First, I need to apologize – I have been a blog slacker for sure! I think the holidays are typically a tough time for me and either I don’t feel like putting my feelings out there or can’t find the time to do so. However, I know you all love and support us through this crazy life so I wanted to update you on our latest “hurdle” with Brooklyn. Scoliosis.
We have known that Brooklyn had scoliosis for about two years now – that is not the surprise. The issue is that in 18 months it has increased from 15 to almost 40 and that stinks. It has prompted her Orthopedic team to suggest bracing (assuming she will tolerate it). The goal of course to keep the curve from progressing too quickly, to allow us to put off spinal fusion surgery for a long as possible. (Because, well, that is a big scary surgery)
So, Brooklyn’s back was cast in order to make a mold that will be used for her brace. Her face pretty much sums up the process. She was so brave and so strong – as if any of us expected anything less from her. (ummmm, and why did none of you warn me about the bracing cast process, yikes!)
I am not going to lie – this is one of those moments that I have been absolutely dreading. I think I did a bang up job hiding my fear and sadness from Brooklyn throughout the appointments – I had to right? I mean I am her mom – I have to keep my game face on even though inside I was so sad, and really really mad at Rett Syndrome and yet something else that Brooklyn is going to have to deal with, it stinks. I am mad and I am not the one who is going to have to wear the darn thing.
Then of course there is insurance – and all the pain that comes along with getting it approved and ordered. I have lost count but I think I am up to SEVEN separate phone calls so far regarding this stupid brace and it has still not been approved and/or ordered. It stinks to jump through so many hoops for an item you hate the very thought of, an item that makes you want to cry just thinking about.
SO for now we wait, (and return countless emails and phone calls) but it looks like 2016 will start out with a brace for the strongest, bravest, most amazing girl I know.