Amputee Clinic & precious cargo

This morning, Isabella and I got up early and made a trip down to the Children's Rehabilitative Services (CRS) for her first appointment in the Amputee Clinic at St. Joseph's Hospital. I will get to the point of the post in a paragraph or two, but I'm going to preface with a brief story:

The appointment was scheduled for 9 AM in Phoenix, so as you can imagine, we were driving in the heat of rush hour traffic. On the freeway, it was stop-and-go, with some spots of 60 mph traffic and others at a standstill. I saw a truck that was completely filled with boxes piled upon boxes of Dole bananas. I thought to myself, man, if someone slammed into the back of that guy's truck, his day would just be ruined. Not only would his truck be banged up, but all of those bananas would be smushed into banana puree. It would be tragic. Then I snapped back into reality. Rarely, do I ever stop and think about my cargo. What if someone absent-mindedly smashed into my minivan? Here I am, driving around with my most precious cargo and not even giving it a second thought. At that moment, I put on my glasses and turned down my radio, shivering to think of that possiblity. I know, that was a morose story. But really, it does me good to give myself a reality check every once in a while -- life is just so fragile.

When we arrived at CRS, my heart was suddenly flooded with warm feelings. I know that people seem to have varying opinions of CRS, but I happen to love it. I don't love making the 45 minute drive down there or being made to wait forever as we sometimes have to. There are no comfy upholstered waiting room chairs, topiaries, fashion magazines, or ambient music. But I love being there. CRS is a world where my children are the typical ones and where the spectrum of "normal" is broad and all-encompassing. It's a place where children with special needs (and their mommies) are made to feel special -- in a good way. It's where doctors know the answers to your questions and make you feel smart (instead of rediculous) for asking them. It's a place where everyone smiles at everyone else. When I'm there, I feel grateful for the blessings that I have been given and humbled by witnessing the much heavier burdens that others have to bear. At least, this has been my experience.

Like I said, this was our first time at the Amputee Clinic at CRS so I had no idea what to expect. In the waiting area, other little boys and girls with missing arms and legs filled the seats. We were all there for the same reason. Bella and I were called right back, and Isabella weighed in at 16 lbs. 1 oz. I was told by a doctor that we would get to meet with a panel made up of 2 doctors, 2 prostheticians, and a therapist (all specialists). She warned me that I might feel overwhelmed -- she doesn't know me too well I guess.

The head doctor in the group was Dr. Ott. Here's where it gets interesting. Dr. Ott told me that Isabella's limb defect was not due to our blood clotting disorders. He says that it was caused by bad luck. Dr. Ott exclusively works with limb reduction defects, and he told me that this is a rare genetic anomoly that could not be attributed to a clot. He said that in a new embryo, there are three vessels that make up the arm. He said that for the clotting disorder to have caused the limb reduction defect, three clots would need to have formed in the same location in all three of the vessels at the exact same time. Not likely. I bought it.

Now for treatment. After answering all of my questions, Dr. Ott informed me that in order for Isabella have the ability to utilize a functional prosthesis in the future, she will need to be trained from very early on with a passive prosthesis. In other words, we are getting Bella fitted for her first prosthesis in April, when she is 6 months old. The experts informed me that Bella will suffer no ill effect from having to wear her prosthesis at this early age. She will be just as functional with her short arm as she would have been had she not ever worn a prosthesis over it. The only difference is that she will have the added benefit of being able to be bi-manual in a bi-manual world. The cautioned me that it is a very big committment to be a parent of a child wearing a prosthesis, because she will not want to wear it, and it will be a constant daily battle for years. The docs told me that only 10% of children fitted for a prosthesis end up being successful wearers of one, because it is just that hard to train a child to wear something that they feel they don't need. The doctors told me that while two handed babies are born with a part of their brain pre-programmed for the use of both hands, Isabella does not have that. In other words, she does not think that anything is missing from her short arm, and given a hand, she would have no idea what purpose it serves or how to use it. That's where the training (for the prosthesis) comes in. Other than making sure that she wears it and plays using it, there is no other treatment or physical/occupational therapy needed. Since Bella did not suffer a trauma and a loss of a limb, she will not need to learn how to do anything differently. To her, we are the strange ones, and she is perfectly complete.

I feel like I have definitely gained an understanding of her situation and the road ahead of us. I want to do all that I can to give Isabella as many options as possible for later in life. I'm all in favor of whatever I can do to make her journey easier. If that means a passive prosthesis (fake hand), then that's what we'll do.