Bracing??..Really??

With each step forward we take the more sure we are of our decision to cast. Today was our appointment with Yanke Bionics, a company that makes prosthetics and orthotics. And while they do wonderful prosthetics for people who have lost limbs...doing a back brace for a child with scoliosis is, in my opinion, a big waste of time. We left there thinking, how in the world is that supposed to help. I have read so many stories over this last week of families who didn't know about casting and only did the back brace, and so far, I haven't found one family that the brace has completely stopped the progression of scoliosis. Who's children grew up straight and tall without the help of a dangerous surgery, a surgery that often times, doesn't even work.

So onto how the process of getting fitted for a brace worked. I wasn't sure what to expect but this wasn't it. I took pictures to document and to help everyone understand the processes we will be going through. When we got there, we stripped her down to her diaper and they measured her. Just around her body at different levels; collar bone, chest, belly, ect..Then they put this cheese cloth like body suit on her. Now, I have never had a broken bone so I am not familiar with how they cast you, but Michael said it was a lot like having an arm or foot cast. They soaked long strips of clothe in plaster and spread it out on the table, then we laid her down on top of that and they laid more strips of plaster all over her. Let me tell ya, she was NOT happy. It was cold and I am sure scary having 3 strange men hold you down. Then they just held the plaster in close to her body until it dried, which took 3 or 4 minutes. Minutes of ear piercing screams and huge crocodile tears. Nothing would console her. She was mad. After it dried, they cut it off of her so they could send the hardened cast and x-rays out to have the brace made. Delaney was covered in plaster, so we had to wash her down before we could dress her to go home. She was worn out and fell asleep immediately..poor girl. So now that part is done, we just wait for the brace which takes about 1 to 2 weeks. Hopefully we just paid for a brace that she won't ever even wear. Hopefully she will be cast before that silly brace even comes in.

The part that gets me is they say the brace is to help her sit straight and keep the spine from curving anymore than it already has. But I have read story after story that totally contradicts that. So many children it didn't help. I understand that this is so rare that doctors only know to follow a procedure that is standard, but come on...we found this better alternative treatment with a few clicks of the mouse. Why are doctors to proud to say, let's look into newer better treatments. Let's see if there is anything exciting happening in this area, before they dismiss you with little hope of your child recovering unscathed. How many children have to go through their lives with pain, physical scars, emotional scars, embarrassment, and years of treatments that don't fix the problem. It makes me so sad to think of all those children. The forgotten children. All children with rare and debilitating diseases. We have to do better for them.