Still here!!!

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...

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

Pre-K!!

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

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!!!

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

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

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!!

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...

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

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...

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

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

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...

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

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.