Tuesday, July 29, 2008

"Ga, are you sad?"

"Yes, I am, honey."

"What will it take to make you happy?"

"I want Pa to get better."

"Pa will get better and I will always be your best boy."

Sunday, July 27, 2008


We survived Chicago without any hospital visits, although we had two close calls completely unrelated to CF. Getting there and getting back were both two very long stories but in between we had fun.

We started our visit in Millenium Park which is great for kids. The Crown Fountain was Seamus' favorite. It's two huge structures with faces of Chicagoans displayed which every few minutes "spit" a stream of water which kids play in along with waterfalls. Seamus also got to go to his first real concert. Justin Roberts, who I had never heard of but apparently is very popular, was performing an outdoor concert. Seamus got right down in front and experienced his first mosh pit with all the kids who knew all the words and were dancing like crazy people.

We spent a day at the aquarium and got to see the dolphin show, baby belugas, and lots of starfishes just like Patrick.

But the biggest attraction was our room. Seamus never wanted to leave. It was nice (nothing too extravagent) but it had a big comfy bed where he got to watch movies, eat bagels and sleep with Mommy and Daddy. I think he was still pretty worn out from being in the hospital the week before because he wasn't as energetic and crazy as usual. He needed time to rest up and eat. His appetite was great and he couldn't get enough carbs. He ate tons of french fries, bagels, and pretzels. We were happy to see him eat anything after the previous few weeks.

Saturday, July 19, 2008

So Lucky

I know even with all the GI troubles Seamus has we are incredibly lucky.

There is a little boy, Garren, in VA, only 7 years old, awaiting a double lung transplant. Please visit their blog and donate to his transplant fund if you can: G-Man's New Lungs

Wednesday, July 16, 2008

Home again

So we ended up going back to the ER on Sunday and finally got admitted. After much confusion and disagreement between many docs over what his x-ray showed, he was treated and discharged this morning. The plan is to do nothing. I don't know why they would think it won't happen again if we don't change something in his regimen, but we can only argue so much.

Seamus was his usual charming self (in between stomach pains) and all the new doctors and nurses fell in love with him. It's really nice that so many of the nurses who he's had in the past come to visit even though he's not their patient. Everybody remembers Famous Seamus.

We are planning on taking a trip to Chicago this weekend and I hope everything goes alright. I hear they have some good hospitals there, but I really don't want to find out first hand.

Friday, July 11, 2008

Here We Go Again

We were not paying attention to the calendar or we would have been better prepared. We've been told (by doctors at the hospital no less) that do not ever go to the hospital in July unless absolutely necessary. Not only are the brand new doctors starting, there is also a big turn over of higher up docs who may know medicine, but are not necessarily familiar with the workings and politics of a hospital. This is true all over, not just at Hopkins. Last year, we ran into the same exact problems.

Unfortunately, even if we had read the calendar, we had no choice. After the vomiting got progressively worse and the very intensive home treatment failed, we had to go in to the ER on Tuesday. To make a very long story short, after seeing a new intern who was afraid to make waves and being diagnosed over the phone by a new fellow who knew nothing of Seamus' long history with DIOS and couldn't even be bothered to actually see him, we were sent home at 1:00 AM. Well no shock, the next day he continued to vomit so a gastrograffin enema was scheduled for yesterday. That's a heavy duty treatment in radiology which is supposed to break up anything. Supposed to being the key word.

Well, here we are the next day and three vomits later. He hasn't thrown up since this morning but that's because he refuses to eat anything. He's barely eaten anything since over a week ago and it really shows. Not only is he skin and bones, he has no energy. We just tried to take a walk and James had to carry him after about 15 steps.

I'm trying to think of something good so this post isn't all negative but I really can't. Even our "venture" to the zoo after the gastrograffin ended in a messy disaster. We know we're going to have to go back but the only thing worse than going to the ER in July is going to the ER in July on a weekend.

Tuesday, July 8, 2008

Fourth of July Weekend

We started out on the Fourth at our friends', Brianne and Todd. Seamus was his normal charming self and even got to run around all "nudie-boy" in the sprinkler. He couldn't get over how good the corn on the cob was.

Uncle Rick came to visit later in the day and we all went to the movies. Let me tell you, Wall-E is a good movie but not so great if you're two years old. Seamus has been to two movies before and did really well but they had lots of cute characters running around. For the first 20 minutes of Wall-E, he's by himself or with one other bug and/or robot. Not too exciting. It finally picked up and Seamus got into it and he's still talking about it.

Saturday, we went duck pin bowling. Seamus came in second place behind Daddy! He was a great motivator, cheering us all on, and was actually pretty good but lost interest around frame 7.

We also spent much of the weekend dealing with vomiting. Seamus wasn't holding anything down by Sunday so we did one of our clean out treatments last night. It seems to have helped.

Here's some pics of the last few weeks: