Wednesday, December 29, 2010

For Seamus

One day, Seamus is going to find out the circumstances of his brother's origins and I wanted to write down the story to help him understand.

When you have a child with Cystic Fibrosis, deciding whether to have more children is a difficult decision with much to take into consideration. We did not make this decision lightly.

My childhood was full of moments that I couldn't imagine getting through without my brother being by my side and I know James feels the same way about his siblings. We always wanted Seamus to experience that too. He is definitely in for a bumpy road ahead and there is nothing like the love of a brother or sister.

But we also knew the risks. The chances of having another child with CF was 25% which may not seem like a lot to some people but it's huge when you are looking at your child suffer in the hospital and have to watch him go through all the daily stuff he has to endure just to try to stay healthy.

Another CF mom I know put it well when she said "Women take all kinds of precautions like not eating soft cheeses or raw fish when the chances of that causing a problem are so small. Why would I take the much bigger chance of giving another child a horrible disease like CF?"

If we had another child who did have CF, I can't imagine the guilt I would feel. Not only for bringing the child into the world knowing how much he would suffer, but also knowing I would be affecting Seamus' health as well. The recommendation is that people with CF should not be within 3 feet of each other because of cross contamination but obviously CF children in the same family can not adhere to that. Whenever one grew something in their lungs, they would be sure to give it to the other.

There is one way for two carrier parents to have a child and insure (at least 95%) that they will have not the disease, and after many years of deliberation, that is what we decided to do. It's called Pre-Genetic Diagnosis (PGD) which is used with in vitro fertilization. They can tell as early as 3 days whether an embroyo carries the genes for CF.

It's a very touchy subject in the CF community because people have many opinions about it. Some think we should leave it up to God who does or does not get the disease or they think a cure is going to be found soon, so if another child has it, they will be fine. Some people who have CF feel that if their parents had used PGD they would never have been born and maybe it makes them feel like the world is telling them they shouldn't exist.

I want Seamus to know that is not how we feel at all. We would never, ever change anything about you. You are a kind and compassionate little boy and we know part of that comes from your experiences with CF. We desperately hope for a cure, but with or without one, CF will always be a part of the wonderful person you are.

I hope you can understand why we made the choices we did for your baby brother. We wanted to protect both of you. You are going to be a fantastic big brother and he is going to love you so much, just like Mommy and Daddy.

In no way did I write this post in judgment of other CF parents who may have made a different decision than ours. There is no easy answer and I respect any parents who have to deal with these issues. I ask that you respect our decision as well.

Wednesday, December 22, 2010

Catching up

It's been a busy Fall and Winter at our house. The big news is I'm pregnant! We are expecting another son in March and we're all excited. I think Seamus was more excited earlier and just wishes it would be over already. When I ask him to come feel the baby kick, he rolls his eyes and says "Mommy, I don't need to feel the baby again." Mommy also wishes it would be over soon. This is hard work for a "mature" lady like me.

Seamus was sick the entire month of November. He started the month with an endoscopy because an x-ray showed a piece of his old g-j tube stuck in his stomach. They went in to remove it but then couldn't find it. However, the breathing tube used for anesthesia seemed to stir up gunk in his lungs because two days later he ended up in the ER with pneumonia. He stayed for a week and then went home on IV antibiotics for another two weeks. After that, he still wasn't better and has been on oral antibiotics hoping to finally kick his cough that he's had since July. He finishes on Christmas Day and hopefully he can get a Christmas miracle and have it be gone for good.

He's been enjoying school a lot this year. He's a big Kindergartner and is really learning a lot. He told me today he can't wait for Christmas break to be over so he can go back to school. We're having a very difficult time trying to find a school for him next year. His current school is just Pre-K and K. Our local elementary school has class sizes of 30-35 which would definitely not work for him because of all the germs.

He's still taking dance class, tap and ballet, and even though he's not the most coordinated, he still loves it. And of course, he still spends hours each day drawing and cutting his "paper dudes". I think art is going to be his thing.

Seamus is very excited about Christmas but I think he's catching on about Santa. He keeps talking about how the Santa he saw this year didn't look like the one from previous years. He's too smart for his own good. Yesterday, he ran around the house and collected all the tissue boxes and drew family portraits on all of them. Then he wrapped them up for Christmas presents and said "Now when they blow their nose, they can look at pictures of their family." He's very thoughtful.

Monday, July 12, 2010

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.

Friday, June 18, 2010

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.

Tuesday, June 15, 2010

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.

