Day 42Whew!! We made it ’til the end! There was never any doubt we would, but there were times I wondered “how much longer” and other times I hoped it “would be longer”, but time goes as it will and we are at the end of the trial.
We started the day with a very sleepy girl who did NOT want to get out of bed, but once I told her she was “going to see Rory” things sped up! LOL. We got to the hospital right around 7 am, but things were delayed as Jason, the EEG tech, searched for the pulse ox cable. So, the blood draw was first, which went very well, with my girl giving an emphatic “ALL DONE” when they were on the last tube. Clearly this is her least favorite part of it all.
After a bit, Jason got ahold of the cable and time to set up the EEG. My girl totally prefers a male EEG tech and it went very smoothly, with lots of smiles, some dancing, and giggles.
Very few forms to fill out this time, thank goodness! A quick exam, and EKG which said my girl’s heart is PERFECT ; ). And it was all over by 1130! I was disappointed that Brittani and her grandmother weren’t there, I had hoped to chat, but was told they would be in on Tuesday, which would work out ok as I have to pick up the plate for Dr. Glaze and drop it off tomorrow.
The weight check showed a slight gain in weight, may be due to the more clothing as last week she was in shorts and this week, ha! cold, cold, cold so it was long pants, shirt and sweater. But in any case no loss, so I am relieved.
I had only a few questions-
When would I find out if Katelin was on the NNZ or placebo for sure?-late 2014
When would Katelin be offered the meds as part of “compassionate of care” for participating in the trial?-about the same time.
So, now we wait again, but as I contemplate this experience it has so been worth it. I feel like for once I have helped Katie walk all over Rett Syndrome instead of just watching the reverse. The empowerment that comes with proactivity cannot be underestimated. We have boldly gone into the unknown and come out with the brass ring. So, as we ring in the New Year-here’s to the fall of Rett Syndrome, here’s to the researchers, doctors, families that live with Rett Syndrome and yet persevere, but mostly here’s to my Katie who has been so brave and done more than should be asked of a person and done it most often with a smile and determination.