I haven't updated about Abby in a while, because there's not much to update. She's still in pain and unable to walk for more than a few minutes at a time. Thank goodness for the tiny kid carts at Trader Joe's that allow her to walk while acting as a walker! Holding her head up is very painful when she is standing. Her ENT, who knows Abby very well, was shocked to see the changes in her ability. He said she had better be doing jumping jacks the next time he sees her!
We are still waiting for Dr. C to figure out what to do. I emailed on Monday and he is on vacation this week. I will be emailing again next week in hopes that we can finally get some answers.
The researching I have done has shown me that whatever he decides to do will be complicated, painful, and challenging. It could require a lengthy hospital stay. Right now, we are just praying that this can be repaired. We realize that she may very well be out of school for a good chunk of time. It's not what we want, but this has to be repaired. It's getting worse and she is in more pain.
The other issue is that her ribs haven't been expanded since January. It's been 7 months now, but I was told he would do it with this neck surgery. The nurse practitioner finally told me in Monday to go ahead and schedule. I called and the next available is November 1st....10 months since her last expansion. That's obviously not ok, when it's supposed to be every 4-6. So we are praying that something opens up, or it can be done during the neck surgery. (Although, my thought is that this surgery will be pretty traumatic and Dr. C doesn't usually like to cause extra trauma in these situations).
It is frustrating, to say the least. We are trying to be patient, but we need answers. Please pray they we get them soon so that Abby's neck can be corrected and she can begin to improve.