Well, I am a little frustrated.... Dr. K's office called and asked us to come in early at 1PM instead of 3PM... We rushed to get there and made the 3 hour drive on time without any stops. We didn't even stop to get the kids lunch... BIG mistake! Dr. K didn't see her until after 4PM!!!The appointment itself went ok, but I felt rushed. Sage was suppose to be seen... I had already sent all of her medical records, etc... Nobody seemed to remember that part. As for Ana, she recommended some cocktail changes, AFO's, an eye exam, an EEG, and consults with Pulmo, Immunology, and of course GI. She sent us to get labs, but the lab was closed, so off to the ER we went... Would you believe my little Ana didn't even cry when they took her blood!!! She told me she was gonna be brave and boy was she brave! We left the ER at 6PM and headed back to Universal City... We stopped in Katy for dinner and got "home" at 11:30PM.
Dr. K and I did talk in depth about the severity of the peripheral neuropathy in her legs. I hope we will get more answers from GI as that is our number one issue and she would not address it. She said that Dr. R would be able to help, but it was not her area of expertise. All in all, it was a good appt to get acquainted with her. I can tell she will assist our local doctors in any way she can. I feel better about e-mail communication, also. Just disappointed in the quality of the appointment, as we came 20 hours to see her...
We plan to follow-up with her in November. She is sending tons of info to our doctors and hopefully that will assist them in carring for Ana.
Please keep praying for Ana!