Showing posts with label martyrdom sucks special needs help find peace. Show all posts
Showing posts with label martyrdom sucks special needs help find peace. Show all posts

Wednesday, September 2, 2009

Help Me Find Peace

Help me find Peace

For the first time I’m asking for your help in my blog. After work today, we will pack up the kids and travel to Omaha, NE. Tomorrow Samantha will do a full round of body x-rays, bone density tests, hearing, teeth, PT, OT, ortho surgeon, the whole shebang. It’s her annual trip to the Children’s Hospital in Omaha for their OI Clinic (Osteogenesis Imperfecta – brittle bone disease) but this year we’ve been battling more pain in her little legs and therefore have more concerns to think about.

What we need is peace in our hearts and minds. The prospect of yet another set of surgeries for rodding isn’t too far off and weighs heavy on all of us. Of course Sami is scared. And my chest hurts seeing her in physical and emotional pain.

If you haven’t heard, rodding is the procedure of breaking the bones in various spots, straightening them out, and drilling holes into each section to place an expandable rod (like a telescope) in. The bones are supposed to grow around the rods, except Sami’s leg bones like to bow and are doing it even though the rods are in. This makes them less able to help the fractures that already occur because they aren’t as stable.

Type III OI is very rare, and really, Sami’s life is a miracle and an experiment. What is difficult is the unknown … will another surgery give her more stability for 4-5 years? Will the pain of the surgery outweigh the benefits? Is this her pain for the rest of her life? Is she better off in the wheelchair or crawling on the floor? Will the weight on her legs bring more lower back problems? I DON’T KNOW! And I can’t feel like we’re making the right decisions. I’m not naturally a gambler and the experts don’t have certain answers with her.

Please think about, pray, meditate, and send good vibes to us tomorrow while we are at the clinic. We need peace to make the best decisions for Sami and she needs faith that she’ll be alright.

Thank you !!!
Heather
www.oif.org for more info on OI.