"Suffering the Slings and Arrows of Outrageous Fortune"


So, I got word from the doctor’s office that Emily’s bone scan was normal. That good news was followed up with a cautionary statement that the doctor had not yet seen it when the nurse called; he had previously expressed concern that having it done at Reid would mean it would not be read properly and he would have to take steps to make sure it was. So, I am not willing to just accept ‘normal’ in this situation. We see him Friday and hopefully will be able to hash it out then. Also, in my skepticism, we will be getting a copy of the report so I can see it with my own eyes and have it for my records. Not that I don’t want ‘normal’ in this case. Normal would be a wonderful thing. Really. I just naturally doubt when any test my daughter has done is labeled ‘normal’. Also, I am aware that there can be a great deal of variation in results with the type of test Em had done, so the results could be less than clear.

Also, in equally unbelievable news -I just got a phone call from the wheelchair folks saying that Em’s scooter is in and we should be getting it tomorrow. Forgive me for my continuing skepticism, but I will believe it when it is in my vehicle and we are driving away. I should be more trusting but I just am not. Honestly, I had given up on it because I hadn’t heard anything about it and had even received a puzzling rejection letter informing Jody, Dr. Neilson’s genetic counselor at Cincinnati Children’s, that her request for a manual wheelchair for Em was rejected. That was beyond odd since no one at Cincinnati Children’s had requested anything for Em and they were not even involved beyond writing a letter stating that a wheelchair is often necessary for EDS patients. Furthermore, we already have a manual chair and, through Reid Physical Therapy, we were requesting a scooter. I have no idea what the point of that rejection letter was, but, apparently, it had nothing to do with anything.  So, good. I think.

Anyway, in 24ish hours, Em may be the proud owner of her own set of wheels. Pictures will follow if this is not all a great cosmic joke.



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