Life off Steroids

It's been a while since I last updated everyone on Mighty Man. Things have been crazy around here with rearranged therapy sessions (a few of his therapists are going on vacation), planning for a first birthday, and organizing our trip to Detroit. Marek is doing well! He has been super tired during the day. We had a few days where he was only awake for 5 or 6 hours. When he is awake though he is much more alert now that he is off the steroids. This is also our last week on Topamax!

Our appointment last Wednesday  left us sort of confused. Our first appointment was with the neurologist that will be guiding us through the Ketogenic diet. He was very supportive of Marek being a candidate for the diet and wants to do one more EEG right before we initiate the diet so we have a better baseline to compare things to. We met with the dietician, Morgan, and were told that Marek would probably start the diet a week later than we thought, right around July 27th. Then we went to the appointment with Marek's original neurologists who in my opinion seemed "checked out". They weren't sure if we should put Marek on the diet or not. His one doctor literally said it was up to us and if we were okay with Marek having a seizure a week as long as he was developing we didn't have to start the diet. My jaw hit the floor. What mother would be "OK" with their child having a seizure a week. They have told us to talk to Dr. Chugani and have basically deferred all decision to him right now.

We also told them that we are worried about how much Marek has been sleeping during the day, which conveniently he was sleeping when we got to the appointment. It took a lot for the doctor to wake him up and their conclusion was that he is being over medicated. He is on three "downer" medications right now, which he always has been on them but the doctors feel that the steroids were counteracting the side effects of these medications and now that he is off the steroids, the side effects are starting to show more. They told us to take him down 1.5 ml(per day) with Onfi. That seemed really fast to us so we have once again made our own wean schedule and will bring him down a little slower over the next three weeks.

Therapy is pretty rough right now. Since schedules are changing, therapists are coming during nap time, which on top of being sleepy from being over medicated, is equalling a lot of meltdowns. When I work with Marek in the few hours he is awake he does work really hard and his sitting is really coming along. Ryan timed his sit the other day and he is up to 3 minutes sitting by himself! Woohoo! Marek hasn't been rolling over lately and we are hoping it is because he has been extra tired or because playing with his toes is his new favorite things to do and clearly you can't play with your toes on your tummy.


 Therapy is definitely changing though. I have found myself lately feeling a little heartbroken when working with him because I honestly feel that since coming off the steroid, Marek is more aware of things and I see him get frustrated when he can't do something that he knows he should be able to do. It's like his mind finally knows I need to move to get that toy right out of reach, yet his low tone in his trunk makes it impossible right now to even army crawl. He also is voicing his frustrations much more. When he even slightly starts to faceplant while sitting he will start to cry or when his arm gives out during tummy time he screams. I hate that IS has taken away so much from him and made things so difficult to attain. But we'll continue to fight hard nonetheless.

I haven't heard from Detroit yet with times for each appointment but they did tell me that we would be traveling to a different facility for our 24hr EEG about a half hour outside the city and then the rest of the test will be done at Children's Hospital of Detroit. I will be working on booking hotel rooms tonight. July is going to be CRAZY but in a good way! Marek and I will leave for Chicago on July 9th, Ryan will come up the next day. We have Marek's first birthday party Saturday the 11th at my parents house, then we leave Sunday the 12th for Detroit where we will be up there for close to the entire week then back to St. Louis where we have Marek's second 1st birthday party here in Swansea on July 18th. Let's all pray this goes smoothly...YIKES!!!! I am looking forward to celebrating Marek's first year of life. The kid has had one tough year and deserves some fun.

Ryan, Marek, and I go for our genetics appointment this Thursday where they will draw blood for the whole exome sequencing. They will be testing every single one of our 30,000 genes! And these results will take 3-4 months to come back, so we'll wait again. We've become very accustomed, but not necessarily thrilled with all the waiting. Our little buddy continues to amaze us every day and each day we learn just a little more about how truly blessed we are to be his mommy and daddy.

I most likely won't update the rest of the week so we wish everyone a happy and safe 4th of July!