Emmie had her appointment today with Shriner’s Hospital for a second opinion. First of all, I have to say that they definitely lived up to their reputation. They were great with Emmie and open and honest with all of us.
Here’s the good, the bad, and the ugly of what we learned.
The orthopedic doctor fully agreed with the current treatment for Emmie’s scoliosis and the amount of time between appointments. We don’t want to expose her to any more radiation than is absolutely necessary and there really isn’t much that would change in her course of treatment. It was great to hear a doctor affirm that she is getting just what she needs at CHOA.
We learned today that Emmie is not a good candidate for casting. In fact,the orthopedic doctor stated simply that this can not happen because of her spinal fusion in her cervical spine. Casting requires traction which would tax the fusion and would cause severe nerve damage. This is a bad because casting has been found to help greatly in idiopathic scoliosis. We also got confirmation that because Emmie has NF, her scoliosis is not considered idiopathic. The research we have done has shown that casting for progressive scoliosis can lead to a great improvement and delay spinal surgery by a lot. So,no casting removes the only other treatment for progressive scoliosis.
That leads us to “the ugly.” He basically told us what no one else has…that we are going to be bracing and bracing and bracing until the spine gets bad enough to need surgical intervention (which we hope is years away). We knew she would need surgery but until we heard a doctor say that, then we could just be in denial. As I’ve said many times, NF bones are very weird and do not act like normal spines even “normal” scoliosis spines. Add to that Emmie’s spine history…well, we know the spine isn’t going to correct. We also know it will get worse. It’s just a matter of getting her as close to maturity as possible before we have to do surgical intervention. So, the brace, as we know, is there to slow the progression of the curve as much as possible.
Like I said, we were grateful for the open honesty the doctor provided and again, the affirmation that she is getting the best care needed.
We’re here again…the ol’ Wait and Watch routine. We’re adding in prayer as well. Please join with us in praying that the spine does not progress fast and that we can avoid surgery for years to come. I hate she has to live in a brace. She’s worn a brace most of her life. It’s what she knows and it barely phases her. But it is so hard to watch her deal with these crazy restrictions and challenges that many three year olds never have to deal with. Please continue to pray she can continue tolerating the brace with her dynamite warrior attitude as she has so far! Please pray for strength as we seek to glorify God through all that our super hero encounters.
As a treat, we bundled up and visited beautiful Falls Park at the Reedy in downtown Greenville.