But what can I do??" My cousin heard the defeat in my voice and she got dressed and came to the party. She told me that by the time she got dressed and on the road the water went down.

We got to the house and my mom had the house decorated so nicely! She screamed out SURPRISE about 4 or 5 times but Mike never caught on. My mom had to actually say "Mike, surprise, this is YOUR party!!" and we showed him his cake. Then he caught on! It was so funny. I was disappointed at first b/c I had high expectations for this party. I'm still disappointed in some of my family who never seem to come out to anything, but in the end I know that everyone who knew how important this was for us was there and celebrated with us. By the time the party the got started the rain was gone and so was the water. A few more people came by and said all of the roads were clear, but fog was setting in really thick. We ended up having a really nice time with those that did show up. It turned into a very fun night despite all of the set backs. I'm so proud of my husband!

Pictures were taken, but I didn't have my camera so I have to wait until I get the pictures from my sister and my brother. I'll share them when I get them :)

10 on Tuesday

2009-12-08T15:17:00.002-06:00

1. I got the results back from my MRI last week which showed severe sinus inflammation that the Dr believes could be chronic since all of my migraines seem to start off as sinus headaches. He is referring me to an ENT to discuss sinus surgery. Until then, I am taking Levaquin and Nasacort.
2. This morning I went from no headache to full blown migrain in less than 5 minutes. Since it was time for me to take my Levaquin and Nasacort, I just added 2 excedrin migraine pills to the mix and prepared myself to spend the rest of the day in bed for a migraine I couldn't get rid of. Well, guess what?!?! NO MIGRAINE!!! That's a record people. I've never had a non prescription medication take a migraine away, although my mom is thinking that the Nasacort helped :)
3. My boy is talking people! I mean really talking. And I'm loving it! He asks himself questions and answers them, he makes his toy soldiers talk to each other, and he's putting so many 3 word phrases together. To all those people who told me that I would be wishing he wouldn't learn to talk b/c he would never be quiet...YOU WERE WRONG!! I love to hear him use that sweet voice.
4. I am feeling like I need at least a month vacation from my photography business. I just feel burnt out. I imagine lots of potographers feel this way aroun this busy time of year. But honestly, I just may take that vacation!
5. Did you know I opened an etsy store?? I sure did! Check it out www.beanies4babies.etsy.com I have a serious addiction to knitted baby hats so I'm so glad I can use my creativity to create whatever it is I want :)
6. I found out that we have 4, yes FOUR, doctors who live in our cul de sac! And get this, one of them is a neurologist. It's comforting to know in case of an emergency.
7. Jayden has been doing well, but he's still having headaches. We are hoping to get results from his MRI and EEG this week. Praying for good news!!
8. I'm getting bored with my monthly menu lately. It always seems to be the same thing over and over again. Can anyone share their favorite recipes or favorite sites for recipes?
9. I finally retired my blackberry and will be switching to an iphone. I think it will be delivered today and I'm very excited about all of the apps I can get. I'm hoping I can find a good gluten free app b/c I'm always so nervous about where to find food for Jayden when we travel.
10. BIG, FUN, EXCITING weekend coming up for us!!!!!