Finally a 24 Hour EEG

Marek has finally adjusted to his medication, Sabril/Vigabatrin. When we started the medicine last Friday he was very tired and fussed all day and night. Over the weekend we have seen him slowly get his personality, stamina and strength back. It was scary while he adjusted to the medication because we are always second guessing whether his inability to work at therapy is due to the IS regressing his skills. It is reassuring to us to see him holding his head up for long periods of time again and trying to figure out how to roll over from back to tummy.  Marek has had some rough therapy sessions these last two weeks because he has been adjusting to his medicine. Hopefully now that he is back to his old self again we can see him make some gains in his development.

Although we haven't seen any of his classic spasms we have been noticing him doing a lot of strange, involuntary movements with his body. We have been wondering for the last few weeks whether these movements are different forms of spasms or if Marek's IS has evolved into different seizure types. The only way to know whether his movements are normal baby activity, spasms or seizure is to capture the movements while hooked up to an EEG. Most EEG tests are 45 minutes which I have felt are not long enough to give us conclusive results on what is going on with Marek. I have been fighting for a 24 hour EEG for over a month and was FINALLY granted one. We will be admitted to St. Louis Children's Hospital tomorrow morning at 8:45 am. We will stay there over night and be discharged some time Thursday. We are very anxious to see the results. We are hoping that all the little movement he makes are not seizures, and definitely not spasms since he has so many throughout the day. Please pray for an improved EEG reading for our little guy tomorrow.

Marek had a a nutritionist come and evaluate him today and he was approved for services once a month. Marek sleeps in 30 minute increments at night (another reason we are wanting a 24 hr EEG so we know whether he is waking up because of seizures/spasms or because he has developed a bad habit) and drinks 8 bottles throughout the night. During the day he could care less about his bottle or baby food.  His nutritionist is going to make sure that his diet is supplemented correctly since he has been on steroids for half his life.  She will also make sure he is receiving the correct nutrition since he has the most disorganized eating schedule.

We are still waiting of the results from the parent chromosome test which will tell us whether Marek's  abnormality is anything to worry about. We should be getting those results as well as his retina test results this week.

We will let everyone know how tomorrow goes as soon as we know.