At gymnastics this week, Miss Patty demonstrated the latest routine the kids were supposed to master on the uneven parallel bars. They were to jump onto the lower bar on their tummy and then grab the top bar and move onto their feet on the lower bar. Then they were supposed to walk the length of the bar and switch their hands around and turn around and walk back down the bar the other way. (Did I mention this is a class of 2 year olds?)

I've been talking about how brave Seamus has become but he's no fool. When Miss Patty finished, he yelled "I am NOT going to do that!!" Who could blame him? People sitting way up in the bleachers started laughing.

Seamus has picked up another talent. He loves music and he has a weird ability to hear a song and name the instruments playing. We'll be listening to the radio and he'll say "That's the violin" or "That's the guitar". He can even do it with less common instruments like the tuba or trumpet. He's not always correct, but usually he's dead on. I see music lessons in the near future.

I don't know if I should mention this because I don't want to jinx it, but Seamus' health has been really good lately. He hasn't thrown up in a week and a half and he's been eating like a horse. He's still scheduled for an endoscopy and tube replacement next week but I think they may have finally hit on the right treatment.

He-Man

Sometimes he's so cute I can't stand it.

One of the first things Seamus says every morning is "I have to throw up!!" (Good morning to you too, son) We've taught him to run into the bathroom and do it into the bathtub, which sounds gross but is a lot easier to clean up than the living room floor and not as germy as other places in the bathroom.

This morning I was in the shower so James brought in a little basin, or tub, for him to use. When he was done James said to carry the tub with him in case he had to throw up again.

Seamus bent down next to the shower and started grunting and in all seriousness said "It's too heavy". It took us a few minutes to realize he was trying to pick up the bathtub and carry it around with him.

I guess it's pretty warped when vomiting starts to be a source of humor but this is our life and you work with what you have.

My little man

Seamus is a very deep, contemplative young man.

These days when you ask him a question, he puts a lot of thought into his answers. Even if it's just something like "What would you like to play?" he usually stops and says something like "Hmmm, maybe, I think Chutes and Ladders." Often, he puts his hand to his chin while he's thinking like he is trying to solve the mysteries of the world.

I often have conversations with him that I would have with any grown-up friend. It's amazing the concepts he picks up. It's easy to forget he's only two.

But last night, we were watching Dora the Explorer during his treatments and there were some little kids discussing what they wanted to be when they grew up. I asked Seamus what he wanted to be and he thought for a moment and then said "Maybe ... a duck?". I guess he still is my little two year old.

Long Story of Seamus' Health

When I started writing this blog, I said I was not going to dwell on Seamus' illness and I've tried to do that. Seamus is getting the best care available at Johns Hopkins Hospital but his condition has the CF, GI, and allergists stumped and frankly at this point, grasping at straws.

I made the decision to post about Seamus' condition today because this blog has gotten more traffic lately and I'm hoping that somebody out with Cystic Fibrosis (or a CF caregiver) has stumbled on it and they might have some ideas that our doctors have not thought of yet.

Seamus was born in September 2005 with Meconium Ileus, blockages in his intestines. They attempted to clear it with barium enemas and were practically ready to wheel him into surgery, when it finally cleared. That was the beginning of two and a half years of repeated episodes of blockages.

After many, many procedures and tests, here's a list of Seamus' issues (that we know of):

Cystic Fibrosis

Distal Intestinal Obstruction Syndrome which causes Seamus to be hospitalized every 6-8 weeks to get a thorough clean out.

Gastroperesis (very, very slow stomach emptying) which required surgery to widen the opening between his stomach and intestines and placement of a feeding tube into his intestines to bypass the stomach. He does eat by mouth also, but he gets most of his nourishment through 10 hour tube feeds at night.

Gastroesophageal Reflux Disease (and probably also Bile Refux) which causes daily vomiting.

Eosinophilic esophagitis (they're still trying to confirm this one) which also contributes to the daily vomiting.

