Long time

Well, I've let it go too long again.

Seamus had a nice birthday party, even though it got rained out. Somehow we crammed 16 little kids with parents and siblings into our house and still had a good time. It was Spiderman themed so he had a Spiderman decorations, Spiderman Pinata, Pin the Sticker on the Spiderman Game, and of course a yummy Spiderman cake made by his Aunt Meghan. The kids all made super hero masks and had to pick out a super hero name for themselves. Seamus was "Doggie Man."

My birthday was the next week and we had a nice weekend again. Seamus has become obsessed with Toy Story so we went to the 3-D double feature of Toy Story Parts 1 and 2. In that last few months, I've seen both those movies at least 20 times each so having to sit through a marathon was pretty rough, but Seamus loved it. We came home and the first thing he wanted to do was watch Part 2 again. He got Woody and Buzz dolls for his birthday, and he is truly never without them.

He had a pretty rough week after that, GI-wise. He had about 2 good weeks after his hospitalization before the same old symptoms came back. He had x-rays last Friday which showed lots of gas but supposedly not too much stool. Since he's complaining about pain again (it hurts like wood again, no more soft pillows), his doc put him back on the suppositories. It it the worst torture for him but he knows they help. Even while he's sobbing when we do it, he says through the tears "that's better, that's better." He is still not eating or pooping much and his stoma around his feeding tube is leaking which I don't think could be related to rectal ulcers so I think we'll be returning to the doc soon.

I meant to write this story down weeks ago so I wouldn't forget it. For a few days in a row, I could not get the theme song from "The Imagination Movers" out of my head. It was making me crazy. Seamus was trying to help me and said "Why don't you draw a picture of the song so then it will get out of your head and onto the paper?" I thought that was a pretty clever idea.

Goodbye My Friend

We lost a very close friend this week. Our cat, Izzy, had to be put to sleep on Tuesday because he had "thrown a clot" which means somehow a blood clot found it's way to his hind end and we found him paralyzed on the basement floor. By the time James got him to the vet, his heart was giving out and his lungs were full of fluid.

Izzy was fifteen and had numerous health problems so the vet was always amazed at each visit at how well he was doing. He was my original baby. We were together long before I met James or ever thought about Seamus and when I decided to move to DC all alone fourteen years ago, he was the one who kept me company on lonely Friday nights. I also had another cat, Alice, but I adopted her as an adult and she never really needed me the way Izzy did. Izzy was cool because he was very loving but not overly needy. He was huge, 32 pounds pre-diabetes, and was much more dog-like, than cat-like.

He was so sweet with Seamus. I think they saw each other as kindred spirits, both took lots of medicine and went to the doctor's often. After this last hospitalization, Seamus was lying on the couch one day getting his dreaded hydrocortisone suppository and was screaming and sobbing. Izzy ran right over and tried to jump up in between us . After we pushed him away, he ran to the end table near Seamus' head and jumped up again. Now Izzy was huge and old so he did not jump often, but nothing was keeping him from his pal Seamus. We pushed him away again and then he jumped onto the back of the couch, which I have never seen him do. He reached his paws down to touch Seamus to let him know he would protect him. And it calmed Seamus right down.

Tuesday night, we told Seamus that Izzy was in heaven now with his grandpa and was keeping him company. He said "That's a good idea." We went on to say that Izzy wasn't sick anymore and didn't need any more shots or medicine. Seamus looked really happy and I knew he was thinking about his own treatments and medicine. Then he said "Do they have little kid stuff in heaven?" I had to choke back the tears when James said "Yes, they do" and all I could think of was "Yes, but I wish they didn't need to."

Good bye, Izzy, my love. We will all miss you terribly.

Thanks

I want to thank everyone for the kind and encouraging comments. I have not been very good at keeping up with other blogs but I know everyone has their own issues that they're dealing with so I really appreciate people taking time out to think about us.

Seamus is doing great. He has a little cold but that's not holding him back. I knew he really was feeling better when he told me last night that going potty "didn't feel hard like wood any more. It feels soft like a pillow."

We're starting to plan his birthday party in a couple weeks. It's going to be all things Spiderman! We're going to have two bouncy houses in our backyard but I have to think of other Spidey related things. If anyone has any clever ideas, please let me know.

And, oh yeah, he's gained two pounds!

Moon light

The last few nights have been pretty cloudy so we haven't been able to see the stars. Last night as Seamus and I cuddled in the dark and looked out the window before he went to bed, I heard a little voice say:

"Moon light, Moon Bright,
First moon I see tonight.
Wish I may, wish I might,
Have this wish I wish tonight.

I wish I had a merry-go-round in my house."

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.

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."

