Sorry this is long but, I was messaged recently by more that one person in the RSD online community, about why we let Kaylee continue to Dance or Dive. Not that I owe ANYONE an explanaition, BUT If you think I havent spoken to her Drs about this yall are nuts ( or because we only know each other VIA facebook you dont even know me ) , some of you might not know but I work for Kaylees primary doctor and talk to him on a daily basis. ALL of her doctors have said the same thing, Kaylee will have pain REGARDLESS if she is laying in bed or if she is dancing on Broadway, She can have a spread by taking a shower or by smacking hard on a dive, there is no understanding of what causes a spread. What we do know is that diving and dancing keeps Kaylee moving. Physical therapy is one of the key therapies in RSD recovery. To quote one of our favorite pain nurses, NO one does physical therapy like Kaylee. She has close to ZERO arm pain and only has a flair in her arm 1 - 2 times a YEAR! This is primarily due to the fact that the child never stops moving. Kaylee has RSD and it sucks! When she was first injured she quit everything, and she was depressed and her pain was awful. She was in the hospital 22 times that year! Once she started back it helped much more than any medication could have. Apart from blocks she has not been inpatient in over a YEAR! I am an aggressive Mom, yes I push my kids but I am far from a stage Mom as was told to me lately. I am sorry for your children, they have not found what works for them. No 2 patients are the same there is something that will work for them you just have to keep looking. I understand how hard this disease is to deal with. I understand you are tired, frustrated and plain old pissed off that your child has to go through this, I have been there and continue to struggle with that. I dont owe you or anyone any explanation BUT I put this out there because there are RSD parents who read this and I want them to know, your kid CAN do whatever they feel comfortable doing! Dont stop them from reaching for whatever they feel they want, they can do it, yes it will hurt, its going to be painful but so is EVERYTHING they do so why not have some fun! If you dont agree with this, de friend me or block me from the site I really dont care, I am busy watching Kaylee be amazing anyway!
Posted on: Fri, 28 Mar 2014 15:08:08 +0000
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