Wednesday, August 19, 2009

ER visit again

Seamus had a fever of 100-103 degrees from Wednesday until Sunday. He also was having major GI problems. After two weeks of uncontrollable diarrhea, he was constipated and in much pain. He started complaining about food being stuck in his throat and gagging and vomiting when he ate. On Saturday, we went into the pediatrician who declared he had no respitory issues but took a white blood cell count because of the fevers. He had a count to 20,000 which is extrememly high. So off to the ER we went.

They did the regular battery of tests, x-rays, etc. They couldn't find anything that would cause the fever and sent us home.

Since then, he's finished a round of the antibiotics he was put on for the intestinal bacterial overgrowth and his world is getting back to normal. I'm not a doctor but my diagnosis is the antibiotics caused all kinds of upset in his GI tract, which is a common side effect. This in turn caused his eosiniphilic esophagitis to kick into high gear causing the gagging and vomiting. Eosiniphils are white blood cells so it makes sense his count would go through the roof and increased white blood cells cause fever.

He is still vomiting occasionally but I think his EE is finally starting to calm down and his pooping is getting back to "normal", or at least his normal. It's a good thing because we are planning on going away this weekend to celebrate James' birthday and usually our travel plans are thwarted by some medical emergency.

Seamus is getting back to his feisty three old self. On the one hand, that's great, but they're not kidding that now the terrible twos have become the terrible threes. I guess I can't complain too much, at least he's not sick anymore.

Thursday, August 13, 2009

So what have we been up to? Not a whole lot. Seamus has been sick off and on pretty much the whole summer and hasn't felt up to much. Currently, he has a fever that he's had since yesterday. We're not sure what's going on.

It's not all bad. We are very excited about the VX-770 news. For the first time, I really believe a cure is possible in Seamus' lifetime. I've always hoped for one but deep down I don't know if I really believed it.

Since we've been home bound, we've been working a lot on reading. He's not truly reading but can pick out words by sounding them out. Sometimes we look at the pictures and come up with our own stories based on people's expressions.

His growing vocabulary is cracking me up. His three favorite things to say are "actually", "suddenly" and "well", like "Well, actually, I do not want hot dogs for lunch. Suddenly, I would like chicken nuggets."

Here are a few pix from the past few weeks:

Tuesday, August 4, 2009

Moon light

The last few nights have been pretty cloudy so we haven't been able to see the stars. Last night as Seamus and I cuddled in the dark and looked out the window before he went to bed, I heard a little voice say:

"Moon light, Moon Bright,
First moon I see tonight.
Wish I may, wish I might,
Have this wish I wish tonight.

I wish I had a merry-go-round in my house."

Sunday, August 2, 2009


We were looking at the beautiful pictures of our bloggy friend, Natalia, and her baby, Scarlett, yesterday. I pointed to Natalia and said she has CF like you.

Seamus asked "Does the baby have CF too?"

"No, just the Mommy."


"Some people have it and some people don't, just like Daddy and I don't."

"Do I still have CF?"

"Yes, Honey."


This is getting really hard.