Saturday, October 17, 2009

Hopefully Home....

Well, we are still in the E.R. Our neuro just stopped by and said that we could stay another day, but if cardiology approves we can leave when ever we want to. Hurry up Cardiology!!!! LOL!

So far, nothing has shown up that would have caused new damage etc. It looks like he just all of the sudden started metabolizing his meds a little differently. He has been on the same doses of seizure meds since he was about 7 to 9 months old. We have never had to adjust because he never gains any weight.

We have had confirmation that his seizures are actually Infantile Spasms. We just lucked in to a combo of meds and diet that works for him. Whatever is going on GI- wise and the formula that he is only makes a ketogenic diet, one of the treatments for Infantile Spasms. It wasn't done on purpose - a happy accident. :) So, we are going to increase the dosage on his meds and split them up into two doses per day instead of one. That will keep his levels more even. Hopefully, we won't have any more of those seizures again. It was a pretty scary one, as I said before. They are calling it a Grand Mal - at the very least it was a generalized seizure involving his entire body. Five minutes is a long time for his age. And the fact that this was the first one he has ever had that was this involved. We think he still has breakthoughs every once in awhile, but it only involves his eyes.
Lucky us - one of the 10 channels the hospital gets is PBS Sprout. Yea us! We have had a fun filled night/day of Barney, Sesame Street, Bob the Builder, and Caillou.

Here are some pictures below:


Puny, sicky baby:




In the CT scanner - this kid LOVES x-rays!



What a difference a day makes - chilling out with Sprout (notice Daddy in the background):



Hugs!
Steph

P.S. Here are some pictures that I found on our laptop - we don't use it as much as we used to:
Chillin with Daddy - about a year old:


Halloween 2005 or 6 - I think he actually looks better here. Maybe it is the that he is chunky. He was about 2 or 3.

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