Stupid Rett Syndrome

First, I need to apologize – I have been a blog slacker for sure! I think the holidays are typically a tough time for me and either I don’t feel like putting my feelings out there or can’t find the time to do so. However, I know you all love and support us through this crazy life so I wanted to update you on our latest “hurdle” with Brooklyn.  Scoliosis.

We have known that Brooklyn had scoliosis for about two years now – that is not the surprise. The issue is that in 18 months it has increased from 15 to almost 40 and that stinks. It has prompted her Orthopedic team to suggest bracing (assuming she will tolerate it). The goal of course to keep the curve from progressing too quickly, to allow us to put off spinal fusion surgery for a long as possible. (Because, well,  that is a big scary surgery)

So, Brooklyn’s back was cast in order to make a mold that will be used for her brace. Her face pretty much sums up the process. She was so brave and so strong – as if any of us expected anything less from her. (ummmm, and why did none of you warn me about the bracing cast process, yikes!)

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I am not going to lie – this is one of those moments that I have been absolutely dreading. I think I did a bang up job hiding my fear and sadness from Brooklyn throughout the appointments – I had to right? I mean I am her mom – I have to keep my game face on even though inside I was so sad, and really really mad at Rett Syndrome and yet something else that Brooklyn is going to have to deal with, it stinks. I am mad and I am not the one who is going to have to wear the darn thing.

Then of course there is insurance – and all the pain that comes along with getting it approved and ordered. I have lost count but I think I am up to SEVEN separate phone calls so far regarding this stupid brace and it has still not been approved and/or ordered. It stinks to jump through so many hoops for an item you hate the very thought of,  an item that makes you want to cry just thinking about.

SO for now we wait, (and return countless emails and phone calls) but it looks like 2016 will start out with a brace for the strongest, bravest, most amazing girl I know.

12 Responses

  1. Cathy Shorma December 14, 2015 at 4:41 pm | | Reply

    Hi. I totally feel your pain. Our daughter was 18 degrees then in middle school she drastically spun out of control and it was painful to watch, tried working with a scoliosis spine center that seem to have success with many patients through facilitated exercise, weight work and spinal or chiropractic adjustment. Although I felt there were benefits to this work the neurological issues associated with Rett are so complicated. I do feel we as mothers have to look at all options and try whatever feels right, but for us we utimately had to proceed with surgical intervention. The curve correction has dramatically improved our daughters spine, confidence and mobility. As her primary caregiver having her back to upright and only requiring minimal facilitated support is also huge on my body. The process is very upsetting and it’s ok to lose your game face and let your daughter know that you’ll work hard together to support her. I send you my love and prayers for extra strength as you proceed through the process. Feel free to e-mail me. We are also friends on FB.

  2. Lesley December 14, 2015 at 6:49 pm | | Reply

    The look on her face just breaks my heart.

  3. Sheryl December 14, 2015 at 8:39 pm | | Reply

    Hi Kelly, I am so sorry that Brooklyn has scoliosis..we tried to prevent the surgery too. Unfortunately, Rett wins. The brace is an added nightmare, how much success is proven? Kelly, the surgery is not going to be prevented. Emilee had it and she probably, needs it again. Rett sucks!! I’m here if you need me.
    Love and kisses, Sheryl

  4. Kim Jones December 14, 2015 at 9:05 pm | | Reply

    Kelly, you amaze me. You are such a wonderful mom to two very special little people! They are incredible kids and I am so blessed to have been put in your lives. Stay strong and keep smiling :) I love reading your posts/blogs, makes my day! Prayers for that brave little girl!

  5. Toni Garvin December 14, 2015 at 10:09 pm | | Reply

    Kelly and family, you are all so strong and know that my family is praying that all goes well for Brooklyn during this trying process. We all know what a strong person you are and it reflects in your daughter. She learned to be courageous at an early age and has continued to do so. May God bless and heal her during this difficult time. Love to all, miss seeing everyone. Toni

  6. Jessica Auner December 15, 2015 at 7:06 am | | Reply

    Kelly, That picture is heart breaking and encouraging at the same time. I wish again for the millionth time that we lived closer. I am praying for and drinking with you. With Wine and Jesus you will get through this. Hugs.

  7. Bridget December 15, 2015 at 8:03 am | | Reply

    I remember the bracing days. I hated them. It broke my heart every time I wrenched that stupid thing on Taylor. Tay had to wear hers 23 hours per day. Rett sucks! Ours girls are fierce warriors though. Give Brooklyn your brave face, but give us your tears. I get it. Praying for you both!

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