Conner

Please help out Conner's family. They are in the unthinkable position of having to plan a funeral for their 7 year old son. Please donate what you can.

Striding

This past weekend was our Great Strides Walk and it went well. Team Go Seamus Go raised almost $4000 and the whole site that day made almost $150,000. So it's a good thing, a wonderful thing, that I know is helping fund the great research that is getting so close.

But I hate it. I feel like everyone in the CF community gets so excited and has a good time but every year I hate it.

I hate it because it reminds me that my son's life literally depends on these stupid walks and begging people for money.

I hate it because I am so worried that one day soon, he's going to look at his face on those t-shirts and not say "Hey, that's cool that everyone is wearing a picture of me" but "What's so wrong with me that all these people are making a fuss?" and "Why are these people making speeches about young people being sick and dying too soon?"

I hate it that I have to worry if he's playing on the playground next to another little kid with CF who has something growing in their lungs that can kill him.

I hate it because it reminds me that Seamus' bouts of sickness seem to be getting more frequent and it is getting commonplace to hear his cough.

I hate it because it reminds me what this horrible disease has done to wonderful people like Eva and Conner and thousands more like my son.

So I'll leave it to other people to celebrate. I just don't have it in me.

Snow bound

Seamus has a serious case of cabin fever...

Snow, snow, snow

Winter has been rough on Seamus. In the entire month of January, he was able to go to school only 3 times. First it was the hospitalization, then MLK Day and Parent/Teacher conferences and then the flu swept through his school so we kept him home for a few days. So he's had a bad case of cabin fever and now all the snow has added to it. We had a snowstorm last Saturday, more snow last night, and we're expected to get almost 2 feet on Saturday again.

We've tried to keep busy by playing computer and Wii games, sledding, making snowmen, and of course, drawing and cutting dudes. Today, James and Seamus took an inventory and actually counted almost 200.

Being cooped up has made him pretty snarky. He's getting more and more defiant and spending much more time on the Naughty Step. Tonight at dinner he started pounding the table and told me he was very frustrated because he did not want fish sticks.

He's also decided he's a big boy and no longer likes to snuggle before he goes to sleep. We read books and then he tells me leave. Sometimes after I leave, I hear him roaming around his room dragging his IV pole around with him.

The clean out took longer than we expected. He wasn't clear until Saturday after about 24 liters of Golytely. He had a lot of malabsorption that was stuck. We go back to CF clinic tomorrow and have to discuss switching enzymes. He takes 9 Pancrecarb MS4s with meals which is already the highest dose he can take so I don't know what else they can do. He also seems to have caught something while he was in there because he's been coughing and pretty junky sounding.

Seamus has a new hobby, cutting with scissors. Santa brought him a pair of kiddie scissors and they're his favorite present, by far. Seriously, from morning until night, he cuts, cuts, cuts paper "dudes", pictures out of magazines, or anything he can find. He's surprisingly really, really good at it and we spent hours in the hospital drawing and cutting all the Disney and Nick Jr characters.

A funny hospital story: I had to leave the room for a minute so I showed him how to use the call button and told him to call the nurse if he needed her. Apparently, as soon as I left the room, he pressed it and said over the intercom for everyone to hear "Hello, my name is Seamus and I would like some crayons please."

Some of the worst words a parent could ever hear (besides "I'm sorry, your baby has Cystic Fibrosis) are from your child begging you to make the pain stop and being completely helpless.

"Please Mommy, make them stop. I said please." It breaks my heart every time we are in the hospital and Seamus pleads with us to stop the doctors/nurses from doing some very painful and scary procedure. We are supposed to protect him and I feel like we are letting him down. I put on a good face and act strong so he won't be as scared but I feel like a piece of his innocence is taken away each time.

Finally after screwing around with home treatments that weren't making any progress, he finally got admitted last night. He is doing okay but is still not clear after 24 hours straight on Golytely.

I was feeling pretty low today and then I thought about all the great things we've been able to do that we wouldn't have if Seamus hadn't been in the hospital 19 times. We've spent hours and hours playing with play dough, drawing pictures, telling silly stories, and laughing. We do these things at home too but while we're here, there are less distractions and more time to just concentrate on each other. Obviously, it's not all fun and games (see paragraph two) but it's not all bad either.

I hope that's what Seamus can remember too when he thinks back on his childhood hospital stays.

Quick update

We did the clean-out on Wednesday which helped a little but his tummy still hurt and he wasn't pooping much. Dr C said he needed an x-ray which we got yesterday afternoon and surprise, surprise, he is still full of poop. He wants us to do another 4 hour clean-out today. I feel like we're spinning our wheels.