Good news and Bad news

Do you want the good news or the bad news first?

Well, the bad news is last night about 11:15, I tried to change Seamus' diaper while he slept. His feeding tube got caught on his pants and pulled right out. Well, not completely, and James (not me, I can't stand to do it) was able to push it back in. But we had to go to the ER to replace it because it wasn't going to stay in.

We made it to the ER about 12:15 and after a little wait, we got right in and the docs saw us. Seamus was actually happy to be there. He loves the stickers and all the attention. Since we are no longer using the j-tube portion of the gj-tube that goes into his intestines, they were able to replace it right there with a g-tube that only has a 2 cm tube going into the stomach. That's the good news, if you couldn't tell. That means we didn't have to call repeatedly to set up an appointment so Seamus could come back and go under anthesia to have the Internal Radiologists place a tube in his jejunem. That's great progress.

By 2:00 AM we were ready to leave but Seamus wanted no part in it. He cried because he wanted to stay there. He got over it as soon as we got in the car and I thought he'd fall instantly asleep but he sang the whole way home and was up this morning at the regular time, no worse for wear.

Happy Hannah Day

"It was too cold to go out and too wet to play ball." Sorry, that's from Cat in the Hat, one of our nightly regulars.

It actually was too wet to play ball, thanks to Hurricane Hannah, but we went out anyway. Around noon, we decided we'd had enough so we got our rain coats and umbrella and headed out. Mid-way through the walk, it really picked up but it was all the more fun. Seamus ran and ran and jumped through every puddle. It was windy but not cold and we didn't go far so I figured we weren't getting any wetter than we would in a long shower.

After we came in, Cowboy Seamus (he announced early this morning that he was a cowboy and was never far from his hat and "cowboy shoes" all day) and I dried off and got cozy under the covers in bed and read books. He's really picking up words and is going to start reading to me soon. Then CS helped me make brownies and while we waited for them to cook, we played puzzles. It always amazes me how good he is at figuring out puzzles.

Later, we went to Ga's house and had a nice visit. He conked out on the way home, still in the cowboy hat. It was a good day.

Mini vacation

So we just got back from a much neeeded little break. We went to New York to visit my father and family and catch up with friends. Seamus enjoyed himself, although he is the youngest of my friends' kids and found it hard to keep up with the big kids sometimes. Although the majority of time he was definitely the ring leader.



Ga came with us. It did her good to get out of town and visit with friends she hasn't seen in almost a year. It was hard for her to go to all the places she went with Pa but I think it helped her to talk about him with all their friends.

We spent some time in the mountains at our friends, Deb and Scott's, cabin. It was the first time Seamus had been (pseudo)camping and he seemed to like it, although he kept asking us when our trip was going to start. Before we left, we were worried about how he would handle the mustiness of a mountain cabin and things like campfires and swampy places but we were careful and it all worked out.

On another note, we were looking at pictures of Grandma Jo's kitty who died a few years ago and when we told Seamus she was in heaven, he said "Then Pa can visit with her" so I think he's handling Pa's passing okay.

Goodbye Pa

Seamus' grandfather, who he called Pa, died yesterday. Seamus loved him very much and is going to miss him terribly. Pa and Seamus had a special relationship. Even when Pa was at his sickest, Seamus could make him smile with his high fives and silly questions.

Pa had been sick for a very long time with cancer. In October 2007, Pa and Ga, moved down to MD from Rochester NY to be with us. While we have been building an addition on our house for them, they have been living in a temporary apartment. Twice a week, they baby-sit Seamus and lately he hasn't been able to play with Pa very much. Seamus understood he was sick and had to go to the hospital last week.

Pa was in hospice care where my mom and I stayed with him and yesterday James and Seamus stopped to see us. It just happened to be right after Pa passed away. I was afraid I wouldn't know how to explain Pa's death to Seamus but before I had a chance to figure it out, he asked me "Where's Pa, where's Pa?"

"Pa's in heaven now with the angels, honey, and he isn't sick anymore."

"He's not?" The idea of Pa being well really seemed to make him happy.

But later when he saw that Ga was sad, he seemed confused. I told him she missed Pa and he said "But Pa is in the hospital". We told him again about Pa being in heaven and this time he said "I'm frustrated".

I'm worried because Seamus knows that he gets sick and has to go to the hospital often, just like Pa. I don't want him to associate going to the hospital with going to heaven.

County Fair

I have two words for you, pig races. As soon as Seamus heard there were pig races at the County Fair, it was "When are we going to the pig races?, Where are the pig races?, Can't we go to the pig races now?"

This County Fair was just like what I would imagine a 1950's County Fair in IA would be, minus the deep-fried Oreo cookies and Wii raffle. You'd never think we were less than an hour away from Washington DC.

We saw cows, pigs, sheep and horses. Seamus got to play with a bunch of kids in the "corn pit", a giant sandbox full of animal feed. A clown made him a giant spider balloon that was almost bigger than him.


He went for a ride on the bug roller coaster and car ride, alone like a big boy, and he ate cotton candy. He even won a prize stuffed whale playing a game. It was the duck pond where everyone wins but never the less, he still won.


And of course, there was the pig races (and a duck race). It didn't quite live up to all the build up but Seamus didn't notice. He was too busy playing dragon vs cow and pig with the kid next to us.

On another note, Seamus is totally into the Olympics. I never expected that. He recognizes all the gymnastic equipment and keeps saying "I did that in gymnastics." He also watches the swimming and says they are "scooping and kicking" like he does in swim class.

First Haircut

We couldn't hold out any longer. Seamus got his first real haircut today. Daddy got one too. Seamus told him "Daddy, now you look handsome like me!"

Nice Days

Seammy and I decided to take it easy today. Since it's raining, we can't go to swimming class so we slept in and then Seammy joined me in bed. We were there for hours reading books and playing hide and seek under the covers. I feel like I'm coming down with a cold and it was the hardest thing to stop myself from smothering him in hugs and kisses.

Last night, I came home from work and we spontaneously decided to go out. The town next to us has a new little downtown area with a big fountain to run in and all kinds of new restaurants. Seamus loves it. While Mommy and Daddy ate, he played with the kids and got soaked. I knew he wouldn't eat much dinner but we let him have ice cream (sorbet for him) anyway. Isn't that what summer's all about?

Here are some pictures of our Chicago trip: