Nathan's latest dx

Well, Nathan has had lots of appts lately transitioning from Early Intervention to the Intermediate Unit. In order to do this, he has to be evaluated in all three areas, PT, OT and education. The OT and education were done at one appt, but the PT is not scheduled until August 18th. Plus I had him evaluated at Theraplay so that he can resume physical therapy there. There will most likely be a several week lapse in services bc EI cannot provide any service from the minute he turns 3. Theraplay recommended services twice weekly so we are starting this week.

Nathan had a dermatology follow up on Monday. Dr. Yan examined his hair and said he has Pili Torti otherwise known as "twisted hairs" It causes the hair to be brittle and is the reason he has the bald spot in the back of his head. It is not really specific to his disorder. He recommended that we use conditioner for his hair and check his intake of Biotin, but otherwise there is not really much that can be done. I read what little information is online and people said that the conditioner does not really help. One site said that the condition sometimes improves after puberty.

He also had a follow up with endocronology on Wednesday, but we had to cancel because I had a migraine. We rescheduled for wednesday of this week.

Nathan is really backing off the Pediasure. All of his drs have been surprised that he has been willing to drink it for so long, so it was only a matter of time. He wants water and whatever everyone else is having. For a while we lied and told him we put water in his cup for him, but I'm starting to feel bad for lying to him. He wants to drink out of a big kid cup now. He is eating more table food, but we have to keep in mind that he is losing alot of calories without the pediasure. Basically the weight thing feels like a losing battle. We try all kinds of crazy things, putting all the food on the table and waiting for him to ask for it, forcing Libby to not say the words "done" and "dessert" at the table. It is exhausting and feels like it is all fruitless. It seems like if he was capable of gaining weight he would have done so by now with all the different things we have tried.

Anyway, sorry for all the negativity. Sometimes I just can't believe I have a special needs child. I look at little boys everywhere from grade school to adolescent age and I and feel sad that Nathan is not going to have the life of a typical kid. He will always be the kid that looks different. I am happy that he shows normal cognitive development, but in a way it makes it more difficult bc he will know what he is missing. I am sad every minute of every day about that and I don't know how to get past it. Mark says it doesn't bother him and I don't know how he does it.

Thanks for reading if you still are listening to me vent. I should be happy today, bc as most of you heard (I'm a blabber mouth) I am pregnant! We are pregnant without any infertility treatment and so far everything looks good, nice heartbeat, two arms two legs and all that good stuff. We had a consult with the genecist because of my advanced maternal age. All we have been concerned about is what Nathan has, but it turns out they scare you with all kinds of other lovely possibilities. We are hoping for a healthy, fat (i know be careful what you wish for) full term baby boy or girl due February 4th 2009. Nathan will be a big brother! We are hoping that it will be a big step in helping us heal from the trauma of the last 3 years. The anxiety and sadness of Nathan's birth and development have been so stressful. Of course there are no promises in life as we know. We thought we had fullfilled our quota with infertility but Nathan's genetic issues have disproven that theory.

Once again, thanks for letting me vent. It feels good to get all this stuff out!

about me

well, I am having a bad Nathan day today. I try to be so positive and grateful for all that I have but today I am struggling. I downloaded some pictures of Nathan with his sister and our friends kids and he just looks so different. Then I went off on a tangent thinking again that he has Hadju Cheney. I just feel like he keeps looking more and more different and we have no idea how different he will eventually look. I don't know why some days are good and then one of these types of days comes along and bam. It's like its all new to me. I look at the shape of his head and his profile and he really does look different, but why can't I accept this still. Maybe just because we don't know how it will progress. I just am starting to worry about when he goes to school and peers begin to notice that he looks different. Who knows, maybe some of your kids already asked why he looks different and you just haven't told me. Everytime I get down about this and talk to Mark about it he says "I don't think he looks that different.

Nathan's First Week at UCP

Well, Nathan had a great first week of United Cerebral Palsey's "Best Friend's" school. He cried the first day when I left, but today (thursday) he was pretty good. On Tuesday, he did not sleep there because he told them that he doesn't take naps, but we cleared that up and today he slept. The class is mixed with different ages for the summer so their are several four year olds in his class. I have not seen another special needs child in his classroom so he may be the only one for the summer. The teachers are very nice and of course love him already. They do call him Nate which I am not ready for yet. I have corrected them, but feel badly about doing so. He continues to be a ladies man and there are three four year old girls, Sally, Katie and Sophia, who "take care of him" in their words. They give me a full report when I pick him up and give him lots of hugs. The room is really nice and big so he has alot of room to move around, which is something he needs to get up and down.

We had a rough weekend last weekend because Nathan began gagging and sometimes throwing up at mealtimes and eventually refused to eat anything at meals. We were so frustrated because it felt like a new problem again. Finally on Monday, my friend Megan suggested that it sounded like reflux and it all came together. We took Nathan off his Prevacid two weeks ago after his GI appt. We had no proof that he had reflux because he had been on it since he was an infant just presuming that he may have acid reflux. Well it turns out he must because we put him back on and he is doing much much better. He has not gained weight with the Benecalorie probably because of the reflux issues. Hopefully with him back on the medication and on the Benecalorie he will start putting on some weight.

So Early Intervention ends next month when Nathan turns 3. We are going through the transition process for the Intermediate Unit. Even if he does qualify for services, I am planning to have him get some additional physical therapy at Theraplay again. They now take his insurance so we would no longer have the $40 copay. Plus with Libby in school full-time I have plenty of time to take him. I think with the change in services and additional help, we can make some progress with him physically. He is still unable to run, jump and walk up or down single steps (curbs etc.) like a 18-24 month old can do.

well that is all for now.