Steve and Rachel and I head for Shriner's Hospital in St. Louis on Monday. Rachel is scheduled for an evaluation Tuesday morning. This a part of our journey that we never expected! When we accepted Rachel's referral, we knew that she had a hand difference and that there wasn't anything that could be done to "fix" it. We were perfectly okay with that. We knew she'd end up doing everything everyone else does, just a little differently. And she has. We did want a diagnosis, simply because having a name for her condition seemed important. If nothing else, knowing the name of what you are facing makes it less scary.
So, we had our doctor refer us to an pediatric orthopedic specialist. We went and had x-rays done on Rachel's arm and hand. It was actually kind of cool to see her perfect little arm bones on the computer screen. When the doctor came in, she had already seen the x-rays and had brought the clinic's hand specialist with her. Both of them were visible excited, as in bouncing up and down. The doctor quickly examined Rachel's arm and hand and announced, "We think she's a good candidate for a toe-to-thumb transplant! We're sending you to Shriner's because they have a guy that does the surgery." Steve and I just stared in surprise. Now this was a new thought! Before we could formulate any questions, the doctors were gone and we were handed referral forms for Shriner's.
So, we've researched toe-to-thumb transplants. Obviously, we have a million questions. There isn't a lot out there about kids with congenital hand malformations who have had such a surgery. Apparently, Rachel is unusual because her arm and wrist bones and the associated muscles and tendons are all there and all perfect. She just doesn't have a hand or fingers. From what we have researched, doctors may be able to take 1 to 3 of her toes and move them to her little hand to make a "thumb" and possibly "fingers". Children recover from the surgeries quickly and most have functional use of the "fingers".
So, we are heading to Shriner's to see if the doctors there think Rachel's hand has enough of the basic structures to make such a transplant work. My Mom asked the other day what I hoped they would find. My honest answer? I don't know. Obviously, having the use of a thumb or even better, a pincer grasp could make a HUGE difference in Rachel's functioning. (Just think about going through your day with only one hand and how frustrating it would be.) However, it is a grueling (and somewhat gruesome) surgery and recovery. And Rachel is only 2. Then there is always the chance that it won't work. That, of course, would be the worst case scenario. So basically, we are having to make a decision by trying to guess what Rachel would some day want us to do. It's hard.
Please pray for us, for many things. It will be a looooong drive and Rachel is not exactly a fan of sitting in the car for any period of time. We have no idea what kind of testing will be done, but we suspect more x-rays and an MRI, which would require sedation. Rachel won't be able to understand what is happening to her or why. Steve and I want our endless questions answered, so we hope the doctors will be patient. If surgery is deemed possible, then we will need to make the decision of whether or not we want to proceed. Then we have to make the loooooong drive home. We need your thoughts and prayers these next few days!