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.