Seammy and Mommy's Adventure

Today, Seamus and I had a nice adventure, or as Seamus calls it, our "venture". We spent the afternoon at the Baltimore Inner Harbor being pirates.

Our afternoon started with an unexpected visit to the GI clinic. Since his ER visit last month, we've been doing various treatments at home, none of which have been very effective. Today at our visit, the GI doc today told me "Mrs Coleman, there is nothing else we can do. We've tried everything." I really don't know what I'm supposed to do with that. It seems like I should be upset but I'm not because I refuse to believe it.

After leaving the clinic, I decided we needed to do something fun. I asked Seamus what he wanted to do and what he wanted more than anything was to get a lollypop, a "big, big green lollypop." We set out on our adventure to find it.

At the Inner Harbor, we found a red lollypop (next best thing) and some fruit punch and sat and watched the boats. You'd think he had won the lottery. They have paddle boats shaped like dragons which he loved. Maybe we'll ride them on our next adventure. I know it's cliche, but seeing things through his eyes really does make me appreciate them more. I didn't remember how good fruit punch tastes.

After we finished with our treats, we took a tour on the USS Constellation, a real Civil War naval vessel, but to us it was a real pirate boat. Seamus got to steer the ship, play with the cannons and run around like a swashbuckler.

He is going to get x-rays tomorrow and there's a good chance he'll be admitted again.

Go Diego Go!

Seamus is the first one to tell you he's a big boy, not a baby. And big boys wear Big Boy Panties with Diego on them. He started going on the potty before his second birthday so we were very excited and thought we were going to be done with diapers in no time. Not exactly.

The doctors have warned us it's going to be hard. Seamus takes so much medicine to make him go that it's very hard to control it. We've tried to cut back on the meds but then he ends up blocked up and in the hospital. He also spends all night and three times a day getting fluids pumped into him which is too much for his little bladder to hold.

He really is doing a great job though. Mentally, he gets it and lets us know as much as he can. Those Diego panties will be his someday!

Making Strides

Saturday was a big day. James graduated with a double Masters degree, an MBA and a Masters in Informational Technology Management. He had to deal with a lot these past few years while working, taking care of Seamus and going to school. Seamus and I are so proud of him.






It was also the Great Strides Walk for CF. Our Team, Go Seamus Go!, raised almost $3000! Thanks to everybody who came out to walk with us and for everyone who contributed. It was a beautiful day and the Kentlands, where the walk was held is a gorgeous place to walk. Ga and Pa joined us this year. Ga was able to finish the walk which is something she never would have been able to do a few years ago before she lost 93 pounds. We are proud of her too!

Like all kids, Seamus has his own unique way of talking. He still can't pronounce the "br" or the "l" sound very well so things come out like "blekfast" and "wowwypop". The other day, he apologized for something and said he did it by "ascident". Often he likes to hang "uspide-down". One day he's going to get it right, and I think I'll be very sad.

Mother's Day was very nice. We went out to dinner on Saturday with Ga and Pa and had lots of fun (if you don't count the throwing up at the table, which doesn't faze us at all but the poor waiter looked a little shaken up).

On Sunday, we went to Music class and saw all our friends. Miss Jamie has told us to let the kids experience the music however they like, and in Seamus' case, that means running around the circle we all sit in at full force for the entire hour.

Afterward, Mommy got a nice nap while the boys went to the playground. It stopped raining just long enough to enjoy it. I had asked Seamus if he wanted to join me in a nap, and he said "No, that's lousy".

After opening presents and having delicious strawberry angel food cake, we all played bubbles. You can never go wrong with bubbles. Seamus got a work out chasing them around the living room.

Motherhood

5minutesforMom is having a photo contest for Mother's Day, What Does Motherhood Mean To You". I think this photo says it all. It was taken last year in the hospital when Seamus was at his sickest. I love that the camera caught us sharing such a tender moment.

Marrow Donor Program

For Mother's Day, the National Marrow Donor's Program is waiving the fee to join the registry. Please consider joining and saving a life.

http://www.marrow.org/HELP/Events/Thanks_Mom/index.html


Thanks

Back to the ER

Well DIOS (Distal Intestinal Obstruction Syndrome) reared its ugly head again last week. We could tell that Seamus was slowly getting back to his old GI patterns and on Tuesday after complaining for days about wanting to throw up, he actually did. We knew he was ready for a clean out.

He didn't get admitted to the hospital, although it probably would have been better if he had. They sent us home from the ER to do a clean out which didn't work. Wednesday he was worse than ever, vomiting multiple times. We went back to the CF clinic on Friday and they wanted us to make one more attempt at home but said they would admit him if it still didn't work. We're still on the fence whether it completely worked or not.

Some good things that have come out of this experience last week:

The Coleman family got to spend a lot of time together. We spent time lounging in bed and reading lots of stories (albeit with frequent linen changes)

Seamus got to see all his friends at the hospital and got stickers!

Seamus got his very own red sparkly vomit bag. It was the only thing we had handy in the car on the way to the hospital. He's still walking around with it.