Not okay

I had a stomachache one day and I was complaining about it. I asked Seamus "How do you do this all the time? Does your stomach hurt everyday?"

"Yes"

"I'm sorry, baby"

"It's okay, Mommy"

But you know what, it's not okay.

It's not okay that just the thought of pooping can make him cry.

It's not okay that we're no longer surprised when he jumps up in the middle of dinner to go throw up and then comes back and finishes his meal like nothing happened.

It's not okay that some days he is so gassy and distended that he can't tolerate shaking in his vest because it hurts too much.

It's not okay that every day a four year old boy has to be tied to his feeding pump for 2 hours getting Miralax pumped through him in order to poop, along with Mucomist to make it less sticky, Erythmycin to improve motility, Prevacid for reflux, probiotics for bacterial overgrowth, swallowed Flovent for eosinophilic esphogitis, and Pentasa for colitis.

It's not okay that he gets humiliated when he has accidents, which are no fault of his own, because of all the medicine he gets pumped through his system.

It's definitely not okay that even with all the daily meds, he still gets blocked up and now needs a weekly heavy-duty four hour clean-out with Go-lytely which means every Sunday we can't leave the house because you never know when it will go into effect.

There is just nothing that's okay about what he has to go through.
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He had CF clinic on Friday. Our regular doc, Dr P, is on maternity leave so Dr Preston Campbell, the medical director of the Cystic Fibrosis Foundation was filling in. He was really good with Seamus and talked with us for a long time about Seamus' GI issues. He told us he has never seen any other CF patient with such extreme GI issues. That was a shock because he has seen thousands of patients. At first, I thought, "Okay, we're not crazy. This is really serious" but then I thought "Oh shit, we're not crazy. This is really serious."

He didn't really like it that so far, the treatment has basically been just to keep increasing Seamus' meds and when that doesn't work, admit him for a longer clean-out than we can do at home. He didn't really have anything new to offer that could help Seamus currently but he does feel that there is hope. Some of the new drugs being developed work specifically on Seamus' type of gene mutation. There is also a new enzyme which should be approved soon that is the first one not made from pigs. Since Seamus' most severe food allergy is to pork, that's good news for him.

Thank you, Mary Kate

We met Mary Kate McKenna last year when she did a photo shoot of Seamus for "The Littlest Heroes Project". Seamus and MK hit it off right away and although we only spent a few hours with her, we've kept in close touch.

She is getting married this weekend and this what she posted yesterday on her Facebook account:

Many of you have asked what you can do for our wedding- I have a simple request- please donate to the Cystic Fibrosis Foundation in honor of one of my very favorite people on this earth, little Seamus, who stole my heart when I photographed him and his family last year. (here's some photos: http://bit.ly/seamusc) Seamu...s (child of James Coleman and Julie Scheib Coleman) is an incredible kid- so let's use this time of celebration to help find a cure for this painful disease. Thank you all so much! http://www.causes.com/causes/469?m=9e4cc0c7&recruiter_id=398845

She is the one who should be recieving gifts yet she gave us the best gift of all. I can never repay her. She truly is amazing.

Not only is she a great person, but she's also a fabulous photographer. Here's a video I made of her photos. I've posted it before but I can watch it over and over.

Make an on-line slideshow at www.OneTrueMedia.com

Beautiful

Last night we were expecting a thunderstorm after a stifling, humid day. Just around dusk, I went out on the back deck for a minute and noticed something so I called to Seamus to join me.

There were hundreds of fire flies twinkling in our yard and in all the surrounding neighbors' yards. I've never seen anything like, even out in the country where I grew up. Seamus and I stood out there watching in silence, except for a few oohs and aahs, for a very long time before the rain finally started. It was still too beautiful to go inside so we sat under the picnic umbrella and enjoyed the rain and cool breeze.

Later, when James came home, Seamus told him all about the "lightning bug show". That's one I'm going to treasure.

Conner

Please help out Conner's family. They are in the unthinkable position of having to plan a funeral for their 7 year old son. Please donate what you can.

Striding

This past weekend was our Great Strides Walk and it went well. Team Go Seamus Go raised almost $4000 and the whole site that day made almost $150,000. So it's a good thing, a wonderful thing, that I know is helping fund the great research that is getting so close.

But I hate it. I feel like everyone in the CF community gets so excited and has a good time but every year I hate it.

I hate it because it reminds me that my son's life literally depends on these stupid walks and begging people for money.

I hate it because I am so worried that one day soon, he's going to look at his face on those t-shirts and not say "Hey, that's cool that everyone is wearing a picture of me" but "What's so wrong with me that all these people are making a fuss?" and "Why are these people making speeches about young people being sick and dying too soon?"

I hate it that I have to worry if he's playing on the playground next to another little kid with CF who has something growing in their lungs that can kill him.

I hate it because it reminds me that Seamus' bouts of sickness seem to be getting more frequent and it is getting commonplace to hear his cough.

I hate it because it reminds me what this horrible disease has done to wonderful people like Eva and Conner and thousands more like my son.

So I'll leave it to other people to celebrate. I just don't have it in me.

Snow bound

Seamus has a serious case of cabin fever...

Snow, snow, snow

Winter has been rough on Seamus. In the entire month of January, he was able to go to school only 3 times. First it was the hospitalization, then MLK Day and Parent/Teacher conferences and then the flu swept through his school so we kept him home for a few days. So he's had a bad case of cabin fever and now all the snow has added to it. We had a snowstorm last Saturday, more snow last night, and we're expected to get almost 2 feet on Saturday again.

We've tried to keep busy by playing computer and Wii games, sledding, making snowmen, and of course, drawing and cutting dudes. Today, James and Seamus took an inventory and actually counted almost 200.

Being cooped up has made him pretty snarky. He's getting more and more defiant and spending much more time on the Naughty Step. Tonight at dinner he started pounding the table and told me he was very frustrated because he did not want fish sticks.

He's also decided he's a big boy and no longer likes to snuggle before he goes to sleep. We read books and then he tells me leave. Sometimes after I leave, I hear him roaming around his room dragging his IV pole around with him.