Ben is sick :(

So I haven't really blogged about this and it's been going on for a long time it seems so I guess now is as good a time as any. In May, Ben got sick. Really sick. Basically what we would think of as bad cold symptoms, you know, cough, runny nose etc. but way, way worse. Because we suppress his immune system with medications anytime he gets sick he is so much worse off than someone with a normal immune system might be and it takes a really, really long time for him to get better. In fact, he isn't better yet! It's been six months with the same illness!!! We have seen lots of doctors and they have tried lots of different things. Then when they run out of ideas they refer us out to someone else. Sometimes he would have a few good days here and there and we were hopeful he was finally getting well. Unfortunately he would always take a bad turn. He was hospitalized at Primary's in August because he was having fevers in the high 103's that wouldn't come down no matter what and he was really dehydrated and so lethargic. He couldn't breath and was pulling in and working so hard. Miraculously IV fluids helped a ton and he was able to go home after only two days. But we just keep going around in this cycle and I really don't think he's ever quite gotten better. After hours at the dr's today (poor Sarah was buckled in her car seat from 8am to 3:30 pm with only 20 minutes that I could take her out and hold her the whole day!) and lots more tests the transplant team called tonight suggesting they admit him again. :( At that point he'd pretty much stopped eating and drinking completely and had only had one small diaper early this morning and none the rest of the day (I know, my last post was complaining about too many diarrhea diapers all over the place and now I'm complaining he's not having enough! Guess you just can't please me!). Another thing is he just wants to sleep, all the time! I know sickies need their rest, but he won't wake up! Also, he won't hardly talk or walk or do anything. Just wants to be held and sleep. I don't like it one bit. He is TINY. He is still in the same size clothes and shoes he wore last Christmas. He had lost more weight at the dr today and I just don't like it one bit. He doesn't have any reserve when he gets sick. Who would after being sick this long. I worry about my little guy. I thought, while soliciting my dear friends for your prayers for Benny, that I'd show you the few pictures I took in August when he was back in the hospital. He is darling and doesn't look nearly as sick in the pictures as he was in reality.

Here's Cody reading to Ben when he came up to visit. This book is a version of "I Know an Old Lady Who Swallowed a Fly" but it's "There Was a Coyote Who Swallowed a Flea". Cody bought it in Texas when he was on a trip. It's hysterical and all our kids love it.

Ben was trying so hard to look interested and not fall asleep!

The second day he ventured to try two fruit loops and one peach. Progress any way. Plus he was sitting in the high chair and not just wanting to be held.

He even gave a little smile.

He isn't smiling today. I have him sleeping right next to me so I can watch him closely. He did have a few bites of yogurt and a few sips of his water so we are going to watch him through the night. If he needs it, we will take him to the ER tonight. If he does well through the night we will call the docs in the morning and go from there. Say your prayers tonight, please. I sure love this little guy!