Memorable week

Last week started with a lunch trip to Burger King for James, Seamus, and myself. Surprisingly, it's one of the few fast food places where Seamus can get milk-free, soy-free, beef-free, and pork-free food and they give away good toys.

As we were sitting there, a swarm of police ran by the window with their guns drawn. They ran over to the 7-11 next door. More and more policemen came and surrounded the place. Finally, a man came running out with no shirt on (in 30 degree weather) and a knife in his hand and tried to attack one of the policemen. Within minutes, at least 10 gun shots went off and the man was dead.

We had tried to shelter Seamus but the place was all windows and he saw a great deal of it before I could grab him and cover his eyes. I was much more shaken up about it than him. We don't let him watch violent tv but he's a 4 year old boy obsessed with super heroes so he's seen it and to him it's clear cut between the good guys and bad guys. When he casually asked me "Is the bad guy dead?" I knew he wasn't processing the difference between real life and tv. I told him that people may do bad things but that doesn't mean they are bad people but it went over his head. So far, he doesn't seem to be affected by it. I can't say the same for me.

On Wednesday, Seamus and James went to on a pumpkin patch field trip with school and had a fun time. They saw lots of baby animals, including piglets just a few days old, went on a hayride and picked out pumpkins.

Friday was CF clinic day and Seamus had a great visit. He's gained two pounds and grown half an inch so we were thrilled. He also got his H1N1 shot which takes a lot off our mind. We talked with the clinical researchers about getting Seamus in the hypertonic saline trials. Although it will add extra time in his morning and evening treatment routine and he doesn't have a lot of pulmonary issues currently, we thought it would be good for him. Maybe it will help keep away some lung infections this winter. Also, because he's not a good spitter, any stuff he coughs up ends up being swallowed adding to his already super sticky stools. So we figure if the mucuous is thinner in his lungs, it may help the GI issues too.

We spent yesterday making Batman and Spiderman masks and then going for a "Fall Hike" through our neighborhood in our disguises. Today we made pictures with the leaves we collected.

Lately, Seamus has been asking lots of questions about when he was a baby so we've been looking at photo albums. I didn't realize it but he thought that he was born with his feeding tube in his stomach and was surprised to see himself without it in pictures. It makes sense because he was too young to remember when he got it.

He's also been asking about what his kids will be like when he's "all grown up" and who their mommy will be. He thinks it's really funny that I will be their Grandma. For the longest time, he's been saying to anyone who will listen "I want to be a Daddy." I know he's going to be great.

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.

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

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!

More Vacation pix and video

Seamus goes back to CF clinic tomorrow to get his PICC line taken out. This morning he woke up with a runny nose, all sneezy and a low grade fever. I think he probably caught a cold after just two days of school. We'll see what they say.

His other issues seem better. He's able to poop without straining and says it doesn't hurt. That is a huge improvement.

This week was busy. He started school, 3 days a week, and soccer classes. I think it took a lot out of him but he loves it.

Here's more pictures from our vacation and a cute video.

Home Again

Seamus was discharged on Saturday afternoon with a PICC line to finish the antibiotics for his pneumonia and a treatment plan for the GI issues, which still seems a little uncertain.

They were shocked that in less than 24 hours between the colonoscopy, when he was clear, and the CT scan, he had gotten all blocked up again. He has colitis, which is inflammation of his intestinal tract, that is making his constipation worse, and then the constipation is causing more inflammation. It's like the chicken and the egg. They are treating the colitis with anti-inflammatory drugs but so far, he is still in pain and not pooping very much. We also have to give him a steroid suppository every day for the rectal ulcers which is pure torture for him. It breaks my heart to hear him beg us each day not to do it. Finally, he has H. Pylori, which causes peptic ulcers, but he has it in his intestines. The treatment is pretty heavy duty so they want to wait until the pneumonia treatment is done. So basically, the pneumonia is the only thing that is really under control.

Tomorrow, Seamus starts pre-school again. It's only a couple hours a day, 3 days a week so we are hoping he can handle it. He's really looking forward to it and we would hate to have to pull him out.

Here are some pictures of our latest vacation in Williamsburg and VA Beach. I'm so glad we could fit it in before he went into the hospital.