Had an appointment today. And confirmed that Ainsley really is one of a kind. Her particular cerebellum malformation has NEVER BEEN SEEN. Yeah, yeah I already new that, but the neuro doc consulted with a new "expert" that I read about on the Cerebellar Hypoplasia Facebook support group. He relocated to Seattle a couple years after Ainsley was born and works closely with Ainsley's doc, lucky for us. They are both researchers. Normally it takes 9 months to get Dr. Dobyn to read your child's MRI. But since they work together our doc chatted with him and he reviewed her MRI. In decades of research he's reviewed over 2,000 of MRI's and none are quite like Ainsley's. This means that we have no basis of comparison. It sucks. He is going to admit her DNA into his research for further genome analysis. That won't make much difference to her day to day life. We'll just keep on doing the best we can for our super special girl. Even though at the moment I'm not so happy I am thankful that Ainsley is.
Tomorrow we see the orthopedic surgeon. She'll get hip x-rays and with any luck her hips still look good. Our hope is that her second hip surgery and spica cast, 3 years ago, was the last. Although I hate losing 2 days this week driving across the bridge I'm really happy to get this appointment. It was a last minute cancellation. This specialist was booked out to January so I was going to switch docs after he cancelled our October appointment. He isn't the surgeon that performed Ainsley's hip surgeries, who left to become Chief of Staff at Shriner's Hospital in Los Angeles but he is the new "hip expert" at Seattle Children's and he inherited our case.
I'm looking forward to the weekend as I'm sure you are too. This week we fixed up our outdoor furniture (which is iron and rusting) and had some trees cut down. It's been a lot of work. I'm tired. Oh yeah, I think I already said that. But really. I am.
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Oh Susan. I often think of all the people in the world trying to make themselves different than everyone else. And when you are truly different, special and unique, it isn't all it's cracked up to be. I'm so sorry. As if you don't feel lonely enough as it is sometimes. But, you are right - Ainsley is happy and sometimes that's all we can focus on.
ReplyDeleteI hope the ortho appointment went well yesterday. And I can't wait to see the photos from your fantastic photo shoot! I am wondering what props you used...
I hope Penny is helping making you feel a little better. Rooney is totally healing for me. Oh, meant to tell you that we have a goldfish named Penny. Funny.
Big hugs! Can't wait till October!
xoxo