Yesterday we got the news that we got the Katie Beckett waiver! I am not exactly sure what this means beyond lots of help with medical bills. Which is good because it looks like more testing is in the works.
I met with the pediatrician yesterday and he must not have carefully read the last report the PT sent, because he was surprised that Eve has regressed since her evaluation last year. Then he freaked me out by saying that was "terrible, terrible news." If it is CP she shouldn't regress. He told me to ask the neurologist for further testing (looking for causes of regression) rather than him because he is afraid he wouldn't order the right tests. He also told me that we need to see the neurologist soon (and not wait until our January appt). He said I should call and ask for an appt right away - with Krewiecki or with anyone in his office. Then he said he would call - translation: his office staff would call their office staff.
I am not satisfied with the results. The neurologist's office said that Eve can't see another Dr in the group because they don't switch around patients. The earliest appt is in 4 weeks (which I took, but found out later I can't make) or we are back to January. I am waiting for the Neurologist to return to the office tomorrow. I am hoping he calls me and perhaps orders tests based on our phone conversation. I will also ask if he can see us sooner than January. It's weird that at one time CP seemed so terrible (in comparison to delayed myelenation) and now we are hoping for it (in comparison to some degenerative disease or genetic syndrome). I really hate not knowing what is happening to our daughter. I am looking forward to getting beyond diagnosis and focusing on treatment.
No comments:
Post a Comment