Tomorrow morning Emi and Misha have an appointment with the ortho peds surgeon. Misha is supposed to begin casting for his clubbed feet. He's going to be a bit miffed since he's so active. I'm happy that nothing invasive should need to be done. Emily is to be assessed by the surgeon to see what can be done to help her.
Emily, who came home under the diagnosis of Arthrogryposis, actually has Sacral Agenesis. This means that part of her spine, the sacrum, is completely missing. It causes her hip bones to rest upon one another, rather than the sacrum, and her hips are dislocated meaning the top of her legs are not in the hip sockets. Her knees are also stiff and her feet are clubbed. When we saw the ortho pediatrician we were not given much hope of fixing her feet, knees or hips. He said her hips would probably just slip back out of the sockets. If her knees were released so that they bend and then they became stiff in the bent position, she would not be able to walk. If they do not release her knees so that they bend, they cannot cast her feet to fix the clubbing since the cast/legs have to be in the bent knee position to cast the feet correctly.
If you're reading all this and your heart just skipped a beat, imagine how I felt while holding these two precious bundles when the doc told me all of this. I was devastated. My heart broke for her and what could be her future. I cried then and many times over the few days after we got this diagnosis. But it's been a couple weeks now and each day she continues to be such a joy. They all are. God has blessed us with some amazing children. Did I mention that Emily is already talking in three word sentences in English! She's amazing. The appointment tomorrow will be a consult. We will then take this information to Shriners to get their opinion. We have an appointment with them February 20th.
I've said all that to say this, please pray for us/them through all this. I believe God has amazing things in store of our kids, all of them, no matter how that presents itself.