As we near the remaining 28 hours before Macy goes into surgery....I can't help but feel conflicted. She is getting surgery on her left hand where they will be removing her "floppy thumb" and moving her index finger over to create a working thumb from it. This 3-4 hour surgery makes me incredibly nervous, and in many ways I am really going to miss Macy's floppy thumb. It is a part of her, and just the thought of it getting cut off makes me sad. I think Macy will miss it too. She spends a decent amount of time yelling at it, smacking it around with her other hand, and chewing on it. In a way, it has become one of her favorite "built-in" play toys. However, I know in the long run (as long as everything goes as planned) that this surgery is what is best for her. She will be able to grasp things with a pincer grasp, and will be able to hold things a lot better. Having her thumbs the way they are has kind of put her a little bit behind in being able to pull herself up into a standing position. She can't quite get a good enough grasp that she needs to do it, and hopefully after she gets her cast off she will be able to do so much better. As I mentioned before I am a little worried this may challenge her learning to walk; but I am sure she will figure it out. She is a laid-back happy girl, but she is also a fighter! :)
I do have an update on our appeal, kinda.....the insurance company's 30 days to respond was up today so the Dr. office called them. They claim to have never received it even though it was faxed AND mailed to them. So it had to be sent again today....UGH! I was livid! The insurance company is such a huge stressor that I cannot stand dealing with sometimes.
Macy had an appt. today with a GI specialist. We are trying to figure out how to help her reflux. He assured me that the meds' she is on for her reflux is keeping it from damaging the esophagus at all. That was my main concern since Macy is so prone to esophagus and GI cancers. She is getting a liver ultrasound next week though to make sure she doesn't have any tumors growing on her liver. We are going to try using one of those gel thickeners to see if it will help keep her formula in her tummy at night during her continuous feeds.
I would like to ask everyone to keep a little girl named Lucy and her family in their prayers. Precious little Lucy also has fanconi anemia, and is already showing some bone marrow abnormalities (pre-leukemia). She is only 8 months old, and her parents have already lost her sister at 2.5 years old to this disease. They really need your prayers right now to get them through this really tough time. I can't even imagine the immense grief, shock, and pain they must be feeling. I pray that this family gets their miracle that they deserve to save their little angel.