Monday, April 27, 2009


I would love to see the world through Seamus' eyes. We went to the movie "Earth" yesterday, which is like the Discovery series "Planet Earth" and shows animals in their natural habitat. I was a little worried because I read some parts were scary for little ones. I tried to warn him ahead of time that if he was scared I would cover his eyes or we could leave. No reason to worry.

In what is probably the scariest scene, a cheetah is hunting a gazelle. Everything is in slow motion with the two animals running side by side. Seamus thought they were playing. The cheetah catches up to the gazelle and grabs his hind end and pulls it towards him. Seamus said "Oh, he loves her." Then in slow motion the cheetah embraces the gazelle and slowly his mouth reaches for the throat. Then the scene cuts away. Seamus said "Oh, they were hugging."

Later in the day, I let him run through the sprinkler in our front yard and before you knew it, we had all the neighborhood kids joining him. Seamus ate it right up and played the perfect little host, even though most of the kids were about 9 or 10. He met a new boy, Joey, that he thought was the bees knees. Eventually the sprinkler activities turned into a squirt gun battle. His greatest love, Stephanie, who can usually do no wrong was trying to sneak up on Joey and was enlisting Seamus' help. She told him to get Joey because "he was a bad guy". Seamus stopped in his tracks and yelled "He is not a bad guy, he's a really good guy."

I just love how he doesn't see the bad in anybody, a cheetah or his new pal Joey. Everybody gets the benefit of the doubt with no preconceived notions. Maybe it's just three year old innocence but I like to think it's also his huge heart.

BTW, we ended up doing three clean-out treatments at home. They were not very successful but seemed to temporarily do the trick. We have to continue to watch him closely.

Friday, April 24, 2009

Sure sign our household is obsessed with poop, Seamus' new joke:

"Why did the chicken cross the road?"
"To get to the toilet."

Again with the poop

Warning: Lots of poop talk ahead

Over the past couple of weeks, it's been evident that Seamus is heading down the blockage road again even with three caps of Miralax every day. After a few days of crying when he went poop and vomiting huge gobs of mucus yesterday, we knew it was time to get cleaned out. He's such a trooper and never complains and when we went in for x-rays yesterday, he was a little charmer. Last night in bed, I thanked him for being such a good boy and he said it was the best part of the day. That definitely makes it easier on me, knowing he's not afraid or upset.

So he isn't completely blocked but he does have a significant back-up. His stools are extremely mucusy and sticky even by CF standards so any back-up is like glue and doesn't clear out easily. We started with a home treatment of a liter of Go-lytely, which normally is a huge amount, but not for my Super Sticky Seamus. It barely touched it. We're going to do another round tomorrow but if that doesn't work, we'll probably end up going in to the hospital. They basically do the same thing we do with the Go-lytely but they can do larger doses and keep in eye on his electrolytes and give him more x-rays to see how it's progressing.

Phoenix's mom, Angela, posted this video today. Please say a prayer and think good thoughts for Angela today. She's been having a rough time lately. She's such a special person and does so much for the CF cause. When we first found out about Seamus' diagnosis, someone gave me this poem and I've always loved it. I love Holland more than I could ever have imagined.

Wednesday, April 22, 2009

Little things

I don't listen to country music very much, not because I don't like the music but because it makes me cry every time. Tonight on my way home from work I was stuck in traffic (what else is new?) and was flipping through the radio stations. I heard a song that sounded good (It Won't Be Like This For Long) and before I knew it I was weeping. Damn you, Hootie, damn you!

These past three and a half years have gone by in a blink. Because I know it won't be like this forever, I want to remember everything I can, even the little things. Like Seamus' two new friends, Gooputz and Har Har, who he is very close to, literally. Gooputz ("Not Gupta, Mommy" delivered with an eye roll worthy of a teenager) is his right hand and Har Har is his left hand and God forbid you mix up the two. They like to climb on jungle gyms and don't like to go to bed.

I also don't want to forget the funny way he has of naming his stuffed animal "dudes". He used to have very literal names for them all like Doggy, Sheepy, and even Dinosaury. Then he got a little more sophisticated with Doggeray, Sheepery, etc. Now he just blurts out a sound like Satsa, Totsi or Gooputz. But the weird thing is he remembers them all even weeks later and never gets the names mixed up.

