Ryan's update

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

On to the AFO's

We took Ryan's casts off on Thursday night. Unwrapping them felt like a little mini Christmas for me, as I was super excited to be done with the casts! Ryan got a well-needed bath at Grandma's house after the casts were off. Friday morning, Derek and I went down to see Dr Rinsky with Ryan to pick up his AFO's and to be schooled on how to put them on. The funny part about that is when we got home, I realized (after reading the instructions that came with the AFO's), that Rinsky had them on the wrong feet. I guess men just really don't ever read instructions, huh?

Anyway, here are a few photos of Ryan's feet from Thursday night plus one really cute one from after bath time. We will see Rinsky in a month, we will head up to Shriner's hospital on Aug 25th, we will continue to see Amy and Jennifer for PT and OT at Stanford weekly and in a few weeks, we should be begining home visits from Early Start to assist in more therapy for Ryan. Yes, I said in-home....HOORAY! Plus, I have a call out to Laelia's OT (Laelia is our little friend in San Diego) - this OT has configured the coolest elbow splint contraptions and I hope that maybe if I bring Ryan down there to San Diego, maybe she can make a pair for him. Elbows would be nice to have :)

I will get some more pictures up later of Ryan's AFO's so you can see what I am talking about. Right now, the bar seems to be bothering him the most and when I say bothering, I really mean it makes him scream at the top of his lungs non-stop until I have to take them off before he *up-chucks*. Hopefully he will get used to them soon.
Love,
Kiersten