Update

Seamus is very excited for Christmas. It's really fun because it's the first year he's really understood. We saw Santa last week at Daddy's Holiday Market and Seamus was prepared:

Santa: What would you like for Christmas?
Seamus: Dora stuff and Diego stuff and Boots stuff and train stuff and baby doll stuff and book stuff...

He has made friends with all the Christmas tree ornaments. From the living room we often hear a little voice, "Are you okay?", "I'm okay", "You're my friend". It's not unusual to find a little ornament or two in his crib that he's brought up for a nap.

Seamus made his first snowman with Daddy. It was about a foot tall but he was so proud of it.




Jumping has become a new passion. He can now get air under his feet when he jumps which he finds very exciting so he must practice every chance he gets. Dancing is still one of his favorite hobbies too. He has a new book, Ted and Friends, which has a pig who does the jig so Seamus now jigs.

He spent another night in the hospital last weekend but he made the most of it. He had a really big room all to himself so there was lots of room for dancing and jumping (of course, after he was feeling better). While we were waiting to be discharged, the whole Coleman family shared a nice dance at Seamus' request. Mommy and Daddy had to dance holding hands while Seamus did a jig around us. The hospital staff kept walking past and laughing, but we couldn't care less. I'm going to hold onto that memory for a long time.

Well, it was only a matter of time. I was being very good at keeping up with the blog but I knew I couldn't keep it up for long.

Things have been hectic around here. Seamus had a very nice birthday party with lots of good friends. Mommy also celebrated her birthday, although a little quieter. We also have had some visitors, Uncle Rick and Grandpa. We were glad they could spend a few days with us.

There were a couple of hospital visits in the past few weeks, one for Mommy and one for Seamus. We're both doing okay although Seamus picked up a cold during his stay. A cold for him is a pretty big deal so we're watching it carefully.

The biggest thing we've been up to is getting the house ready for Ga and Pa. Seamus and I are flying up to Rochester this weekend and helping them with their big move down to Maryland. There has been lots of cleaning out basements and closets and creating art work in preparation. We are all very excited but a little concerned about the close quarters we'll be sharing until the new addition is built. It's going to be an adventure!

Happy Birthday to You!

My Darling Seamus-

Today you turn two, such a big boy, your age no longer measured in months but years.

This past year has been an exciting one. You are an absorbent little sponge and have learned so much. This year you've learned to walk, count, and say your A-B-C's. Also you've learned your colors, shapes and every instrument in the orchestra. You tell jokes and stories and sing all kinds of songs.

But more importantly, because of all that you've been through, you've learned compassion and empathy. When Mommy is upset about something, you let me know that things will be okay and are always ready with a gentle stroke for my cheek or a funny raspberry on my belly. You understand how Izzy feels when he goes to the vet and are especially gentle with him. Sometimes you look at me with so much love in your eyes, I literally can't breathe.

You are very stubborn and persistent, just like both Mommy and Daddy. That quality has served you well. Whether it's never giving up until you get a puzzle piece to fit, or dealing with your daily health issues, you're a fighter and I'm so proud of you.

I love you, my little porcupine. You are my bestest boy.
Love-
Mommy

Seamus is getting a real sense of humor. Certain things just strike him as hilarious. Like watching Mommy spit while she brushes her teeth or blowing raspberries on every part of Mommy and Daddy's body. The other day he kept repeating the phrase "I ate" and giggling like a madman. I think he put together that the word eight/ate has two different meanings. I love his laugh. He puts his whole heart into it and really means it.

The past two weekends, we've gone to two different music festivals and Seamus was the star of the show. At the Takoma Park Folk Festival, the drummer asked him to come up and play the bongo drums with him. He had a blast and continued to entertain the crowd with a few dance numbers. Saturday we went to the Johnny Appleseed Festival and again he thrilled the audience with some Bluegrass moves. He can't get enough music, any kind. He loves to sing, especially the Seamus song. Normally, when he sings he just belts it out but when he sings his song, he gets a very serious tone like he knows it deserves more respect.

I haven't been in the mood much lately to post. We've had a few hospital visits, one very upsetting one. But at least now we have the biopsy results from the endoscopy and it looks like Seamus has more severe food allergies. They already knew about the milk and soy so now we go back to the allergist next week and try to figure what else he could be allergic to. It's slow progress but at least we feel like we're moving forward finally.

