Saturday, December 27, 2008

Christmas 2008

Christmas was great. Seamus oohed and aahed over every present, at least until he got to the socks, "Ohhh, socks." He loved his stuffed Spiderman who talks and even snores, the Wonder Pet stuffed animals who have been attached to his side, the Hungry, Hungry Hippos game (thanks Uncle Woody and Aunt Chris) and his Honey Bee game which is just a bee on a stick that you jump over as it revolves around. He's been playing that for three days and the "Flight of the Bumblebee" is quickly becoming my least favorite song. He also got a set of plastic food and dishes because he loves to play restaurant. For months he's been taking our orders and delivering invisible food. Now he can actually give us "real" pretend food.

Mommy and Daddy got a new great big tv from Ga which will be great to play the Wii on. It was nice but also sad, especially for Ga, since it was the first one without Pa.

But the big news is Seamus has been wearing big boy panties since Wednesday! He said he didn't want to wear diapers anymore and he's doing great. There's only been a few accidents and with all the liquid we push through his g-tube all day, that's really amazing. Today was the first time we went somewhere while he was wearing underwear and it went well. Tonight he's been having some of his GI issues and asked to wear diapers so it will be slow going but we'll get there.

Wednesday, December 24, 2008

My little cutie

Our computer hasn't been working at home so I haven't been able to upload any new pictures but these are ones we had done last month. I also stumbled upon some we had taken in the Spring of 2007. I can't believe how much he's grown in just a year and a half.












Monday, December 22, 2008

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.

Saturday, December 20, 2008

Seamus had his clinic appt yesterday and things went really well. His cough has worsened since he was in the ER but Dr P said his lungs sounded fine. She put him back on antiobiotics just in case though. He gained a little under a pound, which is great considering he went without food for almost 2 days earlier in the week. He's also taller and his BMI went up a little.

But the greatest thing, as far as Seamus is considered, is the present Santa left for him, the Go Diego Go! game for the Wii. He would have gotten it at the party last weekend but he was too sick to go. Santa left it at the clinic for him instead. It's awesome! We only got it yesterday but we've already played it for about 5 hours. I would highly recommend it for any toddler because it's very active but not too hard to figure out. He told me he wishes Diego could come out of the tv and play with him.

Wednesday, December 17, 2008

We're home

Seamus was finally admitted at 2:00PM yesterday after being in the ER for 18 hours. By 7:00 PM, after being on Go-lytely for 21 hours, he was pronounced clean and was discharged.

He's thrilled to be home.

Monday, December 15, 2008

I'm writing from the ER where Seamus is in the midst of a clean out. They want to admit him but the only room available was a shared room so we all decided it was better to stay in the ER for now where we have a private "room." Hopefully, tomorrow they'll find us a single room on the floor.

I'm not a doctor but I've sure seen enough x-rays to know he's pretty blocked up. They clean him out with Go-lytely which is what we do at home, but here they can give him huge doses and monitor his blood levels. Sometimes it takes days and days of the stuff. This is the first time he's really cried and complained of pain so we know it must be really bad. Usually when we are here he's happy and laughing so no one can believe how bad off he is, until they see the x-rays, but this time they really believed it just looking at his face. Instead of asking the kids how they feel on a scale of 1 to 10, they use a pain scale with little faces on it and ask the kids to pick the face that looks like how they are feeling. Seamus went right for the "10" face with a frown and tears streaming down. It made me cry because I had no idea he was in that much pain.

Please keep Seamus in your thoughts and prayers tonight.

Quick Update

Seamus is getting x-rays today. I'll keep you posted if he ends up being admitted.

I don't know what it is about December but if he goes back in, this will be the 4th year in a row that he's been in the hospital right before Christmas. I'd hate for this be our family tradition.

Saturday, December 13, 2008

Today was a good day. We started out getting our Seamus' new playroom all organized. He was a big help and loves to help vacuum. The house is finally starting to get in order.

Our friends from music class, Isabel, Sam, and Gigi, came over this afternoon for a playdate. I'm very proud of Seamus for being so good at sharing his toys. He even gave one of his old baby dolls to Isabel's little brother, Oliver.

Then we all went to our town's Holiday Festival. Everybody got their faces painted (Seamus got a nice Xmas tree on his cheek) and we saw the big guy. Seamus had a lot to tell him and just want on and on but Santa wasn't too interested. He barely said a word to any of the kids and kept taking off his beard. What the heck, Santa? Seamus didn't notice his lack of enthusiasm and thought he was just great.

We also had been invited to an Xmas party Johns Hopkins puts on at the airport with Santa flying in but Seamus wasn't up for it. It's a big deal, someone has to actually nominate you from the hospital but he's still complaining about his tummy hurting and the blockage is getting worse so we didn't want to go too far from home. His cold has also gotten worse and lots of the kids at the party are really sick so I didn't want to expose them to anything.

