Update on Cleo

Today we saw the nephrologist for Cleos' follow up appt. Everything went pretty well, with no real surprises. His GFR is now at 24 (up from 20!) so that has actually improved ever so slightly but he is still in stage 4 of kidney disease. Once that GFR drops to 15 he will be in full blown kidney failure so basically we need to try to preserve the remaining function for as long as possible and the only way we can do that now is with the proper diet. We are scheduled to see a nutritionist on Sept. 19 so they can help us with all those issues. He has already cut out salt and we're working on the protein (mostly red meat). That's really hard for a boy from Idaho who loves his meat and potatoes, but we'll get there!! Dr. Khan will be filling out the paperwork to get us in with the transplant team in Atlanta but she said that can take up to 2 months. At that appt. it will basically be 2 full days of testing and then he will be put on the "inactive" transplant list. He will not go on the "active" transplant list until his GFR is around 18 and that is when they will start doing the testing for any potential living donors. They will only test one donor at a time and at this time we're unsure who they decide to test first. It is a very lengthy process and quite expensive so that is why only 1 at a time. Since he could potentially not need a kidney for 6-12 months or even longer, it would be premature to test someone now and then have something change with their health and then find out they couldn't donate and have to start the process over with another donor. We will also be seeing someone with the dialysis team soon so they can go over the 2 different types of dialysis with us so when that time comes, we can make an informed decision of which would be better suited for Cleos' lifestyle. There's a good chance that when his GFR reaches 18 and we start the donor testing process that one will be found quickly and he will never actually reach 15 and need the dialysis, but rather get the transplant right away.

We continue to be very positive and are feeling totally comfortable with the dr. he's seeing. She is a "straight shooter" and tells it like it is without coming off as uncaring or rude. Her bedside manner is great and she has not once made us feel like we are taking up her precious time. Her staff seem to be very nice and helpful and the office doesn't feel depressing when you walk in which is something I'm very grateful for. Right now, I think the family seems to be more frustrated and feeling helpless than Cleo and I feel. Our kids are wonderful and just want their Dad to be healthy again, but he'll get there and he's still feeling really good right now so that' s just one more thing to be grateful for.

We are very thankful for all our family and friends and so appreciate all your prayers, calls and emails these past couple of weeks. We both feel the power of prayer works miracles and we hope that you will all continue to do that on Cleos' behalf. We sure do love each and every one of you and we will continue to keep you updated as things progress.