Bedtime

Seamus and I have a routine every night. He brushes his teeth, gets his pj's on and we read a bedtime story (or 4 or 5). Then we cuddle in my bed and chat for a little while until he's ready for his bed. These are some of my favorite times and something I hope he always remembers about his childhood.

Tonight, we read a Dora the Explorer book about the circus, then we named all the colors in Spanish, even all the made up colors like pink-blue and brown-white.

S: "Seamus is tired. Is Mommy sleepy? Is Pa sleeping in Heaven?"
M: "Yes, he is, Sweetie"
S: "What color is his plane?"

It took me a minute and then I remembered this conversation we had last summer.

M: "He's not in a plane, Honey. He's in Heaven."
S: "Heaven is in the sky, right? So he's in a plane. Why is he in Heaven?"
M: "He was very old and sick with cancer."
S: "Why was he old and sick?"
M: "Some people just get cancer"
S: "Will I get cancers?"
M: "No, Honey. Pa is happy now and he's not sick anymore. He doesn't need to use his wheelchair and he can dance."
S: "He can dance? Good." Then I heard him softly whisper "wheelchair, wheelchair".
S: "Mommy, how do you spell wheelchair?"
M: "W-H-E-E-L-C-H-A-I-R"
S: "Wheelchairs have wheels. What else has wheels?"

He rolled over on his elbows and looked just like Doris Day in Pillow Talk while we listed everything from cars to wheelbarrows. He thought of some good ones like skateboards and "sometimes, beds have wheels" and of course, planes.

I love how his brain works.

Tough Questions

Seamus is feeling better. His cough finally went away and his culture from last week's clinic visit was clear!

Lately, Seamus has been very inquisitive and not about simple things. He has three friends who have pregnant Mommies. He knows that means they are going to have babies and he asked me the other day when we would have a new baby. He has also been talking a lot about his grandfather, Pa, who passed away last August. Seamus knows he's in Heaven and that he is watching us from up there but he asked recently "But what is Heaven?"

Normally, I would answer these questions with a very simple explanation, but that no longer seems to satisify him. It has started me thinking about how I'm going to handle the really tough questions about his health. He knows he has CF and needs to do his treatments and medicine to stay healthy and for now that's fine. But he's going to start to read soon and I don't want him to read something scary somewhere and think we were lying to him his whole life. I know there will be a cure in Seamus' lifetime but there is a lot of misinformation out there and I would hate for him to stumble across something that would frighten him.

For all the adults with CF out there, how did you find out about the scary facts of CF? Did you parents tell you or did you find out on your own? If the latter, how did it make you feel?

For any CF parents, have any of you had to deal with this yet?

Circus, Circus

We had lots of fun at the circus. It's not at all what I remembered; it's now a giant production like a Broadway show. Seamus was in absolute awe. He especially loved the clowns and this crazy thing with seven motorcycles driving around in a little metal cage like in the Simpsons movie, but multiplied by seven and a much smaller cage.

Here's a video and a picture of Seamus in his new clown mask (kinda creepy):




Sunday, Seamus had a play date at our house with four of his friends. He was in heaven playing the little host and can't stop asking about when the next play date is.

Here's some more pix of Seamus playing with his Dudes and the letter magnets that he is addicted to. Also one of his new soccer class.

Good Clinic

Today's clinic visit went well. Dr P said Seamus' lungs sound good and she thinks he probably caught two separate bugs which was why it seemed like he was getting better after being on Augmenten for 10 days and then getting drastically worse again. Hopefully the Omniceff will kick that soon. She was concerned that he has been getting out of breath which is new. She thinks he may have inflammation of his lungs since he's been coughing for 3 weeks so she put him on a 5 day dose of Prednisone.

But the best news was he gained almost a pound! That brings him back up to the 57th percentile. His height is still the 38th percentile but I think having a five foot tall mother has more to do with that then CF.

Tomorrow we're all going to the circus so I'll have lots to report!

Highlights of our week

Since I've been so bad about keeping up with the blogging, I thought I'd give the highlights of what we've been up to:

- Doing extra "shake and bake" vest treatments to help fight off the cough Seamus' has had for almost 3 weeks.
- Losing lots of sleep; Seamus, because of coughing and Mommy and Daddy, because of worrying
- Switching oral antibiotics to no avail (we're finally going into clinic tomorrow)
- Having Wii parties with our friends (alive and stuffed)
- Making and eating lots of dairy free brownies
- Planning for a trip to Disneyland and Los Angeles
- Learning to play soccer at the Community Center
- Celebrating Ga's 67th birthday
- Taking bike rides with Daddy
- Spending lots of time at the playground and riding the scooter
- Celebrating St Patrick's Day, having fun but thinking about all the CF'ers in Ireland. Ireland has the highest case of Cystic Fibrosis in the world and yet the life expectancy of those with this disease is in the mid twenties because the quality of care is so poor.

Recent pictures and video

Seamus and his ever-present Ketchup


Getting ready for the snow


With Miss Terri on Pajama Day


At the polka birthday party


With the Dudes


The latest moves
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Salt, CF Movie

Thanks to Lil Chris' mom for posting about a new movie in production about CF called "Salt". The filmmaker, Max McGuire, is a 26 year old with CF.

Here's a synopsis of the synopsis:
At 21, the future is limitless. The universe fair, the horizon endless. At 21, we're thinking about that dream job looming at the end of college, how to afford that backpacking trip through Europe, or just when we'll finally meet her, the girl, fall into wild-blind love.

At 21, Will Valley isn't thinking about any of these things.

Will's thinking about the three hours of physiotherapy he has to perform that day, every day. He's thinking about the half-dozen tablets of Creon-20 he downed with his morning pancakes, and the two weeks he spent in the hospital last month, poked and prodded by a salvo of doctors. He's thinking about what it means to be a middle-aged man at 21.

Then in walks love one day, bringing sunlight. Her name's Hannah. She's wise to his defense mechanisms, immune to his ironic detachment, thinks his gritty repartee could definitely use some work. She's seen it all before, you see. Her older brother died of CF one year earlier. By now she knows the score.

"Doesn't matter if you live to thirty or three-hundred," she tells him. "Everybody thinks life's too short." So what are you going to do with the time that you've been given?

I'm looking forward to seeing a realistic portrayal of CF. Most movies and tv shows like to romantize illnesses and don't show the true everyday experiences, but this one should be different. Keep an eye out for it and spread the word!