Thursday, May 20, 2010

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.

Tuesday, May 18, 2010

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.

Friday, February 5, 2010

Snow bound

Seamus has a serious case of cabin fever...
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Wednesday, February 3, 2010

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.

Thursday, January 21, 2010

The clean out took longer than we expected. He wasn't clear until Saturday after about 24 liters of Golytely. He had a lot of malabsorption that was stuck. We go back to CF clinic tomorrow and have to discuss switching enzymes. He takes 9 Pancrecarb MS4s with meals which is already the highest dose he can take so I don't know what else they can do. He also seems to have caught something while he was in there because he's been coughing and pretty junky sounding.

Seamus has a new hobby, cutting with scissors. Santa brought him a pair of kiddie scissors and they're his favorite present, by far. Seriously, from morning until night, he cuts, cuts, cuts paper "dudes", pictures out of magazines, or anything he can find. He's surprisingly really, really good at it and we spent hours in the hospital drawing and cutting all the Disney and Nick Jr characters.

A funny hospital story: I had to leave the room for a minute so I showed him how to use the call button and told him to call the nurse if he needed her. Apparently, as soon as I left the room, he pressed it and said over the intercom for everyone to hear "Hello, my name is Seamus and I would like some crayons please."

Wednesday, January 13, 2010

Some of the worst words a parent could ever hear (besides "I'm sorry, your baby has Cystic Fibrosis) are from your child begging you to make the pain stop and being completely helpless.

"Please Mommy, make them stop. I said please." It breaks my heart every time we are in the hospital and Seamus pleads with us to stop the doctors/nurses from doing some very painful and scary procedure. We are supposed to protect him and I feel like we are letting him down. I put on a good face and act strong so he won't be as scared but I feel like a piece of his innocence is taken away each time.

Finally after screwing around with home treatments that weren't making any progress, he finally got admitted last night. He is doing okay but is still not clear after 24 hours straight on Golytely.

I was feeling pretty low today and then I thought about all the great things we've been able to do that we wouldn't have if Seamus hadn't been in the hospital 19 times. We've spent hours and hours playing with play dough, drawing pictures, telling silly stories, and laughing. We do these things at home too but while we're here, there are less distractions and more time to just concentrate on each other. Obviously, it's not all fun and games (see paragraph two) but it's not all bad either.

I hope that's what Seamus can remember too when he thinks back on his childhood hospital stays.

Friday, January 8, 2010

Quick update

We did the clean-out on Wednesday which helped a little but his tummy still hurt and he wasn't pooping much. Dr C said he needed an x-ray which we got yesterday afternoon and surprise, surprise, he is still full of poop. He wants us to do another 4 hour clean-out today. I feel like we're spinning our wheels.

Wednesday, January 6, 2010

Clean out

A few days ago, I had a stomachache and I asked Seamus what he does to feel better when his tummy hurts. He patted his tummy and said "I do this". Over the next couple days, I noticed he pats his tummy an awful lot. When I asked him if it hurts, he told me "Mommy, it hurts everyday". We've repeatedly told the doctor who doesn't have much else to say but now that his pooping has definitely decreased too, he wanted us to start a clean out.

We started a home clean out with Golytely this morning but the amount we can do at home safely usually barely scratches the surface for Seamus. It's just a prerequesite so when we get to the ER and they tell us to go home and give him Golytely we can say we already did, now admit him.

We'll see what happens.

Monday, January 4, 2010

Oh boy

My sweet darling angel hit a boy at school today. He was playing superheroes and the other boy was the bad guy. This whole superhero thing is getting out of control.

It's weird because his teacher told us at the beginning of the year it wouldn't surprise her if there was some kind of physical altercation at some point between Seamus and this boy. This little boy was not in the class last year so he didn't know that Seamus was the "Alpha Male" and everybody followed his lead. Seamus wasn't used to sharing the spotlight. I was appalled when the teacher told us this.

When we told her all the girls loved Seamus last year, she said "Well, maybe the 2 year olds.." Again, I was annoyed. My little boy is perfect and charming so of course, the girls would still love him. Well, my charming little toddler has turned into a rough, tough boy always on full speed. It's no surprise the girls in their princess costumes and nail polish want nothing to do with him anymore. Okay, Miss Anne, you know your stuff.

Here are some pictures as promised...

I haven't posted pix in a long time so here are some of the highlights from Halloween, Thanksgiving, Christmas and New Year's (notice the hats and the "dudes").