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Wednesday, November 15, 2017

Bones and Growing and Trouble

It's gotten easier to talk about this as time has passed, but it's still difficult to think about how life has completely changed.

October 16th. A little cold bug was going around and M was feeling a bit congested. She asked me to rub essential oils on her back before she went to bed. Usually my husband handles this, but he's been going to bed earlier to get up for his second job, so I did it. I immediately noticed that her spine curved to the right. Because of her age and because of respect for our children's privacy, I wondered how long it had been like this. I'm grateful to other mothers I've "met" online who have reassured me that it's easy to miss, even for people who have experience with scoliosis.

I scared M because I said we needed to go to the doctor right away, so we explained everything we knew (not much), and attempted to calm her fears. We visited her pediatrician the very next day and got started on this new journey. I have had weeks when we've gone to different doctors 6 times in 5 days (to be fair, there was a broken retainer in there with a couple orthodontist visits.) We're getting a better handle on things, but this is a new world for me, and I'm so far out of my comfort zone with doctor visits, phone calls, freeway driving, insurance issues, etc. that I don't know how I'm surviving. We are blessed that our two dying vehicles are still hanging in there, despite new and scary noises.

There are opinions online of what is best, but treatment options are limited by age, the amount of growth left, costs, and where you can travel to for treatment. Scoliosis has a lot of question marks around it. There are so many unknowns. I am grateful for the guidance of the Holy Ghost because we desperately need the help of our Heavenly Father as we wander along this path.

It hurts to think about how young M is and how much this will affect the rest of her life. We have seen multiple doctors and have chosen treatment from the team who looked at her as a whole person. Ironically, what we currently feel is the best treatment is the most difficult choice - she will wear two different braces for 23 hours a day and work hard at physical therapy for the next 2-3 years. Our goal is to avoid fusing her spine by reducing her curve, even slightly.

If someone her age needs surgery to place rods in her back and fuse her spine, there are high chances of chronic pain, disc degeneration, and disability in the next 10-20 years. That means that before she is my age she would likely experience daily pain and possible complications. I can't even bear that thought.

If it comes to that, I know that Heavenly Father will strengthen her and help her. I have already learned that she has angels watching over her on both sides of the veil right now.

There is another option for surgery, but by treating her in an attempt to avoid surgery, we risk outgrowing a new surgery called VBT. It seems impossible for us to do though, no one near us does it, and how could we afford that plus travel and living expenses during recovery? We hope that doctors gain experience and learn more about this other option, especially with adults, in case she does need surgery in the future. Everything feels like a big question of "what if?" right now.

M is handling this well. She gets frustrated when I remind her about what her physical therapist wants her to work on constantly, but I think that is only because it's hard to remember every minute of the day. She does great with her exercises and is not bothered at all by having to wear a brace soon.

This is my daughter M. She is in 9th grade this year. She has severe scoliosis with her main curve in the thoracolumbar region. She is helpful, generous, works daily to build her testimony, a great piano player, caring, and a studious teen. It will not stop her.

It hurts me because I know it affects her already, and I know what can happen. She is my baby and I don't want her hindered or hurting. We will get through this with the help of our Heavenly Father.


  1. My sister's oldest. She had to give up ice skating and horseback riding. But she's an impressive runner. She's 19 now and is doing well physically. Mrs Mossi

  2. I guess you'll have to copy and paste into your search bar to read the article as it is not coming up as a hyperlink.

  3. Big hugs to M, I can't even imagine the struggles you must all be having with this. I want to help, please don't hesitate to speak up if you need something. :)
    (side question, her spine looks "normal" to me in that picture, am I missing something? also, that picture is fantastic, but I would expect no less from you!)