After researching and reading up on Botox and how it all works in regards to CP I wanted to get more information regarding CP, botox and TYLER. Not just botox on the test subjects but what kind of things it can do and for who.
I took the information with me to Shriner's a month or so ago and got some information on Phenyl treatments and took it home, googled and called a Doctor ( did I just write that!) name Uncle Barrett. I needed a better more informative place to look.
As his family I also wanted to know his opinion. He was not as familiar with it but he did offer a suggestion. He said get in to a physiatirist. Lucky for me I was a step ahead and had called. We had been on the "list" for several months.
The orthotist ( Brett) suggested we call Dr. Kwasnika a while back. I called and set up and appointment and we were on the list till Feburary. Someone we got moved up till December. But from what we hear she is the best. The only problem that we encountered was that she only takes on "interesting" cases and otherwise lets her other associates take the case. So we were a little disappointed to not get to see the "BEST!"
Ty's appointment was on December 23rd. We drove into Pheonix after his PT and OT and we were ready to discuss his CP and what kind he has( no one has ever discussed it with us) and whoat the course of treatment should be for him.
As we met with the NP for Dr. K we were met with a lot of questions and answers. BUT we were also told Ty was a unique case and Dr. K came in.
We still don't have an direct answer as to the type of CP he has. ( IE spastic displegia, hypertonia etc) what we do know is that he is Spastic. That it effects both legs but one leg more and it has a SLIGHT effect on his left arm. It is also not consistent. Meaning that his legs are not always super spastic and his arm is working. SO no "diagnosis" other than CP was offered.
The docs are amazed at how well he is doing. He is very stable for how his feet look. If we don't get some kind of help for him on his feet and start loosening up some of his muscles we run the risk of hurting his bones in his feet. Right now his feet are OK but we may have already done some damage so the sooner we get them fixed the better.
WE are looking at doing the Botox after we get inforamtion from Shriners and get the consult we are traveling for. But Ty is a candidate for Botox and Phenyl. Now it is a faith based decision by mom and dad to get what is right for him.
I really enjoyed the meeting with the doctors because it reiterated that I was doing all I can as his mother. In the back on my mind I wonder if I am really truly doing enough for my child. There is a tinge of guilt mixed in because there are some damage done to his feet but he is walking and I would NEVER discourage him from walking.
They said that he is doing so much more than he should be doing, He is more stable on his feet that he should be given his current feet positioning and muscle spasticity. But overall they said he was more of a miracle than they have seen in a long time.
We left with another person in awe.
We left with more information to help our miracle.
I wish you could all met him. He is so sweet and has something that you can see that is different. He has unconditional love.
1 comment:
It's sad that it's so rare, but every once in a while you come across a doctor who REALLY CARES, and it makes the biggest difference. And it's nice to be reassured that you are doing all you can for your child. I think every mother has that tiny doubt, but to have it confirmed by a medical professional is totally reassuring. We are excited to see you guys and Tyler the Miracle Baby! WTG Ty!
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