Heart

I would love to see the world through Seamus' eyes. We went to the movie "Earth" yesterday, which is like the Discovery series "Planet Earth" and shows animals in their natural habitat. I was a little worried because I read some parts were scary for little ones. I tried to warn him ahead of time that if he was scared I would cover his eyes or we could leave. No reason to worry.

In what is probably the scariest scene, a cheetah is hunting a gazelle. Everything is in slow motion with the two animals running side by side. Seamus thought they were playing. The cheetah catches up to the gazelle and grabs his hind end and pulls it towards him. Seamus said "Oh, he loves her." Then in slow motion the cheetah embraces the gazelle and slowly his mouth reaches for the throat. Then the scene cuts away. Seamus said "Oh, they were hugging."

Later in the day, I let him run through the sprinkler in our front yard and before you knew it, we had all the neighborhood kids joining him. Seamus ate it right up and played the perfect little host, even though most of the kids were about 9 or 10. He met a new boy, Joey, that he thought was the bees knees. Eventually the sprinkler activities turned into a squirt gun battle. His greatest love, Stephanie, who can usually do no wrong was trying to sneak up on Joey and was enlisting Seamus' help. She told him to get Joey because "he was a bad guy". Seamus stopped in his tracks and yelled "He is not a bad guy, he's a really good guy."

I just love how he doesn't see the bad in anybody, a cheetah or his new pal Joey. Everybody gets the benefit of the doubt with no preconceived notions. Maybe it's just three year old innocence but I like to think it's also his huge heart.

BTW, we ended up doing three clean-out treatments at home. They were not very successful but seemed to temporarily do the trick. We have to continue to watch him closely.

Sure sign our household is obsessed with poop, Seamus' new joke:

"Why did the chicken cross the road?"
"To get to the toilet."

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.

Bedtime

Seamus and I have a routine every night. He brushes his teeth, gets his pj's on and we read a bedtime story (or 4 or 5). Then we cuddle in my bed and chat for a little while until he's ready for his bed. These are some of my favorite times and something I hope he always remembers about his childhood.

Tonight, we read a Dora the Explorer book about the circus, then we named all the colors in Spanish, even all the made up colors like pink-blue and brown-white.

S: "Seamus is tired. Is Mommy sleepy? Is Pa sleeping in Heaven?"
M: "Yes, he is, Sweetie"
S: "What color is his plane?"

It took me a minute and then I remembered this conversation we had last summer.

M: "He's not in a plane, Honey. He's in Heaven."
S: "Heaven is in the sky, right? So he's in a plane. Why is he in Heaven?"
M: "He was very old and sick with cancer."
S: "Why was he old and sick?"
M: "Some people just get cancer"
S: "Will I get cancers?"
M: "No, Honey. Pa is happy now and he's not sick anymore. He doesn't need to use his wheelchair and he can dance."
S: "He can dance? Good." Then I heard him softly whisper "wheelchair, wheelchair".
S: "Mommy, how do you spell wheelchair?"
M: "W-H-E-E-L-C-H-A-I-R"
S: "Wheelchairs have wheels. What else has wheels?"

He rolled over on his elbows and looked just like Doris Day in Pillow Talk while we listed everything from cars to wheelbarrows. He thought of some good ones like skateboards and "sometimes, beds have wheels" and of course, planes.

I love how his brain works.

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.

Breath-ing

It's been a while since I've posted because we've been very busy at our house. We had a nice New Year's, not very eventful, and then on Saturday, we had a big housewarming party to celebrate the new addition to our house finally being done! I'll post more about those later, with pix, but I wanted to write a quick post while yesterday was still fresh in my memory.

The last couple days have been rough with Seamus' GI issues. His DIOS symptoms (Distal Intestinal Obstruction Syndrome) are back again even after spending a night in the hospital three weeks ago for a clean out. Even though he has not been feeling well, we needed to get out of the house. We decided to go on an adventure yesterday to a local nature preserve that has lots of trails where he could ride his scooter.

It was a short car ride but he was very tired by the time we got there. After riding his scooter for about 5 minutes, he was exhausted so I started carrying it. I noticed he started to lag behind so I said, "Are you too tired?" and he responded, "No, I'm just happy."

The air felt really good so I showed him how to take a deep breath through his nose and let it out with a deep exhale through his mouth. He liked the feeling of the cold air so he repeated it over and over saying "The fresh air is nice. I'm breath-ing."

As I watched my beautiful boy, I literally lost my breath knowing I could never take this simple act for granted. "Breathe, my love, breathe."

We spent almost all weekend at home. I don't think Seamus is feeling up to par yet. Yesterday, he and I were going to have an adventure to see the National Christmas Tree by the White House. I thought he'd be all excited to see the "giant tree" but he really just wanted to stay home and play with his cars and the "tunnel" our builder gave him from the roll of flooring (it's like a 6 foot long paper towel tube.)

