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."

I'm back

I'm just going to pretend it hasn't been two months since I last posted and start the New Year off right.

Our holidays were very nice. We went down to North Carolina and saw lots of people. We saw my brother and his family who we haven't seen in more than a year. Seamus adores his cousins, Alex and Cassidy. We celebrated Christmas and Alex's birthday the week before actual Christmas day. We spent some time with James' sister Carol too whom we hadn't seen in a long time.

We visited with our old friends Trish and Joe and their kids. They are much older than Seamus but are they were so nice to play with him for hours. At the end of the day, he send "Mommy, this is a great play date!"

Santa was nice to Seamus. The big present was Pluto (guess who named him?), our new doggie. He's the sweetest thing but he came with a long list of unexpected ailments: heartworms, kennel cough, vomiting, and enlarged prostate. We're working on getting him better.

Uncle Rick came to help us celebrate New Years. Seamus always loves to see him. We spent New Years Eve playing the Dr Seuss ABC Stretching Game, which is like Twister for little folks, even though most of us are not so little. And of course, we made hats which is the tradition in our house for any special occasion.

Seamus' newest obsession is Shrek. He asked for Shrek toys for Christmas but Santa had a very hard time finding any so instead he got the first two Shrek movies. We've discovered Seamus is a very good impersonator. He does a mean Shrek walking around the house saying "dawn-kay" and you've never heard anything as cute as "Jingle Bells" in a little Scottish accent.

Our newest hobby is drawing and cutting out all kinds of paper "dudes". We've made hundreds, everyone from Santa to Buzz Lightyear to all the kids in his class. There is a whole sub-genre of super heroes like Super Sponge Bob, Party Man (whose super power is throwing great parties), and even Super Pillsbury Dough Boy. Today, we made Dancing Man, whose ability is to change bad guys into dancers and Bow Bear who is a bear but can change into a bee and turns bad guys into logs when she stings them.

Reading is going really well. He's picking up lots of words and is starting working on writing his letters. We still do words-of-the-day and his vocabulary is pretty impressive, if I say so myself. We were playing a game the other day that I found frustrating and I said "This is maddening". Later that night he was getting annoyed with something and told me it was "bald on the head, that means frustrating Mommy."

He started taking a tap/ballet class. He's the only boy with 14 girls but he doesn't seem to mind. Some days I can tell it takes a lot out of him but he has fun.

His health has been relatively good. We've been really lucky respiratory-wise, no bad colds to speak of but he's gone back and forth a lot to the GI doc and had another scope. Even though he's in pain, they couldn't find anything new so he's still on the same regimen. Everyday it's a struggle with pooping and we know it can't go on like this. It shouldn't have to always hurt and you can't imagine how hard it is to have nothing comforting to say when he says "It hurts Mommy."

I have lots of pictures which I'll update soon, I promise.

Happy Birthday #4

My Darling Seamus,

Today you turn four, such a big boy! Sometimes I think the time has flown by but when I think back to all you have gone through, I can hardly believe it has fit into four little years.

This year has been another eventful one. You have learned so much and have matured in so many ways. Everyday you show us, beyond our wildest imaginations, how brave and strong you are. On days that I do not feel very brave or very strong, you are my inspiration to keep fighting even when it seems impossible.

This year you have made leaps in your education. You have mastered letters and numbers and are taking the first steps in reading. Your imagination and curiosity are immense and everyday you pick a new "word of the day" about something you're interested in.

You continue to be the most empathetic child I've ever known. Whether it's comforting Ga or stoppping to help the kids at soccer class who have fallen, you are always thinking about how others feel.

This is one of our favorite verses from one of our favorite books:

"If you'd never been born, well what would you be?
You might be a fish! Or a toad in a tree!
You might be a door knob! Or three baked potatoes!
You might be a bag full of hard green tomatoes!
Or worse than all that... why, you might be a
WASN'T!
A Wasn't has no fun at all. No, he doesn't.
A Wasn't just isn't. He just isn't present.
But you... you ARE YOU! And now, isn't that pleasant!"
-- Dr. Seuss, from Happy Birthday To You!

I love you, my little porcupine and I am so glad you are you. You will always be my bestest boy.
Love-
Mommy

New Song

Seamus' latest favorite song:

Was a farmer had a dog
Underpants was his name-o
U-N-DER P-A-NTS
U-N-DER P-A-NTS
and Underpants was his name-o

I'm not kidding, we're seriously obsessed with toilet stuff in this house.

Jokes

Seamus loves jokes. The "Guess What? Chicken Butt!" joke has now turned into penguin butt, rhinoceros butt, and every other kind of animal butt.

His other favorite thing to repeat over and over (not really a joke but funny): "Fuzzy Wuzzy was a bear. Fuzzy Wuzzy had no hair. Fuzzy Wuzzy wasn't fuzzy, was he?"

Tonight Uncle Woody called and told him a good one: "Why was six afraid of seven?" "Because seven eight nine." (Say it out loud)

Seamus rolled on the floor. His response was "I want to tell you the banana pants joke. Why was the apple afraid of the banana? Because he saw the dinosaur." No mention of pants. Well, he's trying.

