We headed to Shriner's hospital yesterday. Derek, Ryan and I left the bay area and made the 2 hour drive up to Sacramento. Ryan did great in the car - not a peep out of him. Once we got there and registered, we waited....and waited....and waited. By the time we saw a doctor, we had been waiting for 2 1/2 hours. We were happy that someone else took a look at Ryan, at least for that second opinion. The doctor we saw knows Dr Rinsky - she told us that he is a great doctor, well-respected and after looking over Rinsky's notes on Ryan's treatment so far, she let us know that everything that has been done thusfar is what should be done and that we would not get any better care than we are getting with Dr Rinsky at the Shiner's hospital. She also let us know that if it were her child, that she would have them with Dr Rinsky. That was reassuring. We did, however, make an appointment to head back and see an upper extremity specialist October 2nd, mostly for Ryan's right elbow, which barely bends at all.
We were told that the hip surgery planned for Ryan in a few months is a bit controversial. Sometimes the hips actually become more stiff after the open reduction surgery. So we will have to do some research on that one. All in all, it was a hard day, as we basically had to re-live all the heartache that comes with a diagnosis of amyoplasia, but we are thankful to live so close to a great orthopedic surgeon and we will continue to try our best at working with Ryan to get him as close to functional as he can possibly be.
I want to thank all of you who have donated books to the book display at Ryan's therapy. I can't tell you how proud I am of my family and friends coming together and helping me with this project. Thank you! EVERY single book there is now one that has been donated on Ryan's behalf and they removed the old, torn and battered books that were previously there. It looks wonderful. The therapists are also using these new books during therapy, especially with the kids who have trouble eating...I guess it distracts them and it has made a real difference, so thank you again!!!!
My plan this weekend is to get a video posted here to show you what Ryan is up to. He has quite a charming smile and is so sweet and easy. Devin & Lily both start preschool this week and are very excited for that. So is their Mom!
xo
Kiersten
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2 comments:
WE DEMAND VIDEOS!!!! :) Lali said it, not me. :)
Well I'm glad you've paved the way for our Shriner's visit. My goal is to try not to hold out hope for a magical cure (why do us moms do that?). And I know what you mean about reliving the heartache when more/different doctors say the same things to you.
I also remember Lali was born with her elbow so stiff. I remember we took 800 pictures the day she was able to bend her arm enough to touch the other one. We even had them cast the elbow bent, but that only seemed to improve things a little (mostly it made her really awkward to hold). I researched all sorts of elbow splinting and surgeries, but the stretching did so much that I haven't thought about it in a while. I got a lot of information here:
http://www.avenuesforamc.com/publications/news/news1200.htm
As far as the hip surgery, if you want a second opinion you might want to come see our daughter's surgeon, Dr. Mubarak, down here in San Diego. He has done surgeries on children with AMC-amyoplasia. And, yes, this is a shameful ploy to get you to visit. :)
http://www.avenuesforamc.com
/publications/news/news1200.htm
Let's try that link again. :)
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