Sunday, February 22, 2009

Seamus' List

Christy at Color Me Healthy had a good idea. Because the CF blogging community has gotten so big, it's hard to keep track of who is dealing with what issues and what treatments everyone is on. She posted a list of a few things about herself to get people caught up. So here is Seamus' list.

1. He was born on September 28, 2005 with Meconium Ileus and spent 10 days in the NICU.

2. Because of amniocentesis, we knew before he was born that he had CF with mutations DeltaF508 and R542X.

4. He has been hospitalized 16 times with GI problems, mostly Distal Intestinal Obstruction Syndrome.

5. At 18 months, he had a pyloroplasty to widen the opening between his stomach and intestines and a g-j tube was placed in hopes of stopping his excessive vomiting and weight loss.

6. A year later, he was still vomiting almost everyday. Another endoscopy was done and he was found to have eosiniphilic esophagitis.

7. He is allergic to milk, soy, beef, and pork.

8. His daily meds are: Digestive - Miralax 1 capful thru g-tube/3x day; Mucomist, 2 mls/2xday, Vitamax 1 ml/2xday, Vitamin D3 15 ml/1 day, Prevacid 30 mg/2x day; Primadophilus Reuteri (probiotic) 1 tsp/1xday; Flovent 110mcg 2 puffs without spacer/2x day; Pancrecarb MS-4 9 with meals and before and after tube feeds. Respiratory - Flovent 44mcg 2 puffs with spacer/2x day; Pulmozyme 2.5 ml neb/1xday; Chest Percussion Therapy via InCourage vest, 30