Scoliosis Update September 2016

We went in to see Dr. Newton again on September 6th. I have been meaning to post about that visit since then, but it just felt too hard to do. Apparently denial doesn't make things go away so here I am.

To catch up, Kate did have a pulmonary function test in May. It showed that she is breathing at 60% functionality. Between that and the two medications for her heart, one slows her heart rate, the other lowers blood pressure, she is one easily tired kiddo. We spent the summer just doing our thing. Kate can't sit on the ground for any length of time, or sleep laying on her back very well. But other than that we had an uneventful summer.

At our doctor visit on the 6th they took more x-rays of Kate's back. The curvature of her spine has gotten significantly worse. She was at a 44 last spring and is now at a 54. You do surgery at 50.

Kate is super excited! She gets out of PE for at least 6 months. Never seen a happier girl. She is literally counting down the days left of school and of PE. She can't ride any crazy rides at Disneyland for at least 6 months also. Definitely going to get a day or two in there before surgery.

Surgery is scheduled for October 17th. She will have an MRI of her back and another pulmonary function test before the surgery. Straight rod in her back. This will affect her hips, put more pressure on them. So the hip surgery we were thinking that would happen when she was in her 50's, might happen closer to her 30's. The areas above and below the rod will still be susceptible to issues due to her collagen being so wonderful. Her breathing should improve somewhat but her concave chest will at some point need to be addressed. One problem at a time, right?  Possibly some time in the ICU depending on her heart, then around 5 days in the hospital. 3-4 weeks at home afterwards depending on how she does. No brace, no physical therapy at this point.

This is what her back looks like now. She rarely complains of pain, unbelievable. But when she does we know it's serious. You can't tell by looking at her, but I can feel it when I run my hand down her back.

Lots to do before the 17th. Updates to follow. Prayers welcome.