So here we are. Back at the hospital.
Lily is participating in a research study over the next 40 weeks on the impact of cholesterol on girls with Rett syndrome. The premise: lowering cholesterol levels in the brain (which are unusually high for girls with Rett) will improve gross motor function. Preliminary research is promising. (And if interested, I will email you the research paper).
I’m filled with tempered hope that all these tests my sweetie is, and will be, undertaking (along with 19 other Rett sweeties) will be worth the effort.
She is so brave. She is so strong. And I’m in awe at how she is taking all of these wires and pricks and prods in stride.
Our follow up appointments – thankfully – will be much less intrusive than this first visit.
I will be sure to keep you all updated on the progress.
C & L