Rainbows & Lollipops or Casting, Bracing & Surgery

Next month Nora will get her ninth cast. It will also (hopefully) be her last cast. Is it strange to say the feelings this brings up are bittersweet? It is strange. I’ve had a love hate relationship with Mehta casting.

I love that our surgeon is open minded and aggressive yet conservative too. Those are the ideal qualities you want in a surgeon. I’m grateful he wanted to do casting with Nora at just 14 months old to try and slow her curve’s progression and buy very valuable growth time. Casting for congenital scoliosis isn’t considered by many surgeons yet; many still don’t think it can work as a delay tactic for surgery in these kids. I love that casting has worked for us for almost two years. I love that casting hasn’t held my daughter back from doing most of the things normal kids do. I love that she’s young enough that she probably won’t remember any of the difficulties involved with all of this. I love that she’s young enough to be proud of her cast and not embarrassed or worried about being different and being teased.

But I hate the cast too. I hate, and I mean hate, the actual casting process at the hospital. I hate how difficult it is to take your tiny little child to the OR and be given anesthesia to be put to sleep while she’s then placed in traction to have a heavy plaster cast applied to her torso. I despise even more how hard the process has been for us coming out of anesthesia. Nora has a horrific time coming out of anesthesia. I’ve done this nine times now and I’ve yet to make it through without tears and begging and pleading with God. I hate that I don’t get to have the collapse-in-your-arms-and-feel-your-child’s-chest-breathing-on-yours type of hugs. I hate not being able to stroke her back. I hate sponge baths as much as she does. I miss water and sand and not worrying about my child getting head-to- toe dirty like a kid should. I hate getting smacked in the head, face and shins from that hard-as-a-rock cast in the middle of the night. I hate that this has been two years of our life, of her life, when she’s so little. I feel robbed in ways.

But I would do it all over again. And I would, without hesitation, encourage anyone who has the opportunity to cast their congenital (or idiopathic) early onset scoliosis child to do it. The benefits are far too great.

So cast life will soon be coming to a close for us. I’m really really excited but I’m also anxious and scared because now I have to think about our next steps. I’ve been able to live in this, in some ways, safe casting world for so long now, I’ve lived cast-to-cast and now that’s ending. Once this last cast comes off in May she will be fitted for a brace for summer and then have surgery late summer.

Now I have to think about surgery. We haven’t made any specific decisions yet on what the surgery will be, we have some time for that, but I still have to think about it now. I’ve made the mistake of watching an actual surgery on YouTube that is a potential option. Why? Because I’m a little crazy. I didn’t watch long but now when I think about surgery, I think about that happening to her. To my sweet little Nora. I think about the how long the surgeries are, the risks, the recovery. My heart races and I can’t help but think I’d much rather be in the recovery room after a casting. That’s right, the thing I just said I’ve despised the most suddenly sounds like rainbows and lollipops in comparison.

For a little longer, I can just focus on this last cast. And on that note, I think it’s time to dig into our Duct Tape collection and pick out our next and final decorative cast tape. Bittersweet.

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3 thoughts on “Rainbows & Lollipops or Casting, Bracing & Surgery

  1. Love your story and felt your heartache. I think of little Nora often. Thanks for the updates and form the sharing. Pictures are really good. I love the one with Matt and the one with you on the Carousel. Her face is adorable.

  2. Thanks for sharing! Your little one is adorable! It’s nice to not feel alone on this journey. My son just turned 6 and is in his 17th cast. He has congenital scoliosis also and started casting at 14 months old. We are in the process of switching doctors because I feel we hit a dead end with our current one. I can relate to so mAny of your feelings in this particular post. I think my family may be tired hearing me gripe.

  3. Thanks for sharing this. It’s good to not be alone. I can’t tell you how many times I have felt robbed by congenital scolio. For her first birthday I went ALL out, because I felt like we needed to just stop and totally celebrate her! We spent so many months upset and worried, months that should have been joyful, wonderful months But while I feel like it robbed so much joy, especially from the first year with my daughter (when we were in the throws of diagnosis, and doctors…so many doctors!) I also feel like it has given me the gift of having her little longer. She has some delays and obviously that’s not ideal for any child, but I feel like I’m getting to keep her a baby even longer. She has also taught me so much about determination in so little time! 🙂

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