Our Angle With Out Wings XoXo

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Hey! Im Ashley and I live in the Washington area. God has blessed me with three beautiful children. One of my children has a rare form of dwarfism. We are still waiting on a dignosis, which can take up to a year. So while i patiently wait ive been doing a TON of research on could it be this or oh what if she has that...I have this blog to have others find me and as well helping others who may be experiencing the same issue's or have already been there. Enjoy to read or even chat & of course enjoy our wonderful journey that God has planed for us :D

Friday, April 20, 2012

First Shriner's Apt

We had our first Shiners appointment today. Love this place! Everyone is so nice and so helpful. Made it alot less stressful, that's for sure. After being there for 7 hours. They put a cast on her left leg to bend the knee and fix the clubbed foot. Then they put a splint on the right leg to start bending that knee. We have a follow up appointment in a week to see how everything is going. They still aren't sure what her diagnosis is but they have a idea and it starts with a k or a c called kenitic syndrome or cenitic syndrome? not sure though. They said it doesn't really have a group or name its in. They said she has alot of joint problems. I was worried if this is something life threatening. like she wouldn't live to get old like us. but they said no, not at all. Just alot of orthopedic stuff. So that was a relief! I asked if she would be able to walk once she got older, but they aren't sure right now. Alot of stress has been lifted off my shoulders and im glad things are stating to go into place now. It's alot at once i just gotta keep reminding myself to take one thing at a time and eventually things will get fixed. Well better go get ready for our sleep study test tonight. Hope Riley does okay on this. Ill let you all know when we know :) Ohh i almost forgot! Riley is now 7lbs and 2oz! Finally...I have been struggling and trying really really hard on getting her weight up. Now hopefully it stays this way lol

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