A couple of weeks ago we picked up Elle's new back brace. I am most certain that she would have rather we left it there at the clinic. She is not a fan and honestly, who would be.
The fact that it is not built for comfort aside, it really is a beautifully made brace. When I figure out how to post photos into this blog now that I am working with an iPad, I will. For now, you will just have to close your eyes and imagine it.
It was made especially for Elle by wrapping her like a mummy in liquid fiber glass soaked gauze. Once it dried, which was exceptionally fast, the mold was cut from her body. It was shipped to Boston where it would be fabricated into the hard brace she will wear daily.
We were able to choose a pattern for the brace to make it a bit more fun to wear. Naturally, we chose a butterfly design since Elle loves butterflies. If she could...she would and I know this.
Figuring out how to get the brace on Elle has been a challenge in itself. Keep in mind that elle is unable to stand unassisted and I only have 2 hands. Each day we figure out another creative way to get it on her. Fortunately, Elle is quite resilient and didn't let this stinky brace hinder her from crawling around the house. I think she is even a little faster now :-). I did notice that she refuses to sit up when wearing the brace. I felt it was too long but knew we would have to get the final word from the boss, Dr. Loveless. He confirmed what I suspected so we will have a few inches trimmed off the bottom so that she can sit up comfortably.
During our appointment with Dr. Loveless we spoke about what was to come for Elle. I knew there was more than what he had initially told me. Dr. Loveless is good about telling me things when he knows I can handle them. He is the only Dr. I would accept this from. If you knew him, you would understand. I was certainly feeling stronger during this second appointment and was ready to talk about this new journey we were about to embark on together.
The dirty truth, as he called it, is that Elle has Neuro-Muscular Scoliosis. Very different than Idiopathic Scoliosis ...the common type that kids gets, wear a brace for a few years and never have a problem again. Because Elle's nerves and muscles are too weak to hold the spine in place, it has started to curve to one side. With Neuro muscular scoliosis, the curve will not stop but will continue to worsen until one is unable to care for the child. At that point, the heart and lungs can be impacted.
Not allowing myself a weak moment, I asked him what could be done, if anything? "There is a way to correct it...I'll do a Spinal Fusion and it will not be able to continue along its natural history. Once the spine gets to a 50% curve well do the surgery." I started to feel sick in my stomach at the though of what he was saying. I knew I had to ask the next question, no matter how much I didn't want to hear it. "What percentage is she at now?" He hesitated...i think to read me and be sure I was really ready for his answer. "33" he said. And in that moment, the Dr. Loveless that I have come to know, love and trust filled in all the blanks. "Although it is a surgery, I do them all the time. It's very common and I know it is still a surgery to you. Lori, of all the problems that we could be faced with, this is the one we want...we can fix it. It's not hip, legs or feet. We're exactly where I want to be with it....ahead of the 50%. She'll wear the brace to buy us time for her to get bigger and we'll be back here in a couple of years discussing the surgery. In the meantime, you need to do what is realistic for you with this brace..." The conversation continued but thats the jest of it. Basically he was saying...help buy us time by having Elle wear the brace and leave the rest to me...trust me...I've got this.
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2 comments:
It's good that you're getting her in a brace at such an early age. Emmett got one several years ago and his scoliosis is looking so much better. His doctor is always so surprised at his progress. I guess because of his age.
I did meet a boy who is 17-- in a wheelchair-- the other day who had a spinal fusion surgery and I have to say-- I did see one obvious benefit. He doesn't need the brace and harness to hold himself straight up in his chair and keep him from falling over. I don't know how Elle does with that but that would be something to look forward to for me. His brace and harness make Emmett so hot and I know he doesn't like the tugging and wrestling it takes to get them on.
Sorry you had to get some hard news. Good luck with the brace!
Hi Sharlee!!!! I simply can not express in words how wonderful it is to receive this message from you. You were the very first person I "met" when I was searching the internet for a glimmer of hope after Elle's diagnosis all those years ago. To this day, I am still thankful for the info you were so willing to share and letting me see that there was a way. I think of you and your family often. As for the scoliosis, it really just popped up. She is checked annually for it and she has been clear and then to be at 33% just like that. I felt shattered. Elle can sit up independently...even gets herself there on her own so I just want to be sure that the brace does not hinder any of the abilities that she does have. We'll get through this, I know. How is Emmett's back overall? What is the harness for? How are his hips doing? I know that was a concern a few years ago.
Would love to hear from you when you have time. Do you still have the same email address?
Hugs to you!!, l
Lori
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