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.

Clean out

A few days ago, I had a stomachache and I asked Seamus what he does to feel better when his tummy hurts. He patted his tummy and said "I do this". Over the next couple days, I noticed he pats his tummy an awful lot. When I asked him if it hurts, he told me "Mommy, it hurts everyday". We've repeatedly told the doctor who doesn't have much else to say but now that his pooping has definitely decreased too, he wanted us to start a clean out.

We started a home clean out with Golytely this morning but the amount we can do at home safely usually barely scratches the surface for Seamus. It's just a prerequesite so when we get to the ER and they tell us to go home and give him Golytely we can say we already did, now admit him.

We'll see what happens.

Oh boy

My sweet darling angel hit a boy at school today. He was playing superheroes and the other boy was the bad guy. This whole superhero thing is getting out of control.

It's weird because his teacher told us at the beginning of the year it wouldn't surprise her if there was some kind of physical altercation at some point between Seamus and this boy. This little boy was not in the class last year so he didn't know that Seamus was the "Alpha Male" and everybody followed his lead. Seamus wasn't used to sharing the spotlight. I was appalled when the teacher told us this.

When we told her all the girls loved Seamus last year, she said "Well, maybe the 2 year olds.." Again, I was annoyed. My little boy is perfect and charming so of course, the girls would still love him. Well, my charming little toddler has turned into a rough, tough boy always on full speed. It's no surprise the girls in their princess costumes and nail polish want nothing to do with him anymore. Okay, Miss Anne, you know your stuff.

Here are some pictures as promised...

I haven't posted pix in a long time so here are some of the highlights from Halloween, Thanksgiving, Christmas and New Year's (notice the hats and the "dudes").