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.
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Praying for you....and knowing that you will make the best decision possible for your family.
ReplyDeleteRegina
I know this is all just down the road for us shortly with Sonya. We will be keeping you all in our prayers. I can imagine the stress and strong emotions of all this! Keep your head up and know that you are doing the best that you can with Sami's care! It's not an easy journey, but there will be a light at the end of the tunnel I'm sure! Sending you hugs and what strength I have left from a rough day with Sonya being a hard stick with Pamidronate today... Blood everywhere, not fun!
ReplyDeleteThank you so much!! We avoided surgery for one more year (YEAH!) unless there is a major break. Her dexa scan showed a huge decrease in her bone density, so we are adjusting her meds. Come to find out, the hospital here wasn't following the Omaha protocol by adjusting to her growth...so she's been on the same dosage even though she grew an inch. Amazing what can make the biggest differences. Hopefully the cracks will slow down in Oct with her next treatment.
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