This blog is dedicated to differently-abled children, particularly those diagnosed with a radial ray defect, hematological issues, Failure to Thrive, developmental delays, microcephaly, cerebellar dysgenesis or cerebral palsy.

Sunday, May 31, 2009

Dr. Paley's reply

After Dr. Paley received Emma's x-rays via email, he responded very quickly:

I see the spike you are referring to. Do you feel it is painful to her? Based on what I see now there is a whole new option for treatment. This is a very good thing. I can join the lower ulna to the lower radius. This will give excellent wrist support and stability. I can of course remove the spike at the same time.

As regards timing, if the spike is at risk of coming through the skin or if it is painful we can operate sooner. Otherwise there is no urgency. Nothing bad has happened.

He added in another email that this is usually not painful, and I have to admit that Emma is not crying and is playing normally. This is comforting, although it still gives me the heebie-jeebies to imagine a bone actually moving around in her arm.

Emma has another appointment in the CHLA ortho clinic on June 1st, and I have a few more questions for them based on the x-rays and Dr. Paley's email.

1 comment:

S said...

Hi!
Could you please email me as nowittyname4me at yahoo dot com My son also has RS and many of the same issues as your daughter. I tried to email you but I don't think it got to you. I am in contact with a few other parents of kids with RS and we are compiling some data about our kids to compare and contrast since our doctors don't really seem to know much about the condition. I really hope to hear from you soon!

On a side note - she is adorable. She reminds me so much of my son and his personality. The biggest comparison I see between all of our kids is that they are the sweetest little ones I have ever seen.