Multiple times at camp Bella mentioned "trying a hook". Why I asked her? What can you do with it that you can't do with what you already have?
"I could pick things up, I could ride a bike, I could do lots of things with it"
"Well why don't you want one with fingers? Why a hook?"
"Because then I could REALLY use it for a lot of things. Please mom, can we make an appointment?"
How can you say no to a child that's asking politely for something she feels will make her life easier? Something that each of us take advantage of every single day... So, I called our pediatrician for a referral to Hanger Prosthetic clinic. Yes there's a Shriner's in Chicago, however that means a 2 hour drive each way for each appointment. Then that means driving there for occupational therapy appointments to learn how to properly utilize the prosthetic. Why not give it a try locally first? If we need to go to Shriner's, we will. Well the conversation with the nurse at the office was interesting to say the least.
"Hi my name is Sarah and I'm Bella Zizzo's mom. I'd like a referral to Hanger Prosthetic clinic in order to get my daughter a prosthetic hand."
"Well I see here in her chart she doesn't have a hand" says the nurse at the other end of the line.
"Yeah that's why I'm calling, I'd like a referral for a prosthetic please."
"So she doesn't have any fingers?"
"Yes, she has a shorter left forearm and no fingers on her left hand."
"Oh so someplace can make her one?"
"well a prosthetic one, not a real one"
"Like fingers or a hand?"
"I mean they have to fit her first and then we'll go from there to determine what would be best for her and what she could utilize the most. She'd like to do monkey bars and ride a bike a little easier and not have pain in her left hand when she tries to do floor activities"
"Oh so like a mold?"
"Well yes, that's the first step in making a prosthetic is evaluating her current situation and then determining what would best meet her needs"
"So like she could use it for stuff? Not anything cosmetic?"
"No that's the whole point, she's happy with the way she looks and so are we... She's expressed interest in doing some things that a prosthetic would make easier for her to do. So it's nothing cosmetic at all. It's functional"
"So she could use it?"
"Yeah that's kind of the point. Do I need to speak to her doctor? We've been seeing her since she was born so she knows her well."
"Oh no, that's okay. I'll send it over to her."
"That would be great, please tell her to call me if there's any questions."
*Insert palm to forehead* Is this real life? Was this nurse for real? I mean really... Do people in this day and age really not know what a prosthetic is or how they work?
So the thing with Camp No Limits is that we are exposed to a LOT of different options. A ton! I mean there are "basketball hands" and "mushroom hands" and "hook hands" and "myo hands"... the list really goes on and on. Bella has mentioned having a hook hand after meeting Gary Wetzel, Carrie Davis and Keagan, all of who are very successful prosthetic users. Success involves having occupational therapy to show you how to utilize this new "tool". You can't just put it on and do nothing or it doesn't serve the purpose of being useful. You have to learn to utilize it properly in order to obtain the full benefit.
While she is successful at so many things in life, she finds certain tasks difficult. We all find certain tasks difficult. If she expresses interest in something so many of us already have and she doesn't, why not encourage her and support her? This is truly why I believe that she is ours. We were chosen to be hers because she's just right for us. We will support, encourage and empower her in any way that we can. Maybe we'll get there and she'll change her mind. Maybe she won't, maybe she'll find a something that helps make one thing in her life a little easier. Either way, we'll be there by her side for each step of the way. Empower, supporting, encouraging and educating!