Sweet

Seamus from the backseat of the car today: "Mommy and Daddy, I'm glad you're here."

Seamus, we're glad too.

Sesame Pix

We finally downloaded the pictures from Sesame Place. Here are a few and I'll post the link to the photo album of the others when I finally get to it.

Cows and Merry-Go-Rounds

We had a really nice weekend. James is back in school so Seamus and I had our own adventures while he studied.

On Saturday, we went to Wheaton Park where they have an old carousel and miniature train ride. He loves it there. Before going, he talked about the horses on the Merry-Go-Round but after seeing them up close, we ended up on the (non-moving) Sleigh. That up and down thing is pretty scary.

The train ride goes through the woods, over a bridge and through a tunnel so it's pretty exciting. The big kids scream in the tunnel which Seamus was not prepared for and ended up in tears, but he bounced right back as soon as we hit the playground. Apparently, that playground is way better than the one down the street from our house because that's all he would talk about the rest of the day.

We headed out to the Old Maryland Farm in Upper Marlboro on Sunday. We had prepared for it by talking about cows, pigs, and horses but it did not compare to the actual thing! The farm had all kinds of animals, enough to make a 2 year old squeal with delight, repeatedly. He fed the bunnies, chickens and horse and got to pet the sheep and goat. There were also turkeys, peacocks, cows, donkeys and even two llamas! Alas, there were no pigs, just an empty pen. But for some reason, Seamus thinks we saw piggies because he keeps talking about them. I'm not sure if it's because we saw pictures of them on the sign or he was using his imagination, like when he told me there were flying frogs outside the window last night.

They also have a carousel and train ride. Seamus wasn't in the mood for the train but we did take another sleigh ride around the Merry-Go-Round.

We had a really nice weekend.

The Seamus Song

Seamus is now officially "Famous Seamus". He has a song written about him.

There is a great organization called Songs of Love that writes songs for sick kids. They ask you personal information like their favorite foods, things to do, people, etc and then they incorporate it into a song written especially for them.

I love Seamus', it's perfect for him. He loves it too and screams when he hears it (in a good way).

If anyone wants to hear it, you can download it from their website. They ask for a small donation, which can be as small as a dollar. Go to www.songsoflove.org and click on the Family and Friends Song Download link. You have to type in Coleman and then the number 12921.

Here are the lyrics (some of you should watch for a shout out):

Seamus, you're so much fun
So full of love
You're from Heaven above
Seamus, you're a shining star
You fill our hearts
We love you Seamus

Let's take a walk on Sesame Street
Elmo's waiting, it's Seamus he wants to meet
Lets go on an adventure with Dora and Diego
There'll be lots of bubbles everywhere we go

Seamus, you're so much fun
So full of love
You're from Heaven above
Seamus, you're a shining star
You fill our hearts
We love you Seamus

Ga and Pa love to push you on the swing
Uncles Rick and Woody are bringing the wagon
Come on, let's walk, walk like a penguin
Here comes Stephie, she's bringing the bacon (Seamus' favorite line)

Come on, let's splash. It's fun to get wet
Henry and Izzy are bringing the balls to play with

Seamus, you're so much fun
So full of love
You're from Heaven above
Seamus, you're a shining star
You fill our hearts
We love you Seamus

If any of you know any other sick children that you think would like a song, there is a form to fill out on the website. I highly recommend it.

Shakin' Bacon

Tonight Seamus fell asleep in the middle of his treatments. I'm not talking about the relaxing breathing treatment. It was during Shakin' Bacon. He wears a vest which fills up with air and shakes him up like a Mexican jumping bean. It breaks up the mucous in his lungs and it is extremely loud. Not only that, I was vacuuming and Happy Feet was on the DVD full blast. So I know he was exhausted.

I think it was in a good way. Our neighbors, William and Elita, watch Seamus in the afternoons so James has some time to do his schoolwork or work on his Farmers' Market things. They have a 10 year old daughter that Seamus is in love with, Stephanie, or "My Stephie". He wouldn't dream of taking a nap while he is over there and missing out on prime Stephie time. They are teaching him Spanish and have a dog to play with. Our kitties just don't compare.

