Liverversary

I can't believe I haven't posted since the transplant! On May 13, 2014 at 8:30 PM, as I was making t-shirts for the annual CF Great Strides Walk and Seamus was taking a bath, we got the call.

"Julie, we think we have a liver for Seamus. Can you get to Philadelphia right now?"

Those words changed our life forever. We all jumped in the car and took off, leaving half of our pre-packed luggage behind. The 3 hour ride to Philadelphia was the longest trip of my life.

They had told us another child waiting for a transplant was also called and once they examined the liver, they would determine whether Seamus or the other child was the best match. I know many people waiting for organs go through many "dry-runs" before actually having their transplant so I was trying to not get too excited, but it was nearly impossible. At 4:30 AM, my cell rang and I heard "It's a go!"

Within an hour, Seamus was wheeled away into the OR with a smile on his face and our family went to the waiting room for a very long wait. Through the 8 hour period, we got many updates that things were going  well and finally the surgeon came out to tell us it was done. She said they were surprised at how awful his old liver looked because he always seemed in good spirits and didn't complain. I told her we've been hearing that from doctors his whole life. She said he was very lucky to get the new liver when he did.

His recovery went well, with a few bumps along the way, mainly with his GI system getting used to the new liver but he quickly adjusted and after two weeks in the hospital, we went to stay at the Gift of Life House for another week to be close for follow-up appointments. On June 3rd, 2014, we headed home.

This past year has been great. Seamus' liver has been healthy and he is back to being an active kid. He's gained more than 13 pounds and has gotten 3 inches taller. He hardly missed any school this year and he made the Honor Roll all semesters.

On his first year liverversary, I wrote the letter below to his donor's family thanking them for this wonderful gift. The Gift of Life House will send it to them and I'm hoping to hear back.

Dear Donor Family-

I am the mother of a wonderful nine year old boy who is alive today because of the precious gift that he received from your loved one. I will never be able to express my gratitude and thankfulness enough to your family for such a selfless act in your time of grief. I think about your loved one and your family every day and I am so sorry for your loss.

My son, Seamus, received his new liver after waiting ten months on the transplant list. His health had continued to decline until he was very sick and unable to attend school full-time. He wasn’t able to play with his little brother or walk very far without the aid of a wheel chair because he was so exhausted and in pain.

Originally, it was planned that I would donate part of my liver to him but because of an anatomical complication, I was unable to be the donor. This was a huge disappointment for our family. After that, he would ask me every day if that would be the day he would get “the call” and as time went on, we were all getting discouraged and were afraid he wouldn’t get it in time.

I am so happy to say that now he is an active little boy who runs around and loves to ride his bike and scooter.  He takes karate class and is back in school full-time in the 4^th grade. His liver is functioning extremely well and the doctors couldn’t be happier with his progress.

Seamus plans on being a pediatric anesthesiologist when he grows up and I know he will accomplish his dream. That wouldn’t be possible without the enormous gift he received last May. I do not have the words to fully convey how much it means to my husband and me to see him have that chance.

If you would like to contact our family and find out more about Seamus, we would love to talk with you. I know it may be difficult for you right now, so if you are not comfortable yet, I understand. Whenever you are able, feel free to contact us.

With sincere gratitude-

Julie

Update

So let's get it out of the way... After realizing on-line Weight Watchers just wasn't going to cut it for me, I joined Jenny Craig. My life is so crazy right now, I really need something very structured so I don't have to make any more decisions than I already do. After one week, I lost 3.6 pounds. I had lost a few before so total loss is 7.3. Current BMI - 33.7.

Mackey had his second birthday a few weeks ago. The poor guy really gets the short end of the stick. It was a low key event at our house but he had a big celebration at daycare. He was thrilled to get presents so I don't think he minded not having a party. I will write a post strictly about Mackey soon. He is growing up so fast and I want to make sure I record some of the wonderful things he does before I forget.

Some of Seamus' symptoms seem to be changing so we spent 7 hours at CF and GI clinic on Friday and got x-rays and an ultrasound done. The concern was he might be developing ascites which is fluid build-up in the abdomen because the pressure has increased so much in the liver. The doc called us Sunday night, which is usually not a good thing, to tell us there was no sign of fluid but he has lots of trapped gas and they can't figure out why. He had some stool but isn't obstructed. He constantly looks like an 8th month pregnant woman. We also got definitive proof of the cirrhosis which up to this point they had assumed but hadn't proven. This doctor has only been following Seamus for about a year and I think he's finally starting to understand the uniqueness of the situation. He admitted that Seamus is "a mystery" and his liver (and GI) disease is not following the path of most CF patients. We had another long discussion about transplant on Friday and he still believes Seamus isn't ready but we are concerned about waiting too long because he could become too sick to be eligible.

