Wednesday, February 25, 2009

Sunday, February 22, 2009

Seamus' List

Christy at Color Me Healthy had a good idea. Because the CF blogging community has gotten so big, it's hard to keep track of who is dealing with what issues and what treatments everyone is on. She posted a list of a few things about herself to get people caught up. So here is Seamus' list.

1. He was born on September 28, 2005 with Meconium Ileus and spent 10 days in the NICU.

2. Because of amniocentesis, we knew before he was born that he had CF with mutations DeltaF508 and R542X.

4. He has been hospitalized 16 times with GI problems, mostly Distal Intestinal Obstruction Syndrome.

5. At 18 months, he had a pyloroplasty to widen the opening between his stomach and intestines and a g-j tube was placed in hopes of stopping his excessive vomiting and weight loss.

6. A year later, he was still vomiting almost everyday. Another endoscopy was done and he was found to have eosiniphilic esophagitis.

7. He is allergic to milk, soy, beef, and pork.

8. His daily meds are: Digestive - Miralax 1 capful thru g-tube/3x day; Mucomist, 2 mls/2xday, Vitamax 1 ml/2xday, Vitamin D3 15 ml/1 day, Prevacid 30 mg/2x day; Primadophilus Reuteri (probiotic) 1 tsp/1xday; Flovent 110mcg 2 puffs without spacer/2x day; Pancrecarb MS-4 9 with meals and before and after tube feeds. Respiratory - Flovent 44mcg 2 puffs with spacer/2x day; Pulmozyme 2.5 ml neb/1xday; Chest Percussion Therapy via InCourage vest, 30 minutes/2x day.

9. They switched his g-j tube to a g-tube 6 months ago. He gets 8 hour feeds each night and is still struggling with weight gain.

10. Seamus loves being around other kids, probably because he is an only child.

11. He loves pre-school, the Wii, Spiderman and SpongeBob.

12. He is an amazing kid and is always concerned about others. Everyday, he inspires me to be a better person.

13. His favorite joke: "Guess what?" "Chicken Butt!"

Saturday, February 21, 2009

CF Appt

Yesterday, Seamus had his CF appointment. The timing was good because I've been sick all week with a sinus/bronchitis thing and thought it would be good to get him checked out.

The good news is even though his nose has been running like crazy, his lungs sounded fine. Dr P gave us a prescription for antibiotics in case it turns into a "serious" cough. He coughs in the morning a lot but I think that's from post-nasal drip so we haven't filled the prescription, but what if I'm wrong? It's so hard to judge when we should be cautious and give them to him to try to avoid any lung damage at all or hold off on the antibiotics so he's not resistant to them later on in life when he will definitely need them.

The bad news was the dreaded weigh in. He didn't gain any weight again. When he got his feeding tube put in two years ago, he was down to about the 20th percentile and after being on it a few months, he jumped up to about the 80th percentile. He's been slowly heading back down and now he's at the 51st. That's not really bad but that's with being hooked up to a feeding tube eight hours a night! I can't imagine what would have happened if he didn't get it put in. We're going to increase his feeds at night and hope that helps.

Because he's getting taller without gaining any weight, he looks a lot skinnier and pants that used to fit are now falling off of him. Literally. We were in the subway station last week on our museum adventure and he said "Ohhh". I looked down and his pants were around his ankles. The funny thing is I had on an old skirt with an elastic waistband that's all stretched out. Right after Seamus lost his pants, I felt something funny and realized my skirt had fallen down to my knees! And there were people walking right behind me! We went to dinner and I had forgotten about it (I don't how I could) but when we walked back to the station, it happened again! I guess you can call us the Flashing Colemans.

Monday, February 16, 2009

Valentines Day 2009

I woke up this morning with a scratchy throat, feeling achy and congested in my chest and sounding like Scarlett Johannson. I decided to stay home not so much because I felt bad but didn't want to spread anything around my office. It's a weird kind of feeling, it doesn't really hurt to breathe, but it definitely takes more of an effort to take a deep breathe and I'm very phlegmy. I wonder if this is how Seamus feels every day and thinks every one else does too.

We saw a really good movie this weekend, Nick and Norah's Infinite Playlist. On the surface, it's about some teenagers running around New York City looking for an underground concert but really it's about the two main characters looking for more out of life and finding each other. At the end (Spoiler Alert!), they don't end up seeing the concert and Norah says to Nick, "I'm sorry you missed it". He replies happily, "I didn't miss it, this is it." That's my new motto.