We went to another Easter Egg hunt last weekend (they had some scheduling problems) and Seamus had a great time, especially on the zip line. Here are some pictures:

Tuesday, April 14, 2009

Easter 2009 and Fundraiser

It was nice to have a little break from the CF world and just concentrate on toddler life. We had a nice relaxing Easter weekend. Saturday, we went to a birthday party for Seamus' friend, Brigid, and had an Easter egg hunt. Then we came home and decorated our own eggs which Seamus loved. Sunday, the Easter Bunny made Seamus work for his jellybeansby leaving him clues like Blues Clues. He came downstairs and found the first egg with a picture inside of the washing machine. At the washing machine, he found another egg with a picture of the computer. Then at the computer, he found an egg with a picture of the tv. Finally, under the tv he found his basket. He got a big kick out of figuring it out. Later in the day, we all went to the park and had a picnic and rode the carousel and train.

Today, we got some great news! One of the local restaurants in our area, Franklin's in Hyattsville, has agreed to do a CF fundraiser for Team Go Seamus Go! It's a great place with microbrew and yummy food, especially the potpie. It's going to be on May 11th. They will donate 20% of your bill to CF all day. They also have a really fun general store with all kinds of funny gifts, jewelry, wine, etc all of which will be included in the fundraiser! I'll post more details later but if you're in the Hyattsville MD area on May 11th, stop by.

Friday, April 10, 2009

Taking a Break

Thanks to Lil' Chris's Mom at A Cure for Lil Chris and Courtney at The Tale of Olivia's 65 Roses for this blog award:

It's for having a blog that "shows great attitude or gratitude". Truthfully, these days I'm having a difficult time with that. The internet is a double edged sword. On the one hand, I've found so much support and comfort in the CF community but on the other hand, some of the things I read are so sad that it's hard to stay hopeful. This week, for some reason, has been particularly hard because there has been news of several young, very young, people with CF who have lost their battle. I'm trying to stay strong for Seamus but it's very hard.

I've decided to take a couple days off from blogging and reading anything related to CF. I know there is a lot more to our life than this disease and I need to clear my head and think about those other things.

Wednesday, April 8, 2009

65 Red Roses Documentary

For a long time, I've been following the blog of Eva, a young CFer who had a double lung transplant last year. I use the word amazing a lot but she truly is amazing. She just got her documentary accepted at the Toronto HotDocs film festival, which is a huge, huge deal. Please check out the trailer below and help spread the word.

Redefining the traditional scope of documentary film in an electronic age, 65_RedRoses leaves viewers with a new appreciation of life and the digital world. This personal and touching journey takes an unflinching look into the lives of Eva Markvoort and her two online friends who are all battling Cystic Fibrosis (CF) - a fatal genetic disease affecting the lungs and digestive system.

Unable to meet in person because of the spread of infections and super bugs, the girls have become each other's lifelines through the Internet, providing unconditional love, support and understanding long after visiting hours are over. Now at a critical turning point in their lives, the film travels the distance the friends cannot go themselves, capturing the compelling and often heartbreaking realities they face, just trying to take each breath.

Monday, April 6, 2009


We had to be at the hospital at 6:30 this morning for Seamus' endoscopy. Things went well and the doctor declared his GI tract looked "pristine". You can't get much better than that. We have to wait about a week for the biopsy results but he didn't expect to find anything.

This was about the 5th endoscopy Seamus has had so we're used to the routine but it's never easy walking him back to the operating room and watching them put him under. He usually recovers pretty easily but the last time he had this done, there was a big mix-up in the recovery room and they put him about a foot away from a teenager with CF, they literally could have reached out and touched each other. I heard the kid coughing like crazy but I assumed it was from the anesthesia. When I heard his doctors talking about Pulmozyme and Tobi, and telling him "all the gunk in his lungs had gotten stirred up" during the surgery, I freaked out. Of course, they wouldn't tell me what he had but I knew and I couldn't get the nurses to move him because they didn't understand about CF. They actually told me "Don't worry, he can't catch it." It was obvious the kid next to us was very ill and I had no idea what he had growing in his lungs and coughing out into the air Seamus was breathing. There's a reason they want CF patients to stay three feet apart. Finally after calling the director of the CF clinic, who was speechless, and said this was a huge mix-up, we got Seamus' bed moved across the room.

This time was much better but it will never be easy seeing him laying in that hospital bed.

Friday, April 3, 2009


Seamus loves jokes. The "Guess What? Chicken Butt!" joke has now turned into penguin butt, rhinoceros butt, and every other kind of animal butt.

His other favorite thing to repeat over and over (not really a joke but funny): "Fuzzy Wuzzy was a bear. Fuzzy Wuzzy had no hair. Fuzzy Wuzzy wasn't fuzzy, was he?"

Tonight Uncle Woody called and told him a good one: "Why was six afraid of seven?" "Because seven eight nine." (Say it out loud)

Seamus rolled on the floor. His response was "I want to tell you the banana pants joke. Why was the apple afraid of the banana? Because he saw the dinosaur." No mention of pants. Well, he's trying.