Friday, August 12, 2016

It's Not Over

Today was supposed to be a really happy day ; and this weekend a celebration .

But it won't be .

Six months ago  surgeon told her that he was almost positive that at today's visit ( 6 months later ) he would be able to tell her that her bracing was complete . That all indications were that her growth would be complete .

We were going to have a big brace burning party . And if you were anyone who knows us well and has followed this journey you would have been invited .

Today after he saw her X-rays ( part of her life for 3 yrs now constantly  and makes me sick to think how much radiation is in her body 
) he told her the news that she is still growing and it is not yet safe to take her out of brace .
And we sat there and watched as our daughter came undone . ...









She holds so much inside . Tries to be so cool . So not attached and so unemotional . This time she could not help herself - she cried and cried and now 5 hrs later she is still crying . 

It has now been 14, 080 hrs of wearing her day and night brace over 2.5 hrs to be exact and she is so done . So are we .

But ... Big but . The most important thing is that her curve is stable and hasn't moved in 6 months . She is still always considered borderline surgery as she is almost a 40 degree curve and so that is always risky but the older she gets and less growth there is - the less chance of surgery there is 

And that is what is ultimately and obviously most important . But today was still hard . And a yucky week . She had some bad news at school too that has really affected her and she is also going for some other pretty important tests next week for yet another medical issue . It's a lot for the plate of a 14 yr old girl and I feel for her a lot . To be honest it breaks this mama's heart 

One thing we can know for sure ? This kid of ours has and will have massive resilience in her life . Although scoliosis is not a terrible disease as not life threatening - the length and permanency of it is really hard . We are always waiting on the edge of our seats and each 6 months at the Shriners is a new almost panic attack waiting for the results of X-rays knowing that the results although not fatal are definitely  life changing .

Today I am grateful that I have he kind of career I do that allows me to have more flexibility to be here with her today since she refused to go to dance camp . They are sad moments but I am going to convince her to make up a dance for me and go get a bag of candy with me too . My word this year was "moments " and that includes the harder ones too 

So my thoughts today are for my girl . We are so very proud of her . For all she has been through and continues to go through and for all she has learnt and will continue to learn 

We love her so .


This is the face I want to one day again see...this was a brace break for a week on vacation and I have never seen her so happy and free. One day again.