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!

Feeling Better

The antibiotics finally kicked in late yesterday. Clinic had said to go ahead and bring him in today but by yesterday evening, his cough was much better and he slept much better. That is until the feeding pump incident.

He gets Miralax in 250 ml of water through his g-tube when he first goes to bed which needs to go in fast, 500 ml/hr. When that's done we switch him to his formula which runs all night at 65 ml/hr. Last night we accidently forgot to change the settings so in half an hour he had already gotten four hours worth of formula. He woke up screaming and vomiting all over the place. The poor kid can't catch a break. He was finally starting to feel better from his cough and then we go and pump his stomach until it's ready to burst. We felt so terrible.

This morning he was chipper as ever, so I think his stomach is okay. We called clinic and said we weren't going to bring him in after all.

Bad Night

Seamus' cough has never been this bad. He was up all night coughing and choking on mucus and none of us slept at all The only time he was remotely this bad, he ended up on IV antibiotics in the hospital. He's been on oral antibiotics at home for just a few days so hopefully they'll start working soon. If not, they want us to bring him into clinic.

I read all the other CF mom's blogs and I know this isn't all that bad compared to how it could be. I give so much credit to the families who deal with pulmonary stuff all the time but for Seamus, it's really rare so it's really scary to me.

Most of the time, I'm in denial. There's not a minute in a day that I don't think about Seamus having cystic fibrosis but I've always had the "comfort" of knowing he "only has GI issues". I read the other blogs and think, "Thank God, that's not us" but last night lying in bed helplessly listening to him, I couldn't help thinking "Okay, is this the beginning? Has the lung damage started?"

I try to tell myself that I'm overreacting. Of course he'll be better soon and his lungs won't be permanently affected from this episode. But how long will that be true? As a CF parent, I cling to the hope that a cure will be found before his lungs are damaged beyond repair, but as I lay in bed at 1:00 AM and hear my precious son gasping to breathe between coughing fits, it's really hard to hang on to that.

Update

It's been awhile since I've posted. I just haven't been in the mood, I guess.

I feel bad because Seamus' little cough has now turned into a huge hacking cough. We held off on the antiobiotics but now I think we waited too long. Since he rarely has any pulmonary issues, it really freaks me out to see him like this. He's bringing up lots of gunk but he still can't figure out the whole spitting thing so he ends up swallowing it. This morning he vomited tons of thick mucous. I'm glad he got it out because otherwise it ends up in his stool which is already sticky enough.

On a happier note, we had a nice weekend. We spent a lot of time making paper ties and hats for tea parties and Elmo's birthday party. He loves to line up his "dudes" on all the furniture with their fancy hats and ties on. Sometimes, you can't find a seat in the house because everywhere is covered with a stuffed animal.

We also had a great time at our neighbor, Emily's, 70th birthday party. It was held at Blob's Park which is a German Polka place. Seamus wanted to bring a "dude" with him so we told him he had to chose one. He picked Snoopy because "he's the best dancer." Seamus (and Snoopy) really got the hang of the polka and entertained the crowd.

Yesterday, we had our first snowstorm with about 7 inches. I got a snowday off from work so Seamus helped me shovel and sweep off the cars. Then we spent the afternoon cuddled up in bed playing Nickolodeon computer games. Not a bad way to spend the day.