The next morning, we got to the Children's hospital for another MRI. This is number 3 for Kinley since November. Seattle has this process down pat. We checked into the hospital at 7:45 and by 8:20 Kinley was sound asleep ready for them to place her IV. The MRI took about an hour and then we were able to see her and help her wake up.
A few hours later we had our appointment with the neurosurgeon. The news we received was not what we expected. Kinley's cerebellum has shrunk back up into her skull, so that is good. It does not look to be impeding the flow of the CSF any more. However, her syrinx is still there, and just as big. This is so discouraging since we were hoping that it had completely collapsed. Kinley has a huge syrinx, that goes along her whole spine. So we really needed it to start to shrink. Dr. E was upset it had not changed. He said its possible it still just needs more time. Maybe a year or even longer.
So, not the news we wanted to hear. After all Kinley has been through, we wanted to be able to tell her the surgery did amazing things, and that she was going to be all good. But, now I sit here wondering if my baby is doomed for a life being in and out of the hospital. Is she going to develop pain and never be able to function normally? Will she be able to go to college, and get a degree in whatever her heart desires? So many unknowns for her future.
As we are still processing the fact that we got crappy news, we came home and got to celebrate Kinley finishing up kindergarten. Despite all she has gone through this, she has learned so much in school. She is able to read like a champ, and she has made huge strides in math. And she has made the cutest, sweetest little friendships.
We will be following up with Dr. E in 6 months to do another MRI and hopefully we will see huge improvements then. And the best part is we will be able to get all of it done in Missoula! So we don't have to travel all the way to Seattle for our check ups!
Thank you for loving our baby girl and for always praying for her and sending good vibes her way. She needs them so badly. We all do!