Yesterday was the big appointments day. I ended up not taking all the kids to the first appointment at 8am so Gracie and I got up, and out the door at 6:50. Once we got there, the doctor had ordered xrays. When the tech gave her a gown to change into, I asked why since we were checking on her leg and she was wearing a little cotton dress. He said the doctor ordered xrays of her spine. I totally forgot about us talking about doing some spine xrays the last time we met with him. She did fine with the xrays but her being a worrier, you could tell she was a little scared. We had about a 45 minute wait before we could see the doctor but it was fine since we never get to be alone much and she is so well behaved. When he pulled up the xrays without him saying anything, I knew there was a big problem. He officially diagnosed Gracie with scoliosis. She will have a MRI on the 13th which she has to be put to sleep for. They will check to make sure the spinal cord isn't tethered. If it is he will call me right away but if it's not, we will be back in December to see if she has to go in a brace. Her leg that had the 6 hour surgery also has to have surgery again but he has referred us to a colleague he does surgeries with a lot in plastic surgery because she will need a skin graft on the back of her knee.
I have said it since she was a itty bitty baby and I still feel this way, if nothing else, I hope she never loses that God given smile. I hope this cruel world doesn't take that from her and I hope the diagnosis don't as well.
The worse part right now that affects her is her not being able to participate in activities such as gymnastics, dance, etc. She wants nothing more than to be right along Madi dancing her little heart out. I was again advised against such activities yesterday.
We headed home to get the rest of the family. We went to lunch and then left Ricky so he could go to work and we could go to the other two appointments. It rained so hard on the way back to the medical center that there were times I couldn't even see to drive but luckily we made it safe and sound.
At the Developmental Pediatrician, I received more bad news but it's really not worth going into. We didn't leave Texas Children's until 5:30pm so we were in rush hour traffic on the way home. We met Ricky for dinner and got home at 8pm.
No matter what diagnosis shatters our picture of what we want for the future, HOPE picks up those pieces and FAITH gives us the strength to adapt. I am thankful because I know how lucky we are even if the mountain we climb is more challenging. We are BL3SS3ED beyond measure!
Of course being human, I want to kick and scream and ask why us. We have been through so much it's exhausting. What has kept me going was foolishly thinking once we get to this age or that then we would be "normal" and one day forget what the inside of Texas Children's looks like. But facts are facts and I have a son who is legally blind with major brain issues and I have a daughter with major skeletal issues not to mention all the other things they both face. It's all something I take complete responsibility for, I feel like it's a personal attack. It's a huge weight I carry every single day of my life for the past 4 years.
Anyway, Gracie could use some prayers. I'll update soon.
Krista
