Today was the day that the doc called to let us know that, our big brother bear also has PH1 (primary hyperoxaluria) so now not only do we have on bear with this silent but deadly killer we have two. Our big brother bear and our lil sister bear both have it the big sister bear (a.k.a grumpy) and the baby bear do not have it. You see it is one of those things that both parents have to have the mutated gene for the babies to have so myself and daddy bear both have it, and big sister bear and baby bear are carriers of the stupid gene. Which means one of my parents is a carrier or maybe they have the diease who knows? Right now all is up in the air and we are slowly trying to pick up the pieces of our lives that have landed at our feet. Hopefully the doses of vitamin B6 will work for both bears. Then we will not have to face transplant in the near future hopefully never.
There are however a few things to be thankful for inspite of the bad news.
1. It was caught early most people don't catch it till they are in renal failure and we caught it now while their kidney function is still good.
2. Brycen does not have it, he is only a carrier.
3. The kids are really doing well with the amount of meds they take, it can be battle with lil sis bear sometimes but for the amount of horriable meds they have to take they are doing quite well.
4. And lastly they did not find this before my bears were born cause if they had I would not have my beautiful bears and I would not trade them for anything!!!!