Glad to hear from you. Tuesday we leave for our trip to see Dr. Wong. I will keep you posted. I read Liams caringbridge site all the time, I just haven't posted anything. Your family is in my prayers all the time. I will be at the next meeting with Trisha, and hopefully her sister. We now are dealing with this monster disease with 2 boys in our family. Hope to see you soon. Take care Pam
Eric and I got back from Cincinnati on Friday and all went pretty much as expected there. I know we could get all of what was done there done locally, but I definitely think that the experienced, total comprehensive care is worth it.
Since my return I have been working on the TB test, ordering Deflazacort out of the UK, filling out MDA paperwork. Michelle and I have been also working on the nutritional aspects. Now I am onto next steps of getting the AFOs, a Nada Chair and will then begin working on putting together the stretching regimen.
Thanks for dropping Doug a note. They actually got in to Cincy last week on a last minute cancellation. I was glad for them.
We are having thunder snow with hail in some parts of Texas. It feels very cold here today since we have been having some 80 degree days.
Flat Stanley is on his way home. I had some technical difficulties and was delayed in sending him. I couldn't get a paper copy to print. I sent him home with power point documentation! It is formatted to play on any computer. Tell Jack thank you for sending him to us. We had fun with him.
Sorry that I haven't gotten back to you in such a long time. I was wondering if you are planning on going to the DUchenne Connect Conference in June in Atlanta?? My husband and i just started to talk about it. Hope all is well, Jessica Arndt