Patience for Grace

Thursday, March 8, 2018

Spinal fusion Surgery Follow Up Post

Grace's surgery information and first month follow up details were put in the private Facebook group because I couldn't figure out how to write posts on my mobile device for this website.
Grace's surgery and recovery went well. We are thrilled with the result. Grace is doing so much better. The picture is after her 1-month follow up on November 30. 2017 (right) and last July 2017(left). The difference has been huge. She doesn't hurt anymore. She's happy so much more now. Grace is doing PT to rebuild her stamina for sitting and a bit of standing with help plus all her "regular scheduled programming." She will have a 6-month follow up in April. Our fingers are crossed that she gets cleared to ride her horse again!

Thursday, October 12, 2017

Spinal Fusion Surgery Update

Grace will have spinal fusion surgery on October 30, 2017.
They will basically fuse her whole spine from T2 to her pelvis. This is probably best because her scoliosis is a neuromuscular scoliosis. If only the lower part of her spine was fused, there would be a chance her spine higher up could begin to curve.
Grace will be several days in the hospital and then have several weeks of recovery at home.
I look forward to her little body not hurting anymore. Her back problems have really affected her quality of life this past year. She's amazing though, and still has plenty of happy moments.
After the healing period, Grace should be free to pursue whatever she wants, walking (in walker), toileting and especially her favorite thing to do, horseback riding.
Here is a link to how they straighten out a spine. I don't know if this is actually how they will do it for Grace. And maybe, I really don't want to know. But, I did find this interesting. SPINAL FUSION

Friday, August 25, 2017

Spinal Fusion Coming

Grace will be undergoing back surgery this fall. Her lower spine has curved so fast and so much that she is about 25 degrees past the "need for surgery" curvature.

Her orthopedic surgeon described that she will fuse Grace's lower spine with her pelvis. This will be a day surgery with 2-4 days recovery in hospital followed by 4-6 weeks recovery at home. I hope for this recovery period but know that recovery for Grace has always taken a bit longer.

When all healed, Grace will still have full mobility minus not being able to stretch forward as far. She will be able to continue the path to standing during transfers, walk in her walker, sit up properly in her wheelchair and best of all, her pain of this last year, should be alleviated.

Saturday, August 19, 2017

Grace went to camp

I picked up a happy girl from camp yesterday.

Monday, November 14, 2016

Grace communicates "hurt toes"

Tonight Grace was lying on the floor mat and I was beside her. She spent about 20 minutes or so signing to me "hurt!" She started signing "hurt" out of the blue with me. I talked to her, asking where it hurt and she lifted her toes up and touched them, while saying "/t-t-t/."

She did this over and over again.

I thought maybe she was really asking for counting but she'd push that away and re-sign "hurt." And she was holding her legs really stiff bent up with feet on the floor with her toes curled tight.

It was incredible! Unfortunately, there wasn't much I could do for her but she tried so hard to tell me what was hurting!!!

Here's a video of a little bit of our communication.

YouTube: G hurt toes