Light at the end of the tunnel

A little over two years ago ago my daughter was diagnosed with Idiopathic Scoliosis during a routine annual physical. At the time X-rays revealed her S curve was at 14% overall. Twelve months later (last May) it went to 23%. Unfortunately this meant it was time for her to wear a back brace.
To put an active 13 year old that just ran a 10k into this contraption for 23 hours a day was very difficult but she understood it would be necessary to prevent surgery. The brace is needed to keep her spine straight until she stops growing which would be monitored every six months with X-rays.

Front/Back view

Front/Back view

The past year has been extremely challenging. I was worried she would lose some of her sparkling personality due to the brace but she started off with the best attitude saying “Haters are my Motivators”. She went to school with the brace under her clothes and yes, unfortunately it stuck out past her hips and buttocks being very visible. She can take it off for PE since it is only every other day and a short period of time (PE in our schools are such a joke, She tells me half the time they just stand around so she doesn’t even bother taking it off. Instead she goes to the gym with me occasionally to get her excercise in or joins me for a race.) Fortunately she has supportive friends and family so the transition was made easier. Clothes shopping has been the biggest obstacle. She can barely button her jeans, the brace wears holes in all of clothes, she prefers tops that covers the brace which is extremely hard to find. (She lives in Varsity Sports t-shirts) Vacations had to be reconsidered. Beaches and water parks were no longer practical so we went on a cruise last summer. We gave her one day out of the brace when we were in Cozumel (don’t tell her doctor).
Cozumel 4th of July Weekend cruise 2013 at Mr. Sancho's

Cozumel 4th of July Weekend cruise 2013 at Mr. Sancho’s

I have encouraged Alaina to stay physical as much as possible but her motivation has been lacking over this past year. She still has done a few races. (We take off the brace right before the race starts and leave it in a safe place)

Pics from just a few of Alaina's races the past year

Pics from just a few of Alaina’s races the past year

This Monday we had our one year update. I had a huge amount of anxiety leading up to this appointment. Would the doctor say the brace is keeping her curve in check? (She had gotten quite tall in the past year.) How much longer would she have to wear it? Would she still need surgery?
The doctor pulled up the previous X-rays and the current. Success! From the last appointment in October she increased 2% overall (of course I would have preferred a decrease, She is now at 29% overall apprx) but the doctor said that was good news. Looking at her growth plates she is about to sprout up again so he tells us the brace is no longer fitting well for her low lumbar (which has the largest curve) so he tells us she has to get a new brace made ASAP. This is disappointing for Alaina since she starts high school in the fall and this means the new brace will fit low on her again (she will have a hard time hiding the brace under her clothes) but we understand it must anchor on her hips correctly. (I hadn’t noticed how much taller she had gotten until then.)
The good news is it appears she will only be in the new brace for 9-12 months and her journey should be over. No surgery! (I breathe a sigh of relief) I tell Alaina to just “embrace the suck” and that her Sophomore, Junior and Senior year will be great! She will be able to wear whatever clothes, dresses she likes and that she will be a beautiful Swan. She looks at me and asks “What, are you calling me a Duck?” lol! I laugh! (Mouth, insert foot) I respond, “Well, your a beautiful Duck!” laughing….

She still has her Spark πŸ™‚

β€’ 5/1/2013: Starting point with the brace: 11 thoracic/ 14 lumbar
β€’ 10/28/2013: 6 months in the brace: 13.5 thoracic / 14 lumbar
β€’ 5/5/2014: 1 year in the brace: 14 thoracic / 15 lumbar
β€’ 5/2015: Hoping this journey will be behind her. Stay tuned.


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