Sunday, October 25, 2009

Memorable week

Last week started with a lunch trip to Burger King for James, Seamus, and myself. Surprisingly, it's one of the few fast food places where Seamus can get milk-free, soy-free, beef-free, and pork-free food and they give away good toys.

As we were sitting there, a swarm of police ran by the window with their guns drawn. They ran over to the 7-11 next door. More and more policemen came and surrounded the place. Finally, a man came running out with no shirt on (in 30 degree weather) and a knife in his hand and tried to attack one of the policemen. Within minutes, at least 10 gun shots went off and the man was dead.

We had tried to shelter Seamus but the place was all windows and he saw a great deal of it before I could grab him and cover his eyes. I was much more shaken up about it than him. We don't let him watch violent tv but he's a 4 year old boy obsessed with super heroes so he's seen it and to him it's clear cut between the good guys and bad guys. When he casually asked me "Is the bad guy dead?" I knew he wasn't processing the difference between real life and tv. I told him that people may do bad things but that doesn't mean they are bad people but it went over his head. So far, he doesn't seem to be affected by it. I can't say the same for me.

On Wednesday, Seamus and James went to on a pumpkin patch field trip with school and had a fun time. They saw lots of baby animals, including piglets just a few days old, went on a hayride and picked out pumpkins.

Friday was CF clinic day and Seamus had a great visit. He's gained two pounds and grown half an inch so we were thrilled. He also got his H1N1 shot which takes a lot off our mind. We talked with the clinical researchers about getting Seamus in the hypertonic saline trials. Although it will add extra time in his morning and evening treatment routine and he doesn't have a lot of pulmonary issues currently, we thought it would be good for him. Maybe it will help keep away some lung infections this winter. Also, because he's not a good spitter, any stuff he coughs up ends up being swallowed adding to his already super sticky stools. So we figure if the mucuous is thinner in his lungs, it may help the GI issues too.

We spent yesterday making Batman and Spiderman masks and then going for a "Fall Hike" through our neighborhood in our disguises. Today we made pictures with the leaves we collected.

Lately, Seamus has been asking lots of questions about when he was a baby so we've been looking at photo albums. I didn't realize it but he thought that he was born with his feeding tube in his stomach and was surprised to see himself without it in pictures. It makes sense because he was too young to remember when he got it.

He's also been asking about what his kids will be like when he's "all grown up" and who their mommy will be. He thinks it's really funny that I will be their Grandma. For the longest time, he's been saying to anyone who will listen "I want to be a Daddy." I know he's going to be great.

Thursday, October 15, 2009

Long time

Well, I've let it go too long again.

Seamus had a nice birthday party, even though it got rained out. Somehow we crammed 16 little kids with parents and siblings into our house and still had a good time. It was Spiderman themed so he had a Spiderman decorations, Spiderman Pinata, Pin the Sticker on the Spiderman Game, and of course a yummy Spiderman cake made by his Aunt Meghan. The kids all made super hero masks and had to pick out a super hero name for themselves. Seamus was "Doggie Man."

My birthday was the next week and we had a nice weekend again. Seamus has become obsessed with Toy Story so we went to the 3-D double feature of Toy Story Parts 1 and 2. In that last few months, I've seen both those movies at least 20 times each so having to sit through a marathon was pretty rough, but Seamus loved it. We came home and the first thing he wanted to do was watch Part 2 again. He got Woody and Buzz dolls for his birthday, and he is truly never without them.

He had a pretty rough week after that, GI-wise. He had about 2 good weeks after his hospitalization before the same old symptoms came back. He had x-rays last Friday which showed lots of gas but supposedly not too much stool. Since he's complaining about pain again (it hurts like wood again, no more soft pillows), his doc put him back on the suppositories. It it the worst torture for him but he knows they help. Even while he's sobbing when we do it, he says through the tears "that's better, that's better." He is still not eating or pooping much and his stoma around his feeding tube is leaking which I don't think could be related to rectal ulcers so I think we'll be returning to the doc soon.

I meant to write this story down weeks ago so I wouldn't forget it. For a few days in a row, I could not get the theme song from "The Imagination Movers" out of my head. It was making me crazy. Seamus was trying to help me and said "Why don't you draw a picture of the song so then it will get out of your head and onto the paper?" I thought that was a pretty clever idea.