Friday, May 16, 2008

Sleep.... I need sleep.....

Seriously. Last night was just.... argh! He was up so often I didn't get any sleep after 3am (the first poop incident). Fortunately we got a lot better at getting it all in the toilet though! Between 5:30-7ish he had a random weird fever of 102-103ish. By 7 he was up for the day. So I took him downstairs and he watched a movie. He had another incident at 7:30, but after that he perked up and started asking for food. He ate like a horse! He had about a dozen of those little pancakes, a french toast waffle, a bunch of cheez-its and some water. Then at 11 he had a banana too. His fever went away and he said he was feeling better. He had a dr appointment (genetics) scheduled for 11:30. Fortunately Jason was able to stay home this morning so he took Owen downstairs while I slept from 9:40-10:45. Woo-hoo! A whole hour! When I got up, he was feeling fine, hadn't pooped since 7:30 and was eating and drinking. So I risked it and brought him to his appointment.

His appointment went well. The chromosome testing we had done all came back normal. WOO-HOO!! She believes at this time it's likely he has Neurofibromatosis. She, again, offered us the blood tests (there's 2) to see what it says. But, again, I turned it down. The tests (both together) catch about 90% of NF cases. Which leaves that other 10%. So, basically, even if it comes back negative she's going to tell us to continue doing exactly what we're doing (yearly eye exams to look for Lisch nodules (freckles in the eye), keep an eye out for freckles in the groin or armpits, tumors and scoliosis) since she can't rule out a false negative. While it would be nice to know, one way or another, it's not worth sticking him, in my mind, for those kinds of odds. She did say, however, that he fits the model for it and that all of his "issues" can be explained by NF (that there isn't anything going on with him that isn't consistant with NF). So for now it's a waiting game. If the eye doctor finds the Lisch nodules at any time, he'll get the NF diagnosis. If we find freckles growing in his armpits or groin, he'll get the NF diagnosis. Those are the two most likely things to happen. Of course, if tumors start growing he'll get the diagnosis and if his legs start bowing he'll get the diagnosis, but the two later ones are less likely to happen than the other two. I did tell her that if he needs blood drawn for another reason then I'll consider adding on this testing too. But I can't think of a reason he would need blood drawn anytime soon so it probably won't happen.

Now I need to convince Owen he wants to take a nap.... LOL! I took the afternoon off work so he can stay home and get better.

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