A Mystery of Faith Experience

Many of my friends and family have heard of my recent experience with Sarah Kate. Because it's quite lengthy, I'll pass on posting the narrative here. However, on Friday, November 18, Sarah Kate and I, along with my dear friend, Colleen Pearson, experienced the mystery of faith (thank you to Colleen for giving me those words). As a result (and I will be happy to share with you the details of our experience), I have begun to pray that God will heal Sarah Kate. I am no longer content with the prayers of "be with her" or for a "good outcome."

If I believe that God can work miracles - why would I not believe that he will work them in my presence?

I do not know what path God has chosen for Sarah Kate, or if he will choose to heal her. However, I do know that His desire is for me to ask for her healing and to have faith in His mighty power.

"Ask and it will be given to you; seek and you will find; knock and the door will be opened to you." - Matthew 7:7

The PT Evaluation

Sarah Kate and I went for the pre-op evaluation by the physical therapy group on November 7. It was 2+ hours of answering questions, stretching and measuring her, watching her do certain tasks, and a video of her movement. The purpose, as I understand it, is to give the therapists a baseline to start from following the surgery. They also provided us with pre-surgery stretching exercises to do, information about frequency and location of the post-op therapy, and a phone number for a possible free apartment. While we were there, they also showed me some video footage of an actual SDR procedure and several children pre- and post-op.

After watching and working with Sarah Kate, they told me what to expect in terms of functional gains after the surgery. The expectation is that she will be able to walk independently after the surgery, although she may still need quad canes for what they termed "community ambulation." In layman's terms, that means that she will be able to walk around the house, classroom, etc., without assistance, but will need help for longer distances, uneven surfaces, etc. They were quick to point out, however, that most children not only meet, but actually exceed the expectation given for them.

One other tidbit - although we were initially told that the post-op therapy would last for about a year, they have a new intensive exercise program that has been recently introduced. They told me that most likely Sarah Kate would be recommended for the program. Instead of the shorter, daily therapy sessions for a year, she would have daily therapy for 4-6 months, at which time she would take part in a program that would be 4 hours/day for 3 weeks and would incorporate the Adeli suit as part of the program, a very exciting possibility. After the intensive therapy program, the daily PT sessions would no longer be required, and instead Sarah Kate could participate in "regular" activities instead (such as dance, gymnastics, etc). We are encouraged by the possibility!