Tomorrow we're going to try to bake some cookies and gingerbread but I think we'll be doing a lot of resting too.

Tuesday, December 9, 2008

Pressure

The whole Santa and present thing is all a little too much for Seamus to handle. We talked about the naughty vs nice thing a few weeks ago in a very short conversation and we realy don't talk about it all the time but Seamus has become obsessed.

He's constantly talking about being a naughty boy and if James or I raise our voice to him at all, he'll break down crying and say "I'm a good boy, not a naughty boy." He puts himself into timeout even for things I wouldn't make a big deal of and gets all worked up, and he has, on a few occasions, woken up in the night, crying out "I'm a good boy, I'm a good boy."

It's really too much for him to handle. He's so sweet and sensitive and I feel very guilty. We reassure him as much as we can that he is good boy but I think we have to stop watching the Christmas specials and focus on other things.

On the health front, we did a home clean out treatment last week which helped somewhat but the last few days he's started vomiting again. I'm not sure which doctor to contact because he still has his cough, although it's much better, which is producing lots of sticky mucus that he ends up swallowing. His stools are already super sticky but now they are even stickier and he vomits because things can't go down because he's blocked below. So is it a GI issue or a pulmonary issue? We can try to get him really cleaned out but until he stops producing so much mucus, it will just keep happening. He has a clinic appointment next week. I hope we can wait until then.

Tuesday, December 2, 2008

Thanksgiving 2008

We started the day watching the Macy's Parade. Seamus was in awe. "Mommy, who's that? Who's that?" I don't think he could believe that Big Bird, Underdog, Dora, Thomas the
Train, and Mickey Mouse could all be in the same place. And with Santa, are you kidding me?

While Daddy made dinner in our brand new kitchen and Ga was out being very nice serving dinner to the homeless, Seamus and I decided we would surprise them with a craft project. We made Pilgrim hats and Indian headbands and turkey name place cards for dinner. Here are some pix of our new kitchen and our artwork.







The next day Seamus decided we all were super heroes (including Super Bunny). We all spent the day with capes, or what non-super heroes would call towels, on and big letters attached to our shirts: S for Super Seamus, M for Super Mommy, D for Super Daddy and G for Super Ga (obviously). All day, we could only answer to our Super name.





We didn't leave the house much all weekend except to go to Watkins Park to see all the lights. They have one of those drive through light displays with thousands of lights. It really is amazing and of course Seamus loved it.

He hasn't felt like doing much lately because the cold he's had pretty much since school started has now turned into a nasty cough. On top of that, his GI issues are acting up. We're watching him closely on both fronts but basically he's feeling pretty crummy but even with all that, I still couldn't ask for a better kid.

Thanks


Thanks to Alicia at Experiencing Each Moment for my very first blogging award. She blogs about her life with her husband and two kids, Timothy with sensory issues and Samantha who is just about Seamus' age and has CF.

Here are the rules....
1. Post the award on your blog
2. Link me for giving it to you
3. Link the originating post nominating you here
4. Pass the award on to 5 more deserving people
5. Post these rules for your recipients

It's really nice to know people like Alicia are out there who understand what we're going through. Here are others who also understand.

1. Froggy Mama
2. The Tale of Olivia's 65 Roses
3. Life as a Mum to 2 Children with Cystic Fibrosis
4. G-Man's New Lungs

I will post soon about our very nice Thanksgiving in our brand new kitchen but I need to upload some pix first!

Monday, November 17, 2008

Tall tales

On the one hand, I feel bad about lying to my son, but on the other hand, boy I wish I had thought of this before.

With Christmas coming, Seamus has started seeing Santa all over on tv, in stores, etc and it has really peaked his curiosity. Yesterday we looked at the toy catalog and talked about how Santa gives presents to good boys and girls. He's not my baby anymore, he kept picking out "bigger boy" (he's a big boy, the older kids are bigger boys) toys like Spiderman and Ironman stuff.

At first this struck him as very cool, free presents, but as the day wore on it started to concern him a little more. Every so often, he'll make a comment like "So, bad boys and girls don't get any presents?" or "How does Santa know if you're being bad?"

I expect things to be pretty tame around our house between now and Dec 25th.

Thursday, November 6, 2008

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?"

Wednesday, November 5, 2008

Halloween Part 2

Finally, pictures from Halloween:












Tuesday, October 28, 2008

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.

Monday, October 27, 2008

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.

Monday, October 20, 2008

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.

