We have finally started a new course of treatment for Tiny Daughter M. We are putting her on steroids and I am not thrilled, but at least we are actively doing something to try to make her better.
She currently has two specialists who disagree about what she has and how to treat it. Thankfully, we have ruled out anything life threatening, but one doctor has concerns that this might be a long-term problem. The other one thinks that if we leave her alone she will get better by herself, but that trying the steroids won't hurt. The lack of agreement is not encouraging to say the least. Every medical professional we have seen has told us how unusual her case is. Also, not encouraging.
A friend recommended today that we take her to Seattle to the children's hospital down there. I don't mean to panic, but it is starting to sound tempting. We will give this treatment a shot first and I know S, my wonderful husband will keep me from panicking too much. Thankfully, my boss has been totally great about the time I've have to take off for all of her appointments. I don't know how I would deal with all of this if I has to worry about losing my job, too.
It encouraged me that she has been such a little trooper about everything. She doesn't whine or complain about not being able to get around very well. She just looks for other ways to do what she wants and enjoys what she can do. She is a very good role model for her mother.