The best part of the weekend was meeting with the Make-A-Wish volunteers. They had lots of questions for Seamus about his likes and interests and really listened to his request. He has a very specific request so we are hoping they are able to do it. He makes to go to the Activision offices where they make the Skylanders video game and create his own character called Man-atee. It's half man, half manatee. The face will be his face. He's come up with all the powers he has and whole story line. So hopefully, he could actually work with the designers to create it and incorporate it into the game, at least a version just for hem. My biggest concern is they wouldn't fully understand what he wanted and would just send us out to meet with the designers who would give us a tour and just show him how they work. I think he would be very upset if we went all the way there but he couldn't make Man-atee but it may be too much work for them.

He has a second wish, just in case, which is going to the Disney resort in Hawaii. Obviously, James and I wouldn't mind if that wish was granted but he really has his heart set on the first one so I hope they can do it or at least some comparable version of it.

So we're still waiting for culture results and more liver blood work to come back but currently Seamus is feeling good which is the most we can ask for. I'm hoping we get that huge snowstorm everyone is talking about so we can all stay home together and snuggle.

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.

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.

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

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.

Why?

We were looking at the beautiful pictures of our bloggy friend, Natalia, and her baby, Scarlett, yesterday. I pointed to Natalia and said she has CF like you.

Seamus asked "Does the baby have CF too?"

"No, just the Mommy."

"Why?"

"Some people have it and some people don't, just like Daddy and I don't."

"Do I still have CF?"

"Yes, Honey."

"Why?"

This is getting really hard.

Not much to report

I've been very bad at updating lately. There hasn't been a lot to say. Seamus seems to be feeling better but still not 100%. We went back to the GI doc on Friday and the latest news is he has SIBO, Small Intestinal Bacteria Overgrowth. It's caused by malabsorbtion and slow gastric emptying. It basically causes a lot of gas, discomfort and stomach distention. He's started on two different antibiotics which he'll cycle through indefinitely, hoping he doesn't get resistant to either.

All of this is starting to affect him more than just physically. At the doctor's office, James and Seamus were reading a book about pooping on the potty. Half way through Seamus asked him to stop and told James it makes him sad he can't poop like other kids. And last weekend, when we asked him to go to the pool, he kept crying and saying he didn't want to go. Later he told me, "I want to go to the pool, but I just don't feel like it."

We have had some fun times in between the down times. We stumbled across a really cute little Mom and Pop amusement park, Adventure Park USA, a week ago. We were on our way to somewhere else but that looked more fun, so we stopped. It's in the style of an old Western town. Seamus has been calling it the Cowboy Town.

Seamus and James went to the Baltimore Zoo last week. Seamus was very enamored with the chimpanzees and baby elephant and told me all about it as we snuggled in bed that night. He also felt up to two playdates and a birthday party this weekend so that was a great improvement.

Seamus still amazes me and everyone who meets him everyday. No matter what he goes through, he's always ready with hugs and kisses. I'm so proud of him.

Back to Normal

Seamus came home Wednesday evening and has been just relaxing since. He had a CF clinic appointment on Friday. I had missed so much work that I couldn't go so James took him alone. He's gained a pound and a half in 2 months which is great considering he hadn't eaten anything for 4 days while he was in the hospital. His coughing has increased a little probably due to the beginning of an ear infection so we won't be going to the pool today. After the appointment, we always like to take Seamus on an "adventure" so they went to see "Ice Age 3". Seamus gave it a thumbs up.

We may go to the Kenilworth Aquatic Gardens today. It's a beautiful place right in the middle of an urban area that most people don't know exists. He can run around but not be around a lot of people which I think is what he needs.

Unexpected

Yesterday, Seamus went to the GI doc to have his tube looked at. It is infected so they took a swab to culture. But the big shock was his weight has gone down again. The last time he was weighed at GI clinic was 6 months ago and he's back to the same weight. Considering he already has a feeding tube, it seriously concerned Dr. C.

