Progress and Neurology Appointment

Exciting news!  Earlier this month we nominated our awesome neurologist, Deepti Chrusciel, for the St. Luke's Faithful Healer Award, and she won!  She is so very deserving of this!  It's a great honor, only 2 doctors and one resident receive this award each year.

We did have a neurology appointment yesterday, but Dr. Chrusciel was not in clinic, so we saw another resident, and Dr. Arun, who we like very much.  We will continue to decrease Banzel until we are completely off of it, and continue to increase Lamictal every two weeks.  We didn't make any changes right now, but are supposed to call in two weeks and discuss beginning to wean down either phenobarbital or keppra.  I will definitely be glad to see him come down off some of this medication!  He takes 5 meds in the morning, 7 at night,  and gets either a laxative or vitamins with his afternoon meal.  At this point he is taking: Phenobarbital 8 mls once a day; Klonipin (clonazepam) .125 ml once a day; Keppra 1.5 mls twice a day; Topamax 6 pills (90 mg) twice a day; Banzel 1/2 pill twice a day; Lamictal 2 mls twice a day; Nexium 5 mg twice a day.  That's quite a list!

We are still seeing progress as we come down off Banzel!  Levi is doing an awesome job of holding his head up.  We are noticing that when we pick him up, he catches his head from falling back, and it doesn't flop forward like it used to.  He is listing to the right a lot, but it seems like he's bracing his head on his shoulder.  For support maybe?  He is sitting up more.  Becky, our vision therapist, brought a Bumbo chair yesterday and, although we had to roll some blankets for support, he seemed very comfy and liked sitting in it.  Today our OT, Diane, tried some different things for support that also worked very well.  We have been feeding him in his highchair now, at least for breakfast and lunch, and this afternoon he sat in it and watched Nick Jr for nearly an hour while I got some chores done.  He only let his head drop forward once!  Also in OT today, Diane made some splints for his elbows so they can't bend while we put him in crawling position so he can bear weight on his arms.  As many of you know, his arms have been very tight.  He really hates this, but he only has to do it for 2 1/2 minutes, and the difference in his arms after such a short time is amazing!  He's not nearly as tight, and is moving his arms much more, particularly his right arm.  Today he actually brought his hand up to his mouth/face and held it there for a long time.  He usually only  has his hand by his face when sleeping on his stomach, so this is huge! He has also started moving the index finger of his right hand.  I'm so excited to have good news to report, and to see him moving forward!  Thank you for the prayers, we definitely are feeling them!  Please continue to pray for Levi!