With a bit of a heavy heart we leave our family in Texas today and head back home to California.
We’ll be her only caretakers now and there will be little to no break. We’ll miss granny and pops and her aunt and uncle. She’ll miss her cousins a lot.
At least we will be able to get back to her therapy and start the real hard work of righting the ship.
Doctor Neul has said the diagnosis really is just a clinical observation so, if we can put in the effort to limit the symptoms, clinically we will have cured her. She’ll still have the genetic issue and neurologically she’ll still have difficulties, but… I guess it’s just semantics, but for someone who appreciates good word play, I’m happy to latch on to that.