He gave me the serious talk about how his weight will affect his lifespan and he has to grow. I knew all those things but it just threw me for a loop because I walked in there expecting him to just prescribe some new cream not sit with him and the nutritionist for half an hour coming up with a new game plan.

So the end result is we have to increase his feedings by two hours and also increase the hourly amount. We have to work that around his 3 Miralax doses he gets through his tube throughout the day. We tried it last night so he got Miralax at high speed, then his feeds for 10 hours, then another Miralax dose at high speed this morning. This all resulted in a big vomit, which kinda defeats the entire purpose.

And we haven't even figured out how to handle the enzymes. He gets 9 enzymes before his feed and 9 after but now since he's getting more food, we may have to wake him up in the middle of the night to give more. I'm afraid if we don't, his stools will get even stickier and he'll end up with even more blockages, which again defeats the whole purpose.

Ugg, I'm just so frustrated. We're going to have to tweak it each day until we figure it out. I'm also worried because I think Seamus started understanding some of the scary stuff yesterday. He could tell I was upset and he even though he didn't understand all the dire stuff Dr C was saying, he seemed uneasy too.

Pool Plan

First, I want to thank Natalia for her very honest and helpful comments on my last post. It confirmed a lot of what I already thought and made me feel better about being so obsessive. I think sometimes the doctors are afraid be brutally honest with the new CF families because they think we'll freak out. It's a fine line between letting him be a "normal" kid and keeping him safe and sometimes it's hard to do both.

We've come up with a plan for the pool. We found out the girl is 11 and has active MRSA so we are going to try to go to the pool in the morning during Toddler swim when she won't be there. If we are there when she is there, Seamus will go with James to the changing/bathroom area and won't go into the ladies room. Since he spends most of his time in the wading pool (he calls it the Navy pool) or the little kids' playground, he shouldn't be exposed to her.

Other than hanging out at the pool, we didn't do much else this weekend. Seamus hasn't been feeling very good and hasn't been up to his normal crazy antics so it's been pretty calm around here.

Sensitive question

We joined a pool today and spent all afternoon there. It's a great place, very laid back, not "pool club" like at all. More like just a big party in someone's back yard with music, grills, and pools.

I was wearing my Great Strides t-shirt and when I walked in, a girl about 10 saw it and said "I like your shirt." I said "Thanks, my son has CF" and she said "Me, too." I was a little surprised and I didn't really know how to respond. This has happened to me on a couple of occasions when Seamus has been with me and my first reaction is to want to grab him and pull him away from them, but of course I don't.

And what do you say to that? "Oh, I'm sorry to hear that" or "Wow, what a coincidence?" What I really want to say is "What did your last culture grow?" I'm mainly just worried about cepacia but how do you find that out without sounding rude? And she probably wants to know what Seamus is growing too but I can't just blurt it out. Seamus is going to run into this girl all summer and it's always going to be on my mind.

Great Strides and Faeries

Our Great Strides Walk was great! Team Go Seamus Go! had about 30 people walk and made $3400. The weather started out a little shaky but actually ended up being a nice day. Thanks again to everyone who donated and/or walked with us.

The only issue I had was it was at a park with a big playground and all the kids were playing together. They had stickers for the kids with CF to wear so we could keep them apart but Seamus was about the only one wearing one. I mentioned being worried to another CF mom and she acted like I was totally overreacting. Do they take precautions at other GS walks and was I being too concerned?

Here are some pix from the day:









Yesterday, we spent the day at the Maryland Faerie Festival. Very interesting, sort of like a mini Renaissance Fair. Seamus had a blast and really enjoyed talking with all the different people. And I do mean different. My first reaction when seeing some of them was, truthfully, not the most open minded but Seamus is so open to everyone, it really made me stop and think. They're not hurting anybody, so what if they're grown men and women dressed like elves and fairies.

Mothers Day and Littlest Heroes

I had a great Mother's Day yesterday. We met with Mary Kate McKenna, a fantastic photographer who did Seamus' Littlest Heroes photo shoot. If anyone needs a photographer in the DC/Frederick MD area, I highly recommend her. Here are just some of the great pix she took. Seamus absolutely loved it and was vogueing it up. I think I saw a few "Blue Steel" moments.

