33 Day Update

Hard to believe that 33 days have past. We have been waiting to update after an appointment with Kenneth's doctor. We decided to postpone the appointment a few more weeks out from the treatment.
Kenneth has been a lot more talkative and focused. Perhaps one can call it cognitive improvements. Pre treatment he was on 1.5ml x3 daily of baclofen. We decided to take him off prior to treatment. As of today, we have not put him back on and his tone has reduced. Pre treatment he was ready for another surgery in his legs, now with the reduction of his tone while not on the baclofen, it will be interesting to hear what the rehab surgeon has to say. His therapists agree that he is more cognitive and has a lot less tone than pre treatment while on the baclofen. He is also more willing to do tasks and therapy walks in his walker. His thumbs are less pronounced inward and while making fists. Less compulsive and involuntary movements.

My wife Reyna has shown changes. Pre treatment she had a "deer in the headlight" look and would say "what" as she first would not understand or unclear of what was said. Also, she would have multiple projects going on around the house half completed. I have not seen this since we have been back from treatment. She seems a lot more focused and on the ball. Just a lot sharper and on a mission around the house or while shopping. Her balance has improved as well. Also her texting has improved. In the past she would send me a text message that would be sum what garbled. I would have to call and do the yes no questions to get the answer. Now they have been precise, i.e. " buy tortillas yogart bread milk".

Strange how these things just can change in a short time. We still have a long way to go, but I am waiting to see what the next few months bring us.

I will update after a visit with the doctor. These doctors are the ones that have been following and tracking other ASCT kids.

Our improvements seem to be consistent with others. Here is a cut out of an email from a parents doctor out east. East from us that is..

" Thank you for all the useful information. We were at Children's Hospital of Philadelphia on Thursday, our muscle skeleton doctor has had three kids go to Germany and three kids participate in the Duke program - what she stated is that the younger the child, the more results they are seeing in both cognitive and motor skills, the older children are seeing most improvement in cognitive areas. All good news to me- all of the kids had marked improvement."

Other than that, still looking forward to new things that will arise.

David