Friday, July 24, 2009

long winded update

It's been busy here lately, very busy, Nicholas had his eye surgery and everything went smoothly =) and by his surgeon he is the only child she's ever had that didn't end up with some kind of infection post-op. His eyes look great! She was telling us he would most likely need a second surgery because his eyes were starting to pull upwards and this surgery would not fix it, but guess what? His eyes since surgery have not pulled upwards at all so by the looks of things he will NOT need a second surgery *yippee*

Now for the downside (why does there always seem to be one?) Nicky had his feeding study, he didn't aspirate during it BUT came close and is pooling a lot of fluid in the back of his throat, even though he didn't aspirate during it she figures that when he's ill he does since he has extra problems with being "noisy" when he's sick. Now if that wasn't enough his test results are all in, he is slightly Vit K deficient (Vit K is needed for some clotting factors) which does explain the bruising he was getting. He also has that thalassemia trait, which confirms the diagnosis of thalassemia in myself in a round about way, my neurologist brought up the possibility when I was pregnant with Matthew because of my constant low hemoglobin for no known reason (doctors never checked for thalassemia because it doesn't fit with my ethnic background). Nicholas has the "cis" type, meaning he got both genes on one chromosome, since DH has no thalassemia genes it means they had to of come from me and because my hemoglobin is very low they put two and two together without having to stick me any more times to come up with me having it (I have three defective genes, one from one parent and two from the other). On top of that, yes there is more, he is also showing a higher then normal but not screaming "somethings wrong" level of fetal hemoglobin, more then likely HPFH but we wont know for sure until more tests are done later. His doctor just wants to watch it for now, he says it's higher then expected and higher then he's seen before but not high enough to warrant more tests just yet.

We have also moved, we are in the PMQ's now, it is so nice to actually have room! We got a 3bdrm townhouse and it is CHEAP, we are paying less here then we were for a small 2bdrm apartment! The kids have loads of room to run and pay and there is a playground within spitting distance of our unit. Mike's CT is going through so they ended up scrapping tour on him, they gave him a choice "go on tour or take the transfer" while tour pay is awesome but in the long run the CT is going to give us more money. Mike also finally gets his wish and he will soon be Air Force =) I am so happy and proud of him!

Both the other boys are doing great, Joey did have an issue with his A1C thanks to his old school but it is coming down nicely (2.4% drop in a month!), he also finally has his IPRC and IEP and is identified at the board level which means no more yearly testing that goes no where. He will be starting a special program next year and it doesn't matter where we go every school has to honor this because of him being identified at the top level. Hopefully this will mean we see huge improvements at school not only in his work but overall, especially in his stress level, we are hoping he will start to really enjoy going to school again and not be so frustrated with it all.

=) while I will update again when I have time. Nicky has a few more appointments to go, he has the sleep study and he's been referred to the breathing clinic so hopefully his treatment will all start to come together now and he'll be a lot healthier from it.

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