My Little Fighter - Hyps Are Gone!

I am so happy to report that Aaron's EEG on Tuesday 11/24/09 was normal with no Hypsarrhythmia. Infantile Spasms can be so hard to control, and many times they return, but we have been blessed with another window of opportunity to help him improve and progress. I am so grateful! He has to continue the ACTH injections for at least another 6 weeks and he is also still taking .4 ml of Keppra twice per day and 500mg of Vigabatrin twice per day. I'm not terribly concerned about the Keppra because its a very low dose that has not been changed since he was 2 months old. Prayerfully he will continue to improve so that after weening the ACTH we can ween him from the other meds before he is two. There I go a gain "planning", but I'm doing better each day. My little man has been teaching me how to celebrate the "here and now" and TODAY is a great day! Here is a video of him on Thanksgiving morning.

As I had hoped, despite the delays and regressions caused by the IS, his body still progressed via ABR. Here is a video of him this morning. A month ago, I could not put him in this bouncer without him collapsing forward and hitting his head on all of the toys. Lately, while being held in a reclining position, he has been forcing himself upright. I took that as a sign that he was getting tired of being held in a reclining position, so I put him in the bouncer again to see what he would do. Its kind of dark but you can still see him holding his head up and turning it from side to side. He can't weight bear yet so I put towels under his knees for support. He has been a lot more verbal lately too.You can hear his little squeaks sometimes in the video above his sister'scommentary :). We are at about 183 manual and 820 machine hours.