Sick Days

What a week it has been! Jared got sick again on Wednesday, I got sick on Thursday, Tyler got sick on Friday and Jeff got it on Sunday. So far Alyssa has been able to avoid it. Hopefully it will stay that way. It is one nasty stomach bug. I haven't been that sick for a long time. Jeff was out of town the night that I got it and I spent all night in the bathroom as everything came up from both ends! I was just praying that Jared would sleep because I didn't know how I would take care of him and me at the same time! Amazingly the night passed and 48 hours later I was pretty much back to normal. Tyler and Jeff are feeling better now also. Poor Jared is still struggling. I took him to clinic yesterday and he is down to 24 pounds! He is soooo skinny but we are really having a hard time keeping him on his full feeds since he got sick on May 2. He just hasn't been the same since then. We are putting him back on continuous feeds for the next few days to see if that will help. We are also running some stool tests to see if he might have C-diff or rotavirus. Hopefully we'll figure something out soon. We are also changing one of his anti-rejection meds to see if that will help his BK and EBV. We are discontinuing his CellCept and putting him on Leflunomide. Supposedly, this med has some anti-viral properties that are effective against BK and EBV. Hopefully we'll start seeing some improvement in his numbers in a couple of weeks. He also has a cough that has been bothering him for about a month now. It is worse at night and we can't figure out what is causing this so they want him to go see a pulmonologist. Poor Jared, he has really had a rough month. Hopefully we'll get him happier soon.

I haven't updated on Tyler for awhile. He is doing great! I think that we have finally found the right med and dose that is good for him and he really is doing better. He and Alyssa had to come with me to the hospital yesterday and it was a looooong day. We left at 8:30 and didn't leave the hospital until 3 pm. Two months ago he would have lost it with a day of waiting around like that but he did great yesterday. It is so wonderful having my Tyler back. He is still a little moody and thinks that he needs to be entertained all of the time but I think that this is normal behavior for his age. He hasn't had a really bad episode since the middle of April. I knew that if we were patient and had faith that we would find something that would help him. It was a long journey but he is so much better now. What a blessing he is in our lives. He is such a great big brother. Alyssa and Jared absolutely love him and he is very helpful (when he wants to be LOL). We are going to have one awesome summer!