Post Op in St. Louis

Things have been so busy so updating the blog has hit the back burner but wanted to provide an update on Bryce's post-op appointment with Dr. Park on December 9th. The appointment wasn't good and wasn't bad...it was just an appointment very far away and driving as much as we did in a 30 hour period just wasn't fun.


Dr. Park was very encouraged by the results we were reporting back on Bryce and what all he has been doing. SDR obviously eliminated the spasticity in Bryce's legs which is awesome but we have a few "bad habits" to break Bryce of. Whenever Bryce gets excited he can fire up both his legs and arms. This is called patterning. Basically it was a response that Bryce has developed (because of the spasticity he always had to deal with). Now Bryce has to learn that he can get excited and he doesn't have to respond in this way. After years of developing this habit, it isn't something you can "train" in a short time. It will take time to break this patterning.

One area that Dr. Park was not so happy in was the scissoring the Bryce continues to do when taking steps. Basically, he still takes one leg far across the other when walking. He had modified Bryce's SDR so that they could help eliminate the scissoring, obviously that part of the surgery was not successful. The plan is to give Bryce six months and we are to focus stretching the muscles causing this. He also needs to stand and walk as much as possible. In six months we will send a video to Dr. Park and he will determine (if clear from the video) if Bryce needs more medical intervention to help with this. If it is determined that Bryce still needs help in this area, he will have a surgery to lengthen the abductor muscles to help rid him of scissoring. It should also help with positioning. There are many times (especially at night) that Bryce's legs literally twist around one another and we have to help him "un-twist" them.

There are many Good things happening right now so we won't let this hinder the good we have seen. Bryce is off of a sippy cup and drinking from an open cup. He is about 90% potty trained and some days has zero accidents. He is proud and excited as much as the rest of us are. Bryce's balance and sitting has improved and he is much more vocal and making new sounds every day. It has been a VERY EXCITING time for him and I cannot wait to see what another year might bring for him. Cohen has been a great brother. He has been encouraging Bryce more and more. He points out when Bryce is doing something that he couldn't do (so easily) before.

Cohen truly loves Bryce and has started celebrating his accomplishments more and more. He has also been questioning things a lot more. He has asked why Bryce is different - he has said he cannot wait for Bryce to talk to him. It is so tough to not break down when you hear him saying these things. We are being open and honest with Cohen and I really think doing that has made Cohen feel like he has a very important position being Bryce's brother. He is the sweetest ever - of course (like any child) he has his moments with him, but more and more he has come to understand things and has gotten so much closer to Bryce. We are so completely lucky to have such a great little family. The four of us are so fortunate to have one another and I could NOT be happier. I wanted to take time to Thank each and everyone of you that have read our story, that send texts, messages and emails. All the support you have shown us again over this past year has been amazing. We hope everyone has a very Merry Christmas and a very HAPPY NEW YEAR! Hugs from our family to yours.