Tuesday, February 1, 2011

Scottish Rite

Well Justin and I both said as we left Scottish Rite that we wished we had a camera to capture the entire scene. About 30 doctors sat around a long conference table and looked across the room as a few other doctors asked questions and passed Maggie around and examined her. Her doctor led the discussion and I felt like I was in an oral exam as he fired off questions at me: Did you have a complicated pregnancy? How many months did she do therapy? Why did she get a g-tube? Have her eyes been checked by an opthamologist? Thankfully, I've repeated Maggie's medical history so many times it is forever ingrained in my head. Anyway, it really was so cool and I am so thankful for such an amazing opportunity.

So this was their consensus:

In all the years of experience in that room, no one had seen anything like Maggie's case. They concluded that it is not a muscular issue because her head can straighten out when forced. Rather, it is a positional issue that they think is directly related to not having any fluid in the womb and not being able to move for 15 weeks (thank you- I've been saying this all along!). Her brain is telling her that this is a normal position, when it's not. And the  issue is, how do you re-train the brain? We have done a year of therapy with no results.

Our next step is to have her surgery on her spinal cord to release the tension on February 18th. He doesn't want to do anything drastic before then. He said there could be a small chance that the pressure on her spinal cord may be affecting her neck, although he doubts it. But we're going to see how the surgery goes and how she recovers and go from there. In the meantime, we are going to be diligent about making her wear her brace as much as possible. We'll also talk to the PMR doctor tomorrow about botox after her surgery, but again this doctor is not convinced it will work since he doesn't think it's a muscular issue.

So the plan is to make her wear the brace as much as possible to teach her what's normal. But he said the brace is hard because when she cries, of course as a mother I want to take it off. So eventually we might have to do something more permanent like a halo. Which is when they basically screw a halo-looking thing into her skull to make it straight (often used after severe injuries). This upsets me because I don't want Maggie to suffer any more. And the fact that he said she might wear a halo for a year and we take it off and her neck still go back to being tilted. That really would be awful!

I am praying that God will take this into His hands. That he will spare her of any more torture devices and that the way to cure her is much easier than the halo. Praying for a good surgery and that it will help ease whatever pain or discomfort she has from having her neck straight.

Out of desperation today, I ordered a soft neck collar for babies off the Internet. Maybe just wearing that will teach her what's normal. Who knows? I am not a doctor, but maybe, just maybe the solution is a lot easier than we think....


  1. Oh Lee my heart is breaking for you! Saying my prayers for a successful surgery and please let us know what we can do!

  2. Just wanted you to know we are praying for you and Maggie. Love you!

  3. I haven't stopped praying...Lord, please bring ANSWERS!!