So although I felt bad that he was so exhausted and still had to sit through his treatments, I'm glad it was because he had such a fun day.

We're home!

We got discharged last night and Seamus is just thrilled to be home. I'm not sure if it's because he's feeling so much better or just happy to be home, but he's been downright giddy.

I heard him in his crib chatting away to his stuffed animals this morning and then he spent the morning playing happily and actually wanted breakfast, which is not a common thing.

Even through the worst of it in the hospital, he still was mainly in good spirits. The nurses love him. Even after they have to do something unpleasant to him, he still always says "Bye-bye" and usually "Thank you". He is so good about putting up with stuff and really never complains.

We were able to have a few nice moments. We spent many hours playing with his stickers and made a very nice collage which is hanging up in his room now (I'll try to add a picture.) Elmo and Barney videos were certainly a big help and Dr Seuss books always work wonders. I now know more about Red Fish and Blue Fish than I ever wanted to know. There was a little crayon incident that we won't discuss. I'll just say the boy was on a clear liquid diet and was starving!

The next step is to get an endoscopy and sigmoidoscopy to see if they can get a better idea of what's going on in there. We did get a few recommendations from a CF doctor in Buffalo who specializes in GI issues so we're going to start with those.

But as of right now, the world is good.

Elmo Finger

When I asked Seamus what he was going to do today he said "Elmo Finger" which is what he calls the pulse-ox probe they put on his finger (and makes it red like Elmo)to measure his oxygen levels in the hospital.

I think that means he's feeling pretty bad and he knows when he feels that way, it's time to go in. The insurance company wanted us to wait until Tuesday but we're heading to the ER in the morning instead.

11th time the charm?

We're heading back into the hospital, hopefully tomorrow. Seamus needs to be cleaned out again. We're just waiting for the call to tell us they have a bed ready for us.

This will be his 11th stay so we're hoping they come up with some new ideas soon. I'll post updates when I can.

My Dancing Boy

Here are a couple videos of my favorite dancer:

I say Yay!

Seamus has developed a funny new habit. Instead of just saying "Yes" or "No", he will say "I say Yes" or "I say No". This weekend we heard a lot of "I say Yay!".

We surprised him and took him to Sesame Place outside of Philadelphia. We told him we were going to meet Uncle Rick, who he adores, but didn't tell him where. As soon as we pulled into the parking lot, he went nuts, and that was just from seeing the parking signs with Elmo and the gang.

There's no way I could fully express how much Seamus loved it. From a 2 year old's perspective, it was the best place ever. He got a chance to meet Ernie up close and get a hug and kiss! He saw Elmo's World live! He swam with Bert and Ernie and went on a spinning balloon ride in Cookie's balloon (which he declared was "Awesome")! And the parade... We saw everybody and they all came over and waved hello to us!

Seamus is such a sweet good natured kid. Even though it was ridiculously hot and humid, he never complained. He waited patiently in line and was just so happy. I can't say the same for us adults, who were all grumpy at different points in the day.

He is just the friendliest child too. He wants to talk to everybody and it just breaks my heart when people don't respond to his cheerful "Hi". How could you ignore such a heartfelt greeting? He was just in heaven having so many people to chat with.

Every night before bed, we snuggle and say our "Good Nights" to everybody we know (and I mean everybody) and talk about all the fun things we did that day. That night's chat was especially nice. I thanked him for being such a good boy and told him I was so proud of him. It's the best way to end the day, laying in the dark giggling with my beautiful baby boy.

Beginning

This is my first post and I'm a little nervous. I decided to start this blog because I wanted to make a record of how great my life is. I have a wonderful husband, James, who is a great father to our 23 month old son, Seamus, who is the best kid in the whole world. Seamus has Cystic Fibrosis but I don't intend to dwell on that in this blog. I want Seamus to be able to read this one day and think back on a childhood filled with singing crazy songs and dancing the jig.

I named it Mugga Bugga because that's one of Seamus' favorite things to say. We don't really know what it means but he sure has a good time when he says it. I try to keep that in mind when I'm having a rough day.

Hopefully, I will be able to keep this updated. I'm not very good at these kinds of things but I'll do my best.