We had a very adventure filled weekend. I had a meeting in downtown DC which let out early so James and Seamus met me at the Natural History Museum. Seamus loves it there and we thought he was ready to handle the 3-D Dinosaur Imax show. Well, he disagreed. We went in with our 3-D glasses and as soon as the first meteor came at us, he yelled "This is scary. I should not be here." We left and got a refund and went to the butterfly exhibit instead. It's a big greenhouse with tons of butterflies flying around landing on people. Then we went to the American History Museum and saw the old trains and cars. We ended the day eating at a little French bakery where Seamus ate more food than I've ever seen.

Saturday was Valentines Day and we spent the day decorating cards and going with Ga to the University of Maryland to take pictures to share with her friends back home on her blog. He had celebrated V-Day at school on Thursday and loved the whole idea of it. All day, he kept wishing us all Happy Valentines Day. He told me when the sun went down it would be Valentines Night so then he kept wishing us Happy Valentines Night.

Sunday we went back downtown to the National Building Museum which has a Kid's Building Zone, where Seamus played with huge Legos and other building blocks. Of course, I ran after him with sanitizer all day, but still with all the exposure he's had lately, I'm surprised he's not the one sounding like Scarlett Johannson.

Wednesday, February 11, 2009

Valentines Day E-cards for CF

Alicia at Experiencing Each Moment has a great post today about a fundraiser for CF. Thanks, Alicia!

Today is a beautiful day in MD. The weather is almost 70 and sunny. Seamus is spending the day with his Ga riding his scooter and bike.

Monday, February 9, 2009

Last week was looong. It started out with James being stuck in bed for two days with the stomach flu which he then passed on to me. Seamus may have also gotten it but it's so hard to tell if it was a bug or his GI stuff acting up. He never really complained, but he never does. He's had a runny nose all week so we're crossing our fingers it doesn't turn into a cough.

Tuesday was pajama day at school and Thursday was picture day. On Friday, he had a Wii date with his friend Zoe. It's like a drug he wants to share with all his friends.

Saturday night was the big Poker tournament for Seamus' nursery school. I've seen poker on tv but have never played so I wasn't expecting too much. Guess what? I won the whole thing!! Seamus was so impressed and loves the trophy.

Sunday we went to a birthday party with all his friends from school at "Pump It Up", one of those places with all the moon bounces and slides. Seamus absolutely loved it but I spent my time being a nervous wreck chasing him around with hand sanitizer.

I guess I'm a little down today because being in those situations is always a reminder to me that Seamus is different than most kids. He can't just run and play without worrying about germs and he couldn't have the pizza and cake because of his food allergies. Also, parents were talking about summer camp at the nursery school and I don't think Seamus can do that either. They stay out all day playing in the sand box and water table which are both breeding grounds for mold. And forget about getting dehydrated and running around in a bathing suit with his feeding tube sticking out.

I'm sorry, I've said this blog is supposed to be about recording the good times but for some reason today, I'm having a hard time with that. I really do recognize how lucky I am. Seamus couldn't be a happier little kid and once I get home and see him, things will be better. They always are.


I'm planning on writing a long post later but Google Alert brought up this story today and I had to share it. Stories like this always set me off imagining the future Seamus will have. I'd better warn you, it made me cry. (Sorry, Courtney)

Cystic fibrosis brought them together, now keeps them apart

Tuesday, February 3, 2009

Garran Update

Garran had his transplant surgery last night and things are going very well. His mom posted they were going to have him up and walking this afternoon.

I've also been thinking a lot about the grieving donor family. Someone lost their little daughter or son yesterday. I hope it's possible to find some peace in knowing another small child was saved. As a mother of a child who one day may need a transplant, I thank you from the bottom of my heart.

Monday, February 2, 2009


Garran is a great 7 year old kid who has been very sick and on the lung transplant list since last July. Today they got the call and are heading to the hospital right now!

Please pray and think good thoughts for him and his family today.

So Proud

I know I brag a lot about Seamus, but hey, it's my blog. Today, James and I met with Miss Terri for a parent teacher conference and now I feel like I'm not just a biased mother.

Miss Terri says Seamus is very independent and figures things out on his own. There is not a puzzle in the class that he has not mastered. He is always willing to help the other kids and Miss Terri, and he is great friends with all of them. If someone is hurt or upset, he's the first one there. He is especially popular with the girls because he is so caring and gentle, unlike most of the other boys. They fight over who can hug him and sit next to him at circle time. (We discussed the germ issue and she's already on it.) He can also count backwards from 10 and knows all his letters and numbers.

I'm so proud of him I could burst. Because he's an only child, I'm especially happy that he can make friends and get along with others so easily. That will be very important growing up. But I'm most proud that he is so caring and kindharted. CF is a horrible disease, but I believe a big part of who he is today has come from all that he has gone through in the past three years. Being in the hospital so much and seeing other sick kids has given him a different perspective than most kids.

I love you, Seammy Doo, so so much and I can't believe how lucky I am.