We took a trip to Shriner's Hospital Los Angeles yesterday. It's something we've been putting off because we just didn't want to subject Gracie to all the examinations that would take place.
We were told that the appointment would take 3 - 4 hours (thankfully it only took 2) and we would meet with the entire team in the CAPP unit. We were told that CAPP stands for Child Amputee Prosthetics Project.
Since the appointment was at 1:00 Jon took off work to go with me and Grandma came up so she could pick the boys up from school and possibly take Joshua to soccer practice if need be.
After checking in we had Gracie's vitals taken: height, weight, temp and blood pressure.
We met first with Dr. Setoguchi. He's actually the one who greated us when we walked in. Another younger doctor (can't remember her name) sat in on the meeting. The Dr. told us all the different options we have regarding treatment of Gracie's missing left hand.
1. Do nothing.
2. Hand transplant. Only done a few times and never on a child. This is something we would never even consider.
3. Surgery. There is a surgery where the two bones in the fore arm are surgically separated and given muscle tissue so that the arm would almost have a pincher. Also something we would never even consider.
4. The last option is a prosthetic. The prosthestic would have a pincher grip on the end that would open and close when she moved her opposite shoulder.
Next we met with the Social Worker. She was there to give us advice on how to deal with things that will come up as Gracie gets older and maybe gets teased for being different. She is there for the emotional support for the family and we can call anytime if we need adivce.
Next we had x-rays done. They did both her right and left arm. Gracie did great having the x-ray done. She just sat there and held her arm still. She was such a good girl.
After the x-ray we met with the Occupational Therapist. She questioned us on Graice's abilities and showed us the different prosthetics. One was purely cosmentic and was just there for looks. Then there was the one with the pincher grip that is activated using the opposite shoulder. This one could also be fit with a pincher that looked like a hand. Last there was a battery powered one that you would have to get outside of Shriner's because they don't make them there.
In the room with us was a man (I'm not sure what his job was) who was actually born with a short arm and uses a prosthetic that he actually tweeked for his own use.
After meeting with the entire team we met with everyone at once and we viewed her x-rays. Her right arm is completely normal. The left was just as they thought and didn't have any surprises. There are just the fore arm bones and no finger bones. Her left arm is smaller and may or may not grow as her other arm does. The Dr. could see no growth spots in her left arm but could in her right (good arm). This is nothing to worry about. We were asked if we had any more questions. We couldn't think of any. I can never do that under pressure. We will go back in 2 months and decide what we want to do. We were reassured that there is no right or wrong answer. It's just what we decided is best for our daughter.
So there you have it. Right now our decision is to do nothing. She does so well with her arm just the way it is. We were told by the Social Worker (forgot to ask the Dr.) that we would be able to get a specialized prosthetic for her arm for swimming or to hold a pick if she wanted to play the guitar, etc. We have some thinking and praying to do but this is the way we are leaning right now.
