Saturday, March 26, 2011


From Julian's COTA journal

Hello all! Stacy here. Julian is healing well from his Tonsillectomy, and he had a follow-up ultrasound for his transplanted kidney today...Dr. Grimm said it "looks good". That is good enough for me! It looks like we will be leaving here on the 3rd of October to go back to Colorado. His after-care right now looks a little sketchy, the transplant nephrologists at Denver Children's have indicated verbally that their clinic isn't willing to see Julian on a clinic basis unless his care is transferred to Denver and we are unwilling to do that. I'm currently looking into the justifications for it and wondering why they can't all just work together on a collaborative basis with Palo Alto (Stanford) Doctors making the decisions and Denver seeing him once a month for his check-up exams to report back to Stanford. So we could use prayer there, since we are bound to Colorado for insurance purposes and Denver Children's have the only Pediatric Transplant Nephrologists in the state. Our pediatrician is happy to see Julian, but he doesn't have the expertise that the Denver team would have and I don't want anything to be missed. For now we will be flying to Stanford once a month until we can get it sorted.

God has been so good to us during Julian's entire journey, and we have been his strongest advocates. I am sure I have rubbed people the wrong way in my tenacity to make sure Julian is well looked after, but my job isn't to have people like me: my job is to advocate for my son. But so far we have no complaints and we are winding up our time here in California.

We look forward to getting back to some normalcy once we leave here. We will go see friends in L.A. and go to Disneyland on Saturday the 4th, which will be fun for all of us, especially Julian.

Anyway thank you all for your continued interest in Julian's care and well-being.