Sunday, October 19, 2008

CF Appt

On Friday, Seamus had his CF appointment. Things are going pretty well, his chest sounded clear even though he seems to have a cold and he also has an ear infection. Seamus is so used to living in pain that he never complains. I did think something was funny when he said on Thursday that Crabby Patty's ear hurt. I asked him if Seamus' ear hurt too and he said "Noooo, Crabby Patty's ear hurt" in a tone that meant he thought I was nuts.

She wasn't too concerned about nursery school yet but does want to keep an eye on things. Seamus had just finished a round of antibiotics for the last cold when he started sniffling again. If it turns into a hacking cough kind of a cold that lingers, we will need to re-evaulate school.

They are a little concerned about his weight. His weight went down but he gained a half an inch so his BMI is going down. Not a good sign. We will need to increase his night feeds if this continues because there is no way he's going to make up the calories by eating. The kid just has no interest, except for french fries.

On a very happy note, Miss Terri's son did not actually pass away. There was some miscommunication at nursery school. Apparently, he came extremely close but they were able to revive him. He is in critical condition, but doing okay.

Thursday, October 16, 2008

I just found out that Seamus' teacher, Miss Terri, lost her son yesterday. He was just a teenager with several health problems who apparently had an asthma attack and died. I can't even imagine what she's going through. It makes me realize how very, very, very lucky I am and I want to run home and hug my baby right now.

Tomorrow, he has a CF appointment. I think he's starting to get another cold so we'll see what Dr P says about nursery school.

BTW, thumbs down on Chihuahua from me but big thumbs up from Ga and Seamus.

Saturday, October 11, 2008

New fun

For my birthday, James got me a Wii. We all love it, especially Seamus. He can't get enough baseball and he's really good at the bowling. He beats me. I'm using the Wii fit to try to lose weight. Seamus will use it to try to gain weight.

Other than the Wii, it's been a pretty quiet week. The house is moving along and Ga will be moving in with us in a couple of weeks whether it's done or not.

Today, we're going to see Beverly Hills Chihuahua. I"ll let you know how it is.

Sunday, October 5, 2008

Birthdays

Seamus had a great birthday party. It was outside at a local park and it rained off and on all day. That just made it messier and more fun. Everybody was caked in mud by the end. Here are some pix.











I also had a nice birthday on Friday. It was a milestone birthday so I thought I'd be pretty upset but it was actually very nice. I took the day off of work and James, Seamus and I went to WV. I was sitting at lunch watching my two favorite boys when I realized my life couldn't be better. Forty shmorty.

Sunday, September 28, 2008

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

Wednesday, September 24, 2008

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."

Saturday, September 20, 2008

The Dance Craze Sweeping the Nation

video

Other big news, Seamus got into nursery school last week! He's gone twice and it's been great. The teacher has had another CF student a few years ago so she knows the basics but Seamus isn't your average CFer with all his food allergies, feeding tube, and vomiting/pooping issues. We have our fingers crossed.

Here's two pictures of Seamus on his first day.



Please keep Seamus in your thoughts. He's in the midst of one of his "down" times and may need a clean out in the hospital soon.

Sunday, September 14, 2008

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.

Friday, September 12, 2008

Good news and Bad news

Do you want the good news or the bad news first?

Well, the bad news is last night about 11:15, I tried to change Seamus' diaper while he slept. His feeding tube got caught on his pants and pulled right out. Well, not completely, and James (not me, I can't stand to do it) was able to push it back in. But we had to go to the ER to replace it because it wasn't going to stay in.

We made it to the ER about 12:15 and after a little wait, we got right in and the docs saw us. Seamus was actually happy to be there. He loves the stickers and all the attention. Since we are no longer using the j-tube portion of the gj-tube that goes into his intestines, they were able to replace it right there with a g-tube that only has a 2 cm tube going into the stomach. That's the good news, if you couldn't tell. That means we didn't have to call repeatedly to set up an appointment so Seamus could come back and go under anthesia to have the Internal Radiologists place a tube in his jejunem. That's great progress.

By 2:00 AM we were ready to leave but Seamus wanted no part in it. He cried because he wanted to stay there. He got over it as soon as we got in the car and I thought he'd fall instantly asleep but he sang the whole way home and was up this morning at the regular time, no worse for wear.

Saturday, September 6, 2008

Happy Hannah Day

"It was too cold to go out and too wet to play ball." Sorry, that's from Cat in the Hat, one of our nightly regulars.

It actually was too wet to play ball, thanks to Hurricane Hannah, but we went out anyway. Around noon, we decided we'd had enough so we got our rain coats and umbrella and headed out. Mid-way through the walk, it really picked up but it was all the more fun. Seamus ran and ran and jumped through every puddle. It was windy but not cold and we didn't go far so I figured we weren't getting any wetter than we would in a long shower.