Right before we were to leave, he was fussing around so I warned him "If you don't get ready right now, we won't go see the tree." His response was "Okay, we won't go." I really wanted to see it but what can you say to that.

A little while later, James asked him if he was going on an adventure with Mommy and he said "I'll meet her there." James said "You might get lost if you don't go together." Seamus came and found me and said "Mommy, you don't have to go by yourself. I'll come with you," like he was doing me a favor, which I guess actually he was.

On the car ride there, he kept saying he was sooo tired. When we were two blocks away from our destination, I looked in the backseat and he was out like a light so I headed home.

So much for our big adventure.

We win!

Conversation Tuesday night:

"Do I win if Barack Obama wins?"
"Yes, Sweetie, we all win."
"Does Spiderman win if Barack Obama wins?"
"Yes"
"Does Captain America win if Barack Obama wins?"
"Yes, Honey, we all win if Barack Obama wins."

He paused...
"How about Spidergirl?"

The Best

This morning at 5:00 AM, I heard Seamus calling to me from his room. He wanted to come into bed with us.

As we were falling back to sleep, he said "Let's hold hands." So we did, and the last thing I heard was "I love you, Mommy".

Doesn't get any better than that.

Halloween Part 1

Well, we've been very busy lately. The house is getting nearly completed and over the weekend we moved in all my mother's things. Seamus loves running around the "new house" and has found lots of good hide and seek places.

The weekend was busy with Halloween activities. We went to a party at the local musuem in town on Saturday. It was fun but poor Seamus was squeezed pretty tightly in his "chihuahua" costume. I say that in quotes because the only dog costume I could find was a pug but every since we saw that horrible movie, Seamus has had nothing but chihuahuas on his mind. I got a 3T which is supposed to be for 32-37 pounds. Seamus is barely 32 pounds but there is no way it fits. We could literally squeeze him into it only after cutting a hole in the crotch because his torso is too long. The feeding tube adds to the tightness too. It was the biggest one they had and he loves it. If we went up in size, it was into the big boy costumes which were all pirates and ninjas and I'm not ready for my baby to do that.

On Sunday, we met Seamus' friend Neve and her cousin and parents at a pumpkin patch. The corn maze was a hit with the kids but the best was the hayride. It went through the woods and had all the characters from Shrek, Winnie the Pooh and a bunch of fairy tales. The kids loved it. We also picked out pumpkins which we took home and carved last night.

I have to mention a cute story. Seamus and I went to Burger King yesterday and he got a toy that looks like a miniture tv with a couple pictures that you scroll through. When we got home, James was watching football. A little while later I went into the room and saw Seamus sitting in his Diego chair next to his daddy holding hands with him. I asked him if he was watching football and he said no, he was watching the puppy show. He had put the little BK tv next to the real tv and was sitting there staring at the picture of the dog. He told us the whole story of the show, "It's about a puppy who lives in a house with his mommy and daddy."

I could just eat him up. Pictures of the chihuahua to come.

Are you 3 or 13?

Last night, Seamus was in rare form. James tripped over one of his toys and hurt his foot and was hopping around in pain. Seamus' response: "It's no big deal, Daddy."

Also last night, Seamus and I were doing the Wii and I got on to be weighed. When your weight increases, it makes your little Mii, which is supposed to look like you, get bigger. Seamus saw that and said "Mommy, you're big and fat".

I realize he is just parroting me. Today I caught myself saying "It's no big deal" to somebody and yesterday after we went out to lunch, I was very full and said I felt big and fat. But still.

He does another funny thing For some reason, most of his sentences start in one of three ways:
"So, I want to go to the park."
"Oh yeah, I want to go to the park."
"I just want to go to the park."

I'm not sure where he gets that from, but it's very cute.

Not so good

Seamus had only been to nursery school twice before coming down with a really nasty cold. We knew to expect it, just not so soon. Before that, he had gone almost his entire 3 years with only a handful of colds. We have some serious thinking to do. If this continues to happen, we may have to pull him out and wait until next year.

I have also been suffering from allergies and Seamus has been very sweet. Yesterday we were lying in bed together and I asked him how he felt.

"Ummm, good. How do you feel?"

"Not good. I can barely breath."

"Mommy, you can use my shake and bake vest if you want."

"Thanks, Sweetie."

Classic Seamus

Today, Seamus went to the mall with my mom and me. We were in Macy's picking out bras when he said:

"Are these for boys?"

"No, they're for girls"

"Like vaginas?"

Right, just like that.

First Haircut

We couldn't hold out any longer. Seamus got his first real haircut today. Daddy got one too. Seamus told him "Daddy, now you look handsome like me!"