Hey everyone, thanks so much for the prayers for Ben! He had a really rough night but I haven't given any Tylenol since 5 am so maybe we've made it to the turning point. Also he drank 2 oz of water and ate a little bit of a string cheese. He is still sleeping a lot but if we can increase his hydration I think he'll be ok and not have to check in to our favorite hotel. :~)

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!

How many times do you think it's reasonable to bathe the same child everyday? Well if we're talking about Ben who is on lots of serious poo-producing medicines 2-3 baths a day are not only reasonable, they are ESSENTIAL! He seriously takes it to a whole new level of yuck! And the timing is always the worst. I love Ben tremendously, but can I just for one second vent- I am sick of being covered in poo, wiping and scrubbing out poo, doing extra laundry because of poo, and worrying about the next poo I'll discover! It's not the highlight of my day by far, but then Ben just smiles at me while I am cleaning him up and says in his cute scratchy voice "Mama, poo." and it makes me smile and forget the stress and suddenly I love him all the more!

I'm not sure why but I've been thinking lately how thankful I am for wonderful families who are such good influences on my kids. My little ones LOVE to be with grandparents, aunts and uncles, and cousins. Families are what life's all about, right? This is a random picture from Christmas 2009, when Brady was still waiting for his kidney transplant and was really ill. He is much better now but struggles with almost constant infections. We love him and hope he continues to gain strength.

One cute picture at a time...

I just had to share this photo. It was early in the summer this year and it totally makes me laugh. Aimee's lips are actually inside Sarah's mouth! Well they love each other. What can I say.

Ok, so I am way, way behind on posting but it isn't entirely my fault. We had to get a new computer a little bit ago and I am ashamed to admit it but I don't know how to use it, like at all! My sister even came over to show me the ropes and it is useless, and largely embarrassing. Further proof that I am officially old (as if the four kids and the minivan in the garage don't do that already)! All I can say is to offer my sincerest apologies to my devoted followers, both of you, and my hopes to be back in the swing of things in the near future. In the meantime, I've been reading this little book for the book club and have found it charming so far (I'm only about 20+ pages in though). So far it's a pleasant diversion.