Friday, December 23, 2011

Brooklyn's Hip

We met with an Orthopedic Surgery team yesterday at Chicago's Shriner's Children's Hospital. First, I have to say I LOVE that place and everyone there - they were amazing with Brooklyn (and me.)
We had suspected that her hip was "out" we were not sure how much or how bad the situation was. It had been slowly working its way out over the past year or two - up until recently we were recommend to just wait.
However over the past 6-9 months it has seemed to gotten worse. Brooklyn stopped wanting to bear weight, she stopped sitting up on her own - she leans to the right pretty badly to take the weight off her left hip. We knew something needed to be done.
We were blessed to be introduced to the Shriner's here locally in Fort Wayne (thanks to Boston's OT!) who connected us with the team in Chicago, who we met yesterday.
We met with the doctor and his team, had xrays done and also met with both a physical therapist and a occupational therapist - each of whom were AMAZING!
As you can tell from the xray - her hip is entirely out of socket and has been for awhile by looking at the wearing of the "socket" HOWEVER - we are not too late - their plan is to do a little reconstruction on the pelvis - using bone from her femur - which will allow for the "ball" to go back into place.
They will be doing some work with her muscles as well while they are in there. To be honest I still have a few more questions regarding the surgery but realize, now that I am home, I was a little overwhelmed at the time and did not think of them all. Which is fine - we have a little while. I need to get clearance letters from Brooklyn's neurologist, gastroenterologist, pulminologist, an primary care doc. THEN surgery will be scheduled. Two weeks prior to surgery we will go over for labs and at that time we will be able to sit down once again with the team to go over any questions. It was also recommend to be by another rett mom that while I was there I should donate blood so that they can use my blood if needed for transfusion. (thank you for that suggestion) I wish Chicago was a bit closer - three hours and a time change for us, but I truly feel that she is in great hands there.
I have had lots of "newer" rett moms ask me HOW? WHY? Can we avoid this with our girls? I am by NO MEANS a doctor but for Brooklyn I do believe a lot of it has to do with the fact that she was never an independent walker - there was never a ton of weight bearing - muscle building going on with her. That combined with the fact that I believe some girls with Rett Syndrome are prone to certain things - it was probably going to happen anyway.
The GREAT news is that despite all of her leaning to the right - there is currently no curve - no scoliosis! Which I was super excited about! Her leaning is all muscle related so far - but also another reason to get the hips fixed!
Rett Syndrome has thrown us quite a few curve balls this year for sure but I will say it again - we will BEAT THIS - Brooklyn has Rett Syndrome - it DOES NOT HAVE HER!


JDogg said...

Lots of hugs! I know how you are feeling with the surgery coming up - We're still getting back into the swing of things following Jordan's scoliosis. You and Brooklyn will do well, and she's a lucky girl to have you keeping after her like this. - Jamieson

Erica said...

OUCH!!!that looks so painful!! Im so happy to hear they can help make it better, though and that she has no scoliosis! thats great news. as always sending big hugs. how long do you have to wait to get this started?

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