Tonight, we had our fundraiser at Franklin's. It went well, we'll find out tomorrow how much we've raised. It stinks that his nursery school is doing a fundraiser at the same restaurant tomorrow so lots of his classmates didn't come tonight but I think it was successful anyway.

Clinic visit

Woo Hoo! Clinic went great this morning. Seamus has gained a pound and grown an inch! So now he's at 41st percntile for height and 66th for weight which is an overall BMI of 78. Can't ask for better than that. His lungs sound good and hopefully his culture will come back clean since he's been on Omniceff for the last week because he was having increased cough.

We talked a little about his GI problems these last couple of weeks but the CF doctors really don't have much to say about that. Seamus' GI issues are so extreme that they haven't dealt with anyone like him so they leave it up to the GI folks. But today he seems to be pain free and is pooping so we're not complaining.

A funny story:
Seamus is a big fan of classic rock music. Often while riding in the car, he asks me to stop the radio on a station that plays lots of AC/DC, Cars, Eagles, etc and we usually rock out to a few songs. This morning we sang along with Paul McCartney and Wings. A while later, Seamus told me his favoite song was "Bad Dollar Rug". It took me awhile but then I realized that's a much better title than "Band on the Run."

Again with the poop

Warning: Lots of poop talk ahead

Over the past couple of weeks, it's been evident that Seamus is heading down the blockage road again even with three caps of Miralax every day. After a few days of crying when he went poop and vomiting huge gobs of mucus yesterday, we knew it was time to get cleaned out. He's such a trooper and never complains and when we went in for x-rays yesterday, he was a little charmer. Last night in bed, I thanked him for being such a good boy and he said it was the best part of the day. That definitely makes it easier on me, knowing he's not afraid or upset.

So he isn't completely blocked but he does have a significant back-up. His stools are extremely mucusy and sticky even by CF standards so any back-up is like glue and doesn't clear out easily. We started with a home treatment of a liter of Go-lytely, which normally is a huge amount, but not for my Super Sticky Seamus. It barely touched it. We're going to do another round tomorrow but if that doesn't work, we'll probably end up going in to the hospital. They basically do the same thing we do with the Go-lytely but they can do larger doses and keep in eye on his electrolytes and give him more x-rays to see how it's progressing.

Phoenix's mom, Angela, posted this video today. Please say a prayer and think good thoughts for Angela today. She's been having a rough time lately. She's such a special person and does so much for the CF cause. When we first found out about Seamus' diagnosis, someone gave me this poem and I've always loved it. I love Holland more than I could ever have imagined.

Easter 2009 and Fundraiser

It was nice to have a little break from the CF world and just concentrate on toddler life. We had a nice relaxing Easter weekend. Saturday, we went to a birthday party for Seamus' friend, Brigid, and had an Easter egg hunt. Then we came home and decorated our own eggs which Seamus loved. Sunday, the Easter Bunny made Seamus work for his jellybeansby leaving him clues like Blues Clues. He came downstairs and found the first egg with a picture inside of the washing machine. At the washing machine, he found another egg with a picture of the computer. Then at the computer, he found an egg with a picture of the tv. Finally, under the tv he found his basket. He got a big kick out of figuring it out. Later in the day, we all went to the park and had a picnic and rode the carousel and train.

Today, we got some great news! One of the local restaurants in our area, Franklin's in Hyattsville, has agreed to do a CF fundraiser for Team Go Seamus Go! It's a great place with microbrew and yummy food, especially the potpie. It's going to be on May 11th. They will donate 20% of your bill to CF all day. They also have a really fun general store with all kinds of funny gifts, jewelry, wine, etc all of which will be included in the fundraiser! I'll post more details later but if you're in the Hyattsville MD area on May 11th, stop by.

Taking a Break

Thanks to Lil' Chris's Mom at A Cure for Lil Chris and Courtney at The Tale of Olivia's 65 Roses for this blog award:

It's for having a blog that "shows great attitude or gratitude". Truthfully, these days I'm having a difficult time with that. The internet is a double edged sword. On the one hand, I've found so much support and comfort in the CF community but on the other hand, some of the things I read are so sad that it's hard to stay hopeful. This week, for some reason, has been particularly hard because there has been news of several young, very young, people with CF who have lost their battle. I'm trying to stay strong for Seamus but it's very hard.

I've decided to take a couple days off from blogging and reading anything related to CF. I know there is a lot more to our life than this disease and I need to clear my head and think about those other things.