Allergies to Milk, Beef, Pork and intolerance to Soy. He is on an elimination diet of these foods but with the CF he has to take pancreatic enzymes with every meal and when he's on his feeding tube which are made from PORK.

Redundant Duodenum (extra loops in his small intestine) which alone isn't a big deal but since it's hard for the sticky stool to move through the intestines, this just adds more distance it has to travel.

I'm sure I'm missing something but you get the idea. Here's a list of medicines (at very large doses) and treatments he's currently on:

Miralax, Mucomist, Flovent (with and without spacer), Pulmozyme, Pancrecarb MS4 enzymes, Prevacid, Vitamax, PT Vest

Here's a list of medicines we've tried that didn't seem to help:

Flagyll, Probiotics, Reglan, Erythomycin

He is scheduled for another endoscopy in a few weeks to see if some of the new treatments and diet have decreased the tremendous amount of eosinophils which showed up on the last one in September. But since he's still vomiting every day and having trouble stooling, I'm not very hopeful.

We are incredibly lucky that his lungs have not been very affected. We know living with GI issues is much better for Seamus but it still is very difficult to see our son go through all his daily problems and not be able to help him.

If anyone has dealt with similar issues or has ideas, you can email me directly at jnjcolemans@yahoo.com or leave a comment.

Thanks and now I'll return to writing happy thoughts.

Charmer

Boy, does he have me wrapped around his finger.

Last night, he was full of piss and vinegar. Every night before bed, he goes on the potty. Last night, I left the room for a few minutes and when I came back he had pulled almost all the paper off the roll and had stuffed it in the toilet and/or decorated the floor. As I was trying to clean things up, he started knocking things off the counter.

I was losing my cool when he gave me a giant hug and said "I love you, Mommy". What are you going to do? He's my little porcupine.

Hi Kids!

Today was pretty chilly, in the 30's, but Seamus was a little stir crazy so we walked down to the playground in the park at the end of our street. I haven't been there with him in a few months and I was amazed at the difference in him. He was climbing up and down on everything like a big boy, not a baby. I used to have to stand right next to him as he climbed on things, but not anymore.

A couple really big kids(about 7 yrs old) came over and Seamus literally started jumping for joy. As soon as he saw them, he called out "Hi Kids!!" They were nice enough to say hi back but they had no interest in playing with a 2 year old. He didn't seem to notice. He followed them around and tried to play, giggling at everything the big kids could do. He didn't seem to mind that they were ignoring him, but it broke my heart to see how much he wanted to join in.

It really reinforced the idea that he needs to be involved in more social activities. It's so hard finding the balance between sheltering him from germs and illnesses and making sure he doesn't miss out on being a little kid.

On the way home, he said "That was lots of fun, Mommy" so the day was a success.

BTW, he is kicking ass on the balance beam. Yesterday he was a pro and also impressed Miss Patty with his new somersault abilities.

Brave Boy

I'm very proud of my little Seamus. One of his favorite books is "How I Feel: Scared" and he has discovered that he can be afraid of something and overcome his fears and do it anyway.

Yesterday, we met our friends for lunch and a spin on the carousel at the mall. Seamus usually decides to ride on the stationary sleigh but this time, on the second ride, he chose a horse. He was very nervous and cried but as soon as the ride started, he loved the up and down.

He also has mastered the somersault. I've never seen him so scared as he was at gymnastics when they flipped him over, but at home we did one onto his stuffed Elmo chair and he was hooked.

In fact, he's gotten be quite the daredevil. At gymnastics, he jumps on the trampoline, they jump up and put their legs out in front of them and land on their butt. He's decided he can do this anywhere, including on the hard wood floors at home.

I started this post yesterday and it's just a coincidence I wrote about how brave Seamus has become because it looks like he might be heading to the hospital again. It's been a month since he was last cleaned out and he's started to have the same old symptoms. It's starting to wear me down. The doctors keep trying new things but it doesn't seem to matter, he ends up in the same place. I feel like we put him through so much and are getting no where.

I'm going to try to learn from Seamus and try to be brave. I think I may need to read the Scared book again.