I am completely ecstatic and happy to say that Macy's appeal was approved!!!! All of the services requested by Macy's hospital for her genetic/complementation group testing was approved, and it is such a relief! Whew! We will be able to get her in early next week to get the samples needed to send off to the lab in Cincinnati.
This came at the perfect time because I have been going back and forth in my head whether to put Macy through the bone marrow biopsy in September. They typically don't do them on children until they are 2 or 3 (unless their blood count is abnormal which indicates chronic bone marrow abnormalities...aka: aplastic anemia/pre-leukemia). However, since we didn't know Macy's complementation group we were thinking of going ahead with it anyways because some groups are prone to bone marrow failure and leukemia much earlier in life. Now that we have been approved to find out Macy's group (even though it can take 6mo. or more) for the results; I feel a little better about waiting. The reason I would like to wait is because I don't want to put Macy through another procedure if it is not necessary. She has been through so much with her surgeries lately (and she has another one in a couple months). Getting the biopsy is painful; she will need an IV, and will need to be put under anesthesia. Getting an IV put in in a "normal" kid is difficult; but an FA patient is even worse. Something about the disease makes it difficult to find a vein; so that results in a lot of digging with the needle in their arm to get one. She usually ends up with needle digging in both arms, and a foot before they get one. It is not an easy thing to watch your baby go through. And she has to go through this every time she gets an IV, or needs blood drawn; which is often unfortunately. So if we can avoid that we will. I am wondering if they would be willing to do it when she is under already before her next surgery. 2 birds with 1 stone? We will see.
Macy gets her cast off in a week! I am excited. She has 2 appt.'s next week. Feeding therapy and getting her cast off along with getting her blood drawn for the group testing. The following week NO appt.'s!!!! yeah....we will be camping and we have a wedding! I love weddings; they are so happy! Completely happy moments like that are so precious! I can't believe Adam and I's 5 year wedding anniversary is in a couple weeks. Time goes so fast! I wish I could grab onto it and slow it down to a slithering crawl.