The wean has begun!

Hello everyone,

Just wanted to send an update that feels very good to send!

Sammy had a 4 hour EEG on Tuesday and it came back clean! This is absolutely wonderful news because it means that he isn't haven't any seizures and the hypsarrhythmia is gone. However, it means that we have to start weaning off the medication, which we are very nervous about after what happened when we weaned of the prednisolone. We wish we could stay on the meds! We were so strongly warned about all of the side effects that Sam might have on the ACTH, and he has hardly had any. He's been sleeping well and as happy as he can possibly be. The only real negative effect is that just this week his blood pressure has started to creep up.

So unfortunately, he can't stay on the medication forever. But his neurologist is going to do the wean really really slow, in hopes that the seizures do not come back. We just started it this week, and he won't be completely off the medicine until the end of May. Even so, we are calling on you all for lots and lots of prayers...send them Sammy's way! Please pray that the seizures stay away and he continues to do well. His development has also kicked back in now that the seizures are gone. He is rolling like crazy all over the house! And for some reason, even though he has a million toys, he is obsessed with rolling right over to nearest wire, or electrical outlet, or lamp that he can find! We are amazed that it is finally time to baby-proof the house :)

 We are also starting his physical therapy back up again, so hopefully he will make even more progress. It feels so good to see him moving around on his own. But the best is seeing him smile and laugh all the time. He's so sweet and happy and brings us so much love and joy. And he can't wait to be able to go outside, get back in the pool, and see you all again...it's been a long winter!

Thank you all for your continued love, prayers, and support. They mean so much to us. And, they're working! Hope everyone has a great weekend,
Love,
Laurie