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?

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.

From the Brain of Seamus

"I have a brain."

"You sure do, honey, a big brain."

"If somebody climbed into my ear, they could go for a ride on my brain."

Can't argue with that.

Happy Birthday to You

My Darling Seamus-

Today you turn three! You are such a big boy now, steadily gaining weight and growing taller despite many obstacles this past year. You have started nursery school and love being with all your friends. Miss Terri says you are a very good student.

This year, you have learned so much. You can count and say all your colors in both English and Spanish. Chinese is next. You love doing jigsaw puzzles and playing with your trains. You've even figured out how to use the the computer.

You walk around singing all day and music class is one of your favorite activities of the week. Rhyming is another favorite thing to do. You can amuse yourself for hours on end coming up with new rhymes, some of them very clever.

Socially, you have grown so much. Your favorite thing is to play with other kids and you are very good at making friends. And what an independent little boy you are. You have no problem leaving Mommy or Daddy when we drop you off for school or being in a group of strangers. And even though you love being with people, you do so well playing by yourself with all your toy friends.

You are wise beyond your years, my love. Often, you say to me "Mommy, are you frustrated?" or "Do you need to talk to someone?" And you are always right.

We are so proud of you, my little pumpkin pie. You are my bestest boy.
Love-
Mommy

Darn Mr Brown

It's been raining here almost every day for the past couple of weeks and we've had some pretty crazy thunderstorms. Today, Seamus came down from his nap and as soon as he saw the clouds, he smacked his forehead and said "Oh, the Heck. Mr Brown again?" For those of you with kids, you probably know that Mr Brown, of Dr Seuss fame, makes thunder and lightning noises. Not long after that, we lost power and just now, after 2 and a half hours, it came back on. Seamus and I have been having fun playing in the dark.

Uncle Woody, Alex and Cassidy came for a visit this weekend. They brought lots of presents, just because they're so nice. Seamus had a great time playing bubbles, squirt guns, and reading the new books they gave him. I have a good video of them playing bubbles at Ga's house but for some reason I can't post it right now.

They also came with us to our last music class. Seamus did a mean shaker performance and got to dance his last Teddy bear song. After class, the class went to McDonald's and Seamus didn't even mind that he couldn't eat anything. He was too busy running around playing monsters with Sam, Isabelle and Gigi.

Now we're on to swimming lessons. He started on Saturday and loved it. He really got a workout and after half an hour he wanted to get out and was exhausted. I think he's on the verge of getting something or never really got over the ear infections, because his energy level has not been the usual full speed craziness lately. Also last night he told me he felt sick and when I asked where he pointed to his tummy.

Eerie

Alright, so I think Seamus is psychic.

Yesterday morning, I walked into his room and he was in his crib wide awake singing "Alex and Cassidy are coming to visit, Uncle Woody is coming. I'm going to play with them." That is my brother and his kids who live in NC who he hasn't seen since Christmas. They actually are coming to visit this weekend but James nor I have mentioned it to him at all. He is still talking about them coming even today.

Then this morning, when I went in there, he was wide awake and said "Mommy, I'm talking about animals. Tigers and turtles and sheep and cows and turtles and roosters and turtles. They are having a race." We discussed who is fast and who is slow and who would probably win the race. Later in the morning during his treatments, he was watching "Super Why" which is a great show on PBS about spelling and reading. The book that was on was "The Tortoise and the Hare" which is about... that's right, turtles in races. How weird is that?

Good week

This week was a good one. Seamus went in for his endoscopy and tube replacement on Wednesday and the doctor's initial thought was that things are looking much better than his last one in September. We still have to get the biopsy results.

He is only throwing up occasionally and is eating like crazy so they think maybe eventually he won't need the feeding tube. We switched to only using the part of the feeding tube that goes into his stomach instead of the part that goes into his intestines which is what he have been using for the last year. So far his stomach seems to be handling it fine.

Here's a video of Seamus. He really did finish the whole thing but I ran out of space on the memory card. That will make sense once you view it.

At gymnastics this week, Miss Patty demonstrated the latest routine the kids were supposed to master on the uneven parallel bars. They were to jump onto the lower bar on their tummy and then grab the top bar and move onto their feet on the lower bar. Then they were supposed to walk the length of the bar and switch their hands around and turn around and walk back down the bar the other way. (Did I mention this is a class of 2 year olds?)

I've been talking about how brave Seamus has become but he's no fool. When Miss Patty finished, he yelled "I am NOT going to do that!!" Who could blame him? People sitting way up in the bleachers started laughing.

Seamus has picked up another talent. He loves music and he has a weird ability to hear a song and name the instruments playing. We'll be listening to the radio and he'll say "That's the violin" or "That's the guitar". He can even do it with less common instruments like the tuba or trumpet. He's not always correct, but usually he's dead on. I see music lessons in the near future.

I don't know if I should mention this because I don't want to jinx it, but Seamus' health has been really good lately. He hasn't thrown up in a week and a half and he's been eating like a horse. He's still scheduled for an endoscopy and tube replacement next week but I think they may have finally hit on the right treatment.