Edward gave me his first little smile this morning! It was the most precious thing in the world and it melted my heart! I was chatting with him and he gave me a 'look' and he smiled! As much as his face allowed, he smiled! I have been wondering when he would be smiling and he read my mind.
So, we had our orthopedic appointment today to take another x-ray of his arm and to cast his little feet. His arm is healing wonderfully, thankfully. (I could tell of the week we found out about his arm, but I will just tell you that I prayed and told Jesus "please, enough! I can't handle anymore.") I am super confident in our doctors at Children's. Our orthopedic doctor is top-dog and heads up the Arthrogryposis clinic at Children's. He told me that Edward's clubfeet are pretty severe. I didn't really think that they were, but they are. I was glad to start the casting. (Would have started sooner, but we had to wait out his arm.) I was jazzed to start on the casting...until we got home. My poor baby. He is so uncomfortable. All he wants to do is cross his legs and get back into his position. So needless to say, it is going to be a long night. Well, a long casting process.
There is so much I could talk about. It is late and my mind is not with me anymore. My body aches me to my bones. It could be mastitis or it could be from sleeping on my couch for the last month. I realized that I have not been able to relax my muscles for who knows how long now. But why should I complain, at least I have all my muscles. Edward doesn't. Doc said that muscles he doesn't have, he won't ever have. I wish I could give him everything he doesn't have. I wish I could fix it. I want to crawl into his body and make it all better. Why can't Disney be real. I could call on my fairy godmother and make my little baby all perfect. Bla such is life.
Oh dear I completely forgot how hard the first two nights after casting are. So sorry you have had a hard day. The way I understand FSS is this: it affects the teeny tiny part of a gene that codes for muscle devlopment. I have never heard it said that muscles were missing. It's more like they are overexpressing. Maybe it's a little bit like when you get a Charlie horse and the muscle won't relax but it's not painful.
ReplyDeleteTry to rest and look for ways to simplify your daily routine. Cook two meals at a time and freeze one for those Dr. appt days. Saves time. Saves dishes. We bought a Costco sized bag of paper plates to use when I was wiped out. My oldest was 11 so he could help with a lot, but it made sense to save the effort in every area I could!
Hope this helps!
Dorie
What?! Disney isn't real??? Next you're gonna tell me there's no Santa.... :)
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