After we came in, Cowboy Seamus (he announced early this morning that he was a cowboy and was never far from his hat and "cowboy shoes" all day) and I dried off and got cozy under the covers in bed and read books. He's really picking up words and is going to start reading to me soon. Then CS helped me make brownies and while we waited for them to cook, we played puzzles. It always amazes me how good he is at figuring out puzzles.

Later, we went to Ga's house and had a nice visit. He conked out on the way home, still in the cowboy hat. It was a good day.

Wednesday, September 3, 2008

Mini vacation

So we just got back from a much neeeded little break. We went to New York to visit my father and family and catch up with friends. Seamus enjoyed himself, although he is the youngest of my friends' kids and found it hard to keep up with the big kids sometimes. Although the majority of time he was definitely the ring leader.



Ga came with us. It did her good to get out of town and visit with friends she hasn't seen in almost a year. It was hard for her to go to all the places she went with Pa but I think it helped her to talk about him with all their friends.

We spent some time in the mountains at our friends, Deb and Scott's, cabin. It was the first time Seamus had been (pseudo)camping and he seemed to like it, although he kept asking us when our trip was going to start. Before we left, we were worried about how he would handle the mustiness of a mountain cabin and things like campfires and swampy places but we were careful and it all worked out.

On another note, we were looking at pictures of Grandma Jo's kitty who died a few years ago and when we told Seamus she was in heaven, he said "Then Pa can visit with her" so I think he's handling Pa's passing okay.

Monday, August 18, 2008

Goodbye Pa


Seamus' grandfather, who he called Pa, died yesterday. Seamus loved him very much and is going to miss him terribly. Pa and Seamus had a special relationship. Even when Pa was at his sickest, Seamus could make him smile with his high fives and silly questions.

Pa had been sick for a very long time with cancer. In October 2007, Pa and Ga, moved down to MD from Rochester NY to be with us. While we have been building an addition on our house for them, they have been living in a temporary apartment. Twice a week, they baby-sit Seamus and lately he hasn't been able to play with Pa very much. Seamus understood he was sick and had to go to the hospital last week.

Pa was in hospice care where my mom and I stayed with him and yesterday James and Seamus stopped to see us. It just happened to be right after Pa passed away. I was afraid I wouldn't know how to explain Pa's death to Seamus but before I had a chance to figure it out, he asked me "Where's Pa, where's Pa?"

"Pa's in heaven now with the angels, honey, and he isn't sick anymore."

"He's not?" The idea of Pa being well really seemed to make him happy.

But later when he saw that Ga was sad, he seemed confused. I told him she missed Pa and he said "But Pa is in the hospital". We told him again about Pa being in heaven and this time he said "I'm frustrated".

I'm worried because Seamus knows that he gets sick and has to go to the hospital often, just like Pa. I don't want him to associate going to the hospital with going to heaven.

Saturday, August 9, 2008

County Fair

I have two words for you, pig races. As soon as Seamus heard there were pig races at the County Fair, it was "When are we going to the pig races?, Where are the pig races?, Can't we go to the pig races now?"

This County Fair was just like what I would imagine a 1950's County Fair in IA would be, minus the deep-fried Oreo cookies and Wii raffle. You'd never think we were less than an hour away from Washington DC.

We saw cows, pigs, sheep and horses. Seamus got to play with a bunch of kids in the "corn pit", a giant sandbox full of animal feed. A clown made him a giant spider balloon that was almost bigger than him.


He went for a ride on the bug roller coaster and car ride, alone like a big boy, and he ate cotton candy. He even won a prize stuffed whale playing a game. It was the duck pond where everyone wins but never the less, he still won.


And of course, there was the pig races (and a duck race). It didn't quite live up to all the build up but Seamus didn't notice. He was too busy playing dragon vs cow and pig with the kid next to us.

On another note, Seamus is totally into the Olympics. I never expected that. He recognizes all the gymnastic equipment and keeps saying "I did that in gymnastics." He also watches the swimming and says they are "scooping and kicking" like he does in swim class.

Wednesday, August 6, 2008

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!"

Saturday, August 2, 2008

Nice Days

Seammy and I decided to take it easy today. Since it's raining, we can't go to swimming class so we slept in and then Seammy joined me in bed. We were there for hours reading books and playing hide and seek under the covers. I feel like I'm coming down with a cold and it was the hardest thing to stop myself from smothering him in hugs and kisses.

Last night, I came home from work and we spontaneously decided to go out. The town next to us has a new little downtown area with a big fountain to run in and all kinds of new restaurants. Seamus loves it. While Mommy and Daddy ate, he played with the kids and got soaked. I knew he wouldn't eat much dinner but we let him have ice cream (sorbet for him) anyway. Isn't that what summer's all about?

Here are some pictures of our Chicago trip: