Emma's Journey

Emma went to see Dr Wright today for her muscle stiffness. He was very nice, I was highly impressed. He told me a few options we have with Emma and let me kind of pick what to do. We have decided to try a medicine that should help her muscles relax some its called klonopin she was on it once before but they took her off to see if that was what was causing her to stop breathing, it was not. Anyway we see him again in a month and we can figure out if its working good or not and decide if we should continue it. It makes you sleepy, so we might make her so tired she sleeps ALL the time or it might cause her sleep apnea to act up but that won't be a big problem physically though thanks to her ventilator.

Our other options if this does not work is to try another medicine or try botox injections. He also suggested botox injections into her salvia glands to help reduce some of the spit she makes since she drools constantly. I am thinking that sounds pretty good, although I have to do some more research on it online, I hear it is painful and I am not sure about the side effects.

It was hot, the guy from the medical driving company was nice to us and waited for us to finish so we had no waiting and today's trip went quick and easy. We will get her Klonopin tomorrow and I will let everyone know how she does on it in a few days.

We will get her all fixed up soon I hope, atleast as fixed up as she can possibly be, it would be so nice to get her less stiff, it will be easier to hold her and dress her. She is very hard to get into pants so I am hoping by winter we see good results.