Friday, April 27, 2012

I hate Scoliosis

Update...Scoliosis sucks!

We have had to change things around the last few weeks due to scheduling and Abby hasn't been able to go to the Chiropractor or massage for 3 weeks. Her back looks terrible.
After seeing her back today, the massage therapist thinks we need to go back to once a week for adjustments and massage. I agree with her. You can so see the curve coming back and the muscles on her left side are protruding.
Her PT this am said she is trying to rotate her spine also. I wish I had a magic stop it button.
Last year we had some generous folks pay for 32 sessions. That has lasted a year due to the first six weeks being x2 then the rest being every 2 weeks. We will run out of sessions in the next few weeks. I don't feel like I can ask them again. I had planned on using our tax return to help this year but with the $55.00 we had left after paying off my own Physical therapy and 3 trips to the emergency room we just don't have it.
I don't know what to do. Giving up our whole way of life once Rett syndrome hit has been hard enough. A vacation every 2 years involves Rett Syndrome. Every day..24 / 7 is Rett Syndrome.
I lay awake more often than not trying to figure out how I can work and take care of Abby too... I can figure out no way. We would lose her insurance that pays for all her formula, all her meds, all her diapers, one of her 5 therapies and their would be no one to take care of her every need or take her to everything she needs to go to.
As always. I will find a way...some how to get her what she needs. If organ selling was legal...I'd have nothing left.
I need a break. soon. Something to go right. I can't struggle like this forever. It's sucking the life out of me.

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