I have a few basic pieces of advice I like to pass on to young parents. One of the most basic is - listen to your gut. No one - no matter what their training or diplomas say, know your child better than you do. You, only you, as parents are the experts when it comes to your kids.
Today Shannie had an arthrogram and a steroid injection into her left hip. She has had two hip surgeries called derotational osteotomy on the hip and once on her right side. She has what is called a wind swept left hip - both her legs sweep to the right. It causes her left hip to pull out of it's socket and yes, it's as painful as it sounds.
Today the arthrogram showed that her left hip is once again pulling out. It's not completely dislocated, but it is sometimes slipping out, which is why it is inflamed and causing pain. When discussing how to avoid further inflaming the hip, we asked about the use of the stander. A stander is something she is strapped into while laying down and then it is put into a standing position. Shannie has never been a fan and therefore neither have we.
From our experience physical therapists are huge fans of standers. Our guts have always said - not worth the time, energy and discomfort that Shannie experiences while in them. Today we heard the same response from our favorite surgeon. His reasoning matched our own - a chair dependent person has no need to spend time in the stander or having range of motion (ROM), which is basically stretching her muscles, on the troublesome hip.
Now, in spite of the fact my gut had told me we were right to avoid both the stander and range of motion here at home the insistence of the professionals made me doubt. We refused to have a stander here and I'm glad we stuck to that decision. Today a top specialist surgeon confirmed that our guts had again, not steered us wrong and we now have a prescription in hand telling the powers that be at school to cease and desist all stander and ROM until further notice, which in his words would be till he is no longer in practice. To that I say - Hallelujah!
If the steroid injections fail to stave off the pain, the surgeon mentioned another possible surgical option. It's called the femoral head osteotomy (FHO). It is basically the removal of the femoral head and then, as I understand it, muscle is pulled over the end of the femur instead. Our surgeon has only done this surgery 15 times in his 20 years. It is more often used by veterinarians. Of course, we will be praying Shannie is not his 16th and that somehow the injections, no stander or range of motion will somehow be enough, but as is so often the case with our sweet Shannie-Boo, the easy road does not seem to be the path she gets to take.
We saw a young couple with a daughter who looked so much like our Shannie did when she was about 3 yrs. old sitting in the waiting room post procedure of some sort and our hearts broke for them. We know something of the path they will be on and how difficult it can be. The stress and strain on families and marriages of couples with special needs children is immense. The divorce rate is higher than for typical families - at least twice the rate.
Shannie brings us much joy as I'm sure their sweet daughter does, but it can be a hard road, especially for a young family. In our case, it's brought us even closer together. When it comes to our Shannie - don't even think about messing with our girl. We are a force of nature when we are in defense of her and I am so very grateful to have Mark to lean on and sometimes hold up when times are tough. It would be a very lonely road to travel alone.