CHOP Visit

We met with Dr. Campbell and Dr. Cahill today.  Turns out, they've been talking about Abby a lot--just not filling us in!  So at least we know that the decision was thoughtfully made.  Dr. Cahill will do the surgery with Dr. Campbell assisting, since he is the one familiar with Abby's "interesting" anatomy.

She has a complicated kyphosis and there's no perfect answer.  They will use a Shilla procedure, which is a new special cover that kind of expands itself as her spine grows.  This allows them to not have to fuse as much, therefore allowing for more spinal growth.  They will fuse T1-T6 (not in the c-spine as once thought).  Even with this procedure to limit the fusion, she'll be pretty little and the fuse could constrict lung development.  But the kyphosis already is anyway, so it's a toss-up.

Not doing it would mean her kyphosis could sever her spinal cord, since it's progressed so rapidly.  That statement freaked me out a bit, so we are definitely getting this fixed!

Dr. Cahill has only done 3 Shillas because this is so new.  (It was approved in 2014).  The unknowns about long-term effects makes me nervous, but they both think this is our best shot.  You kind of have to give up the unknowns when you have a medically complex kiddo!

There's no plan B at this point, but they will come up with something else if it doesn't work.  That's the thing about Dr. Campbell. He's not going to give up on a kid!

She will wear a neck/thoracic brace for 3-6 months with no PE or physical activities for 6 months. It's going to be a tough surgery and recovery, but if all of this will keep my girl walking, we will do it!

We are thankful for answers and are really glad we went up there.  Surgery still hasn't been scheduled because they are now trying to coordinate TWO very busy surgeons' schedules.  They promised to let me know by the end of the week.

We appreciate your continued prayers.  It's a lot to digest and we are also trying to support Abby as she shares her fears.