ivi grace update 3

This past Thursday, we took Ivi Grace for our second visit with the cranio/facial surgeon. As expected, the CT scan confirmed that Ivi Grace does indeed have Craniosynostosis. In his words, she has the tougher kind to correct but feels confident about her prognosis. Although a definite date for her surgery has not been determined, it will most likely be when Ivi Grace is between eight to ten months of age. She just turned five months a few days ago.

  Bringing her up right. Calm down folks...the wrapper was still on.

Bringing her up right. Calm down folks...the wrapper was still on.

In the meantime, Ivi Grace will have to wear a DOC Band (baby helmet, see links below) for a few months. This will, hopefully, reshape the back of her head which will help her when it comes time for surgery. We’ll go to Charlotte to get her head measured and the band made, and will have to travel back every week to get it refitted. She’ll have to wear the band 23 hours a day. I guess they give us enough time to give her a bath without it thankfully.

Also, we are still doing therapy for the Torticollis (see below) and although she has improved, we have a long way to go. We are experimenting with some different techniques.

There isn’t really anything else to report at the moment, except for me to say again how much your kindness, prayers and support mean to us. Some specific prayer needs are:

1. That God will heal Ivi Grace through these doctors and surgery.

2. That Christi and I don’t go crazy. We are trusting God and our faith is stretching.

3. That the financial resources will come into place.

4. That Ivi Grace’s therapy, helmet and surgery will all be at the right time and do what’s needed.

Thank you for caring enough to check in. We love you all.

Links:
DOC Band
Craniosynostosis
Torticollis