Crazy Days

It has been a while since I have written. The past week has been busy. Jared is still drinking his formula from a bottle. He is actually drinking enough during the day that I don't have to hook him to his pump during daylight hours. What he doesn't get during the day I give through the pump at night. Is is truly amazing. He and I both love not being attached to the pump 24 hours a day. I kept feeling like I was missing something whenever I picked him up the first couple of days. After carrying that around for 2 years, the freedom is wonderful! Jared is loving his freedom. We went to the park the other day and he scooted all over the place. He was so happy. If anyone sees pants or shorts for a dollar a pair, please let me know because he is wearing out the seat of his pants on a regular basis now! :)

We have a few new worries this week though. There is a virus called the BK virus that we all have which lies dormant in our urinary system. When someone is immunocompromised like Jared is, this can wake up and it loves to eat up kidneys. Jared has BK replication going on, so we have to get it under control before it hurts his new kidney. They have lowered his meds., hoping that this will let the body fight it. We will retest in a couple of weeks to see if this has helped. If it hasn't then they will try a new kind of immunosuppresion and they might need to do a kidney biopsy to see what is going on. His kidney function hasn't changed at all yet so that is good. Hopefully we'll start seeing the levels drop soon. They say that it is relatively common and that they almost always get it under control, but it is still a little worrisome. His white count is also starting to go down again so we are doing another CBC tomorrow to check that. If it is still getting lower than we might need to do the neupogen shots again. This transplant stuff is pretty crazy. They told us that we would be trading the bucket of worms that belong to Chronic Kidney Disease, with a bucket of worms that comes with transplant. Boy were they right. It is a lot to keep up with, but when I see how much better Jared is doing, it is definitely worth it.

We went to the Kidney Foundation Easter Egg Hunt on Saturday. It was great and the kids love the amount of treats that they get. It feels good to support the kidney foundation, and seems a little strange that we belong there now. I recently got some organ donation car magnets to put on our cars and I hope that I can do more for this important cause.

Tyler is still plugging along. We took him to a new psychiatrist last week and he stopped the anti-depressants and put him on a mood stabilizer. It takes a few weeks to see if it is helping so we are keeping our fingers crossed. We are so ready to have our Tyler back, and he is so ready to feel like himself again. I just keep praying for peace and guidance with all of this, and know that we just need to be patient and have faith that all will be well. He is such a good, sweet, bright boy and I pray that we can find the answers so that he can reach the amazing potential that he has.

Life is definitely crazy but we are happy and we have the best family in the world. I am so grateful for the Savior and I know that he is aware of our struggles and will help us if we show faith. What a blessing it is to know that he will help us and that he knows us personally.