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


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 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!