At the end of March Ryan and I headed up to Seattle Children's Hospital. We were lucky enough to make this journey with our good friend, Alexis and her daughter, Laelia who also happens to have amyoplasia-type arthrogryposis, and yes, that is the dianosis in case anyone wasn't clear. We met the geneticist who literally wrote the book on arthrogryposis and has spent the past 30 years of her life studying the condition (Judith Hall). We also met with an upper extremity as well as a lower extremity specialist. Things went well. The general wrap up quick version was:
Geneticist - Ryan's type of arthrogryposis is not genetic (they have found amyoplasia is identical twins, with only one twin affected). Nor is there any they have found that links it with anything I could have screwed up during pregnancy....nice to hear.
Upper extremity specialist - I begged this man to write me a prescription for serial casting for Ryan's elbows. I have always wanted to try to get him in casts to gain range, but nobody has been willing to do it. Finally - I found one - he wrote me a prescription for serial casting. Hooray. Once I got back to California, I found out the prescription is useless since that particular doctor has no hospital affiliation here.
Lower extremity specialist - gave me his input of not performing surgery on Ryan's hips - to just leave them alone. That is the current trend, not surgery. The plan is to rotate his leg, from above the knee down. So, no big decisions at this point - maybe early next year.
We had a great visit with the PT there. She was pleased with Ryan's mobility and applauded the work we have put in with therapy (3 times per week for the first 8 months, twice a week since then). She was impressed with Ryan's ability to balance on his knees and his emerging knee-walking - she asked how I knew to work on knee standing and I told her I read it in the Arthrogryposis Atlas (the main medical book by Dr. Hall). This PT replied "oh - I wrote that section". Nice.
So - that was Seattle - good information, but really not too much changed (besides not touching the hips). Good trip and great to see our friends. Ryan and Laelia had a blast - it was great to see two kids with the same abilities play together! It seems that our next doctor visit will bring us back east to Shriner's in Philly. Apparently the orthopedic surgeon who needs to be Ryan's doctor is there, so planning that trip is in the works, as are several surgeries that will bring us back east over the next year. I have blown off the May appointment with Dr. Rinsky. For being our local Stanford orthopedist and having a great reputation for being great at surgery, his lack of involvement, action and plan for Ryan, other than Ryan being comfortable in a wheelchair, has never worked for me, so I have shut that door for good.
Since then, Devin has turned 6, Ryan has turned 2, I've been to two weddings - one in Mexico (with 2 weeks of Montezuma's afterwards), the other at Sundance resort. Devin has graduated kindergarten and has lost not one, but two teeth within the past 2 weeks. Lily has completed preschool and has also performed on stage for the first time in a tap recital..... and that brings us to date. Now - the most recent thing is that Ryan
Anyway - I could tell you all about it, but really - a picture is worth a thousand words.....video even more.
xo
k
