Perhaps the biggest decision we have made since Addy's arrival is to not fit her for a prosthetic. Again, this decision was not made lightly. Addy's limb difference is lower on her forearm, giving her full range of motion in her elbow and the ability to hold things, reach for things, and adapt to her surroundings pretty easily so far. We want Addy to be able to use her arm as much as possible, and feel that trying to strap a cumbersome prosthetic to her would hinder the use of her arm versus help her. We know that there may come a time when Addy wants a prosthetic, and if that time comes we will move heaven and earth to get her the best prosthetic on the market. Until then, she is working hard to strengthen her fine motor skills, strengthen her core muscles to help her with balance, and continue to utilize her little arm.
I have to explain the decisions we have made on Addy's behalf, what we believe to be in her best interests, so that you understand why I was so frustrated with today's visit to a new pediatric orthopedic specialist here in Chicago.
I was very nervous to find a new specialist here in Chicago after having such an amazing experience at Cincinnati Children's during Addy's first visit at three months old. The purpose of the visit was not to obtain any new information about Addy's limb difference, but it was recommended that we do a check up once a year to make sure her muscles were developing properly and to ensure she is meeting all age appropriate milestones. I knew that it was going to be a stressful visit since big brother Keegan would be with us, but was hoping for a good meeting with the doctor. The visit was off to a rough (and annoying) start when we weren't even called back until 2:45, forty-five minutes past our original appointment time. I can overlook it, I totally understand that doctors get busy and behind schedule, fine. Once called back, Addy was weighed, her height was measured, and we were ushered into a room where a nurse took a less than thorough history. More waiting. Then, a social worker came in on behalf of the doctor to ask more questions, all the while, the minutes ticking by along with my patience. More questions answered, more waiting. An orthopedic fellow, working with the specialist (the one we had been waiting over an hour to see) came in to ask the exact same questions again, and take a quick look at Addy's arm. We were then sent down to radiology where I had to leave Keegan sitting in the next room and physically restrain Addy in order for the tech to get a decent picture. Then another trip back to the exam room where the fellow returned to show us Addy's X-ray. "Yep, no wrist bones. She will never have any motion there." I knew this, I wasn't expecting any new developments, but some bed side manner would have been nice.
Finally, we were ushered into another room where an older gentleman sat on a computer clicking away as we walked into the room. Without introducing himself he asked which child was there to see him. Really? You haven't even read the name on the chart? My blood was reaching the boiling point. As if waiting two hours to see this man wasn't infuriating enough, now he didn't know which kid was there to see him. Maybe the one missing her forearm and hand...maybe? UGH. I faked a smile and introduced Addy who was about as fed up as I was. He then began explaining to me that Addy's limb difference was not an amputation but was symbrachydactyly (still considered a congenital amputation, but because she has tiny nubbins, it's not typical of an amputation). I'm guessing the explanation was more for the benefit of the fellow working with him than me, but still. He asked me to sit Addy on my lap so he could examine her arm, which he did in about two seconds. Then this happened.
Doctor: "Have you seen a prosthetic specialist?"
Me: "No, my husband and I have chosen not to pursue any prosthetics as of right now."
Doctor: "You really need to see a prosthetic specialist to see if there's anything she would benefit from."
Me: "Like I said, we aren't really interested in pursuing a prosthetic. We feel that because the amputation is below the elbow and she has such good range of motion and is able to use her arm, we don't want to hinder her progress.
Doctor: "Doctor ______ is the prosthetic specialist here, he has a lab here on campus and is available for appointments on Fridays. We will get you on the schedule."
I then received a ten minute long explanation of the different types of prosthetics, the different ends of prosthetics, the benefits of a grabber versus a hand, and the different ways in which a prosthetic would be worn.
At this point, it was all I could do to keep it together. I was on the verge of tears and didn't want to make a complete ass out of myself in front of these men, who clearly didn't give a flying rat's ass whether or not they were upsetting me. I took the piece of paper I was handed and headed to the reception area clinging to the shreds of sanity I had left. At the reception area, I handed the woman the paper, expecting her to tell me that my insurance didn't need a co-pay and that we were all set to go. Instead:
"Okay, so you need an appointment with Doctor ________ in prosthetics. He's here on Fridays, I have September 19th or 26th available, what works best for you?"
As politely as I could muster, I repeated myself yet again, explaining that we were not interested in pursuing a prosthetic at this time and that if we were, I would call and schedule an appointment. I grabbed the card she handed me, picked up Keegan, and pushed the stroller as fast as I could out the front doors of the hospital. By the time I hit the parking lot and made it to the car, I had tears streaming down my face and was gasping for air trying to catch my breath.
Let me clarify for anyone who thinks I am being ridiculous: I am not upset at the thought of Addy needing a prosthetic. I know in my heart of hearts that she could live her entire life without ever using one, and again, if ever she voices the need or want for one...she will have the best prosthetic available. What cut me to my core was feeling like I had somehow made a wrong decision in NOT pursuing a prosthetic for Addy. I felt like I had done something wrong. No, the doctor or staff didn't come out and say that I had chosen the wrong path for my daughter, but that's what it felt like. That our decision was wrong, that we weren't acting in the best interests of our daughter. Maybe the doctor simply wanted us to have more information, maybe I wasn't clear in the fact that I had done my research. Maybe it was the same speech he gave to every parent he saw that had a child with a limb difference, and maybe I took it too personally. But in that room, feeling as if my voice wasn't being heard, it felt horrifically personal.
My voice is all that Addy has. I am her voice. I am her advocate, and I am doing the best that I can with the information that I have. My husband and I weigh our options before making any decision, and none have been made lightly or easily. We are just now into our second year with Addy's limb difference, and every family dealing with a limb different child takes their own journey. We have met families that have been through countless surgeries, others that haven't had any. Some families don't choose to do therapy, while others do. I was lucky enough to sit down with Jen Lee Reeves of Born Just Right and discuss her daughter Jordan's journey with her helper arms and the preventative therapy she does to keep her strong enough to operate her helper arm. I am by no means discounting the use of prosthetics, I know the benefits they hold for many children and adults, I have seen them first hand (no pun intended). I am simply saying that our choice has been not to take that path yet, and feeling as though our decision to not travel that path was the wrong one, was hurtful.
I know that we are doing everything in our power to make sure that Addy is a strong, capable, amazing little girl. We are her biggest fans, her cheerleaders, and her advocate until she is able to be her own. I will continue to stand up for what we believe to be in the best interests of Addy. I will continue to research, pour over articles, and discuss different options for her. I will never stop. I will never allow anyone to make me feel as though I am not acting in the best interests of my daughter ever again. Today was a challenge, and I learned a lot from the experience. Hopefully I'll never be put in that situation again...but I think that's wishful thinking.
