Before and after x-rays. August 2009 was the initial diagnosis. March 2011 is taken in her brace. All the dots and rings are the metal hardware on her brace.
And so the last cast goes in the trash...
The story is actually quite insightful and inspiring. When we arrived at the brace shop to remove Makenna's cast and be fitted for the brace, we were apprehensive. Mind you, we had removed every cast ourselves - at home. I created an entire "story" for how the cast was removed and how the Magic Scissors would arrive. It was a production. A special event. All of that was taken away as we moved forward to more freedom. My story... it just didn't work for this. They needed her to move immediately from the cast to the brace. Dr. S couldn't sent the magic scissors, we needed to go there. I told her that they wanted to see her in her "hug machine" because she was such a trooper. If I had really been thinking, I would have told her that they needed to see it because she had some magical power in hers and they wanted to pass it to the other children... but, alas, I wasn't quite on my A game!
Our day was set to go like this...
Brace shop at 11:00. Shriner's appointment at 12:30. There were 5 other familes with appointments at Shriner's that day. It was going to take careful calculations and planning to cross paths with each of them. Inthe end, we met only one family. I have faith that our paths will eventually cross with the others...
When we arrived at the brace shop, I was prepared for a long visit. I had talked to other moms who had shared similar stories. The visit was not short. I walked in with the intent on making the visit as short as possible. After all, I was trying to catch as many families at Shriner's as possible :) I would not ask frivolous questions and I would protest long waits.
But here's what really happened. The orthotist came in the room. There was a pair of "scissors" on the counter. Dave jokingly said " Pass me those scissors and I can have this cast off in a heartbeat". The orthotist replied with "You can't cut through that thing... I was there when they put it on.". Up until this point, I had no idea there was an orthotist in the OR when the cast was applied. So, now my interest is peaked :)
I stand and shake his hand as I introduce myself. "I'm sorry, did you say you are in the OR?"
Apparently, there are two orthotist at the Chicago brace company who alternate with duty in the OR at Shriner's for the serial casting. They have worked hand in hand with Dr Sturm from the onset of casting and have a vested interest in it.
This man is willing to give me more information than I could ever have hoped for. When I start asking questions, he leads us back into the "workshop" ` which is exactily that, plywood subfloors, workbenches, messy tools, rolls of plastic... and a new casting frame. I knew what it was when I saw it. I've seen pictures before. This man has bought in full board, believes in the treatment and is helping to make it available to others!
So, clearly my visit is not going to go so fast, but it is ALL my fault!!! When he brings Makenna's brace and I ask questions about the type of brace... Wilmingtion vs. Boston, etc... They are alll TLSO's, but what is the difference. Makenna is getting a Willimington. He takes the time to go back and get a Boston brace (or "baby boston" as he called it, since it was for a toddler), and show me the differences in the braces. Makenna's brace has no support for correction. She doesn't need it - her curve is close to zero, so it's not neccesary. As we are talking, he allows me to ask questions about CAD/CAM application in brace molding, and whether or not he thinks it's possilbe to make a brace that corrects the curve, and I realize that he has positive confirmed the fact that you can correct with a brace. It is possible to make a brace that counteracts the forces of nature.... but compliance is the biggest issue. Once the child has reached a goal curve of under 10 degrees, then you can relatively control gravity and nature with compliance. But before that stability is attained...it's just not prudent.
So, we are in the brace. We still have hurdles, and there are many changes that I didn't expect. But, I am so thankful that I found the castng treatment and we were able to gain over 13 degrees in correction!!!
We leave tomorrow for Chicago. I have really mixed emotions about this trip... this step.
I am so excited and relieved that the casting treatment has had wonderful results for Makenna. Not only does her case back up the research, but it defies it as well. Makenna was past the so-called "window of opportunity" for casting to be optimally effective. She has an underlying condition causing the scoliosis, which also does not have favorable results in the data. All of these things and she is still shining like a Rock Star! I feel incredibly blessed. Incredibly lucky.
I feel so comfortable and safe with her in the cast. We are used to it. It's become "normal". We have a system and it works for us. We have adapted beautifully to our new 'normal'. I wrote before about how worried I am about compliance...mostly from me. I just worry that it will be too easy to say "no, it's OK, you don't have to wear it right now."... So, I keep asking myself if we are really ready for this step. Is it really time?
And, as if she could read my mind, Makenna asks a question. The first time this question has ever remotely come out of her mouth was today... we've been casting for almost a year and Makenna is now 3-1/2. "Why did the Doctor put a hug machine on me?" And so I had to answer. I told her basically the same thing I told Abby at the beginning. I let her feel my spine. I let her feel Abby's spine. We talked about how your spine hold you up and makes you stand tall and straight. And then I told her that her spine kind of had a mind of it's own and was trying to grow all curvy! If we let it do that, she wouldn't be able to stand tall and staight. We were just teaching her spine how to stand up tall.
Almost as quickly as she reminded me it was time, she reminded me that she was still 3.... she asked me, "What would happen if I didn't have my hug machine?" And when I tried to give the logically answer about growing all lop-sided... she chimed in "No, Silly. If I didn't have my hug machine, I would take a bath!!!"
I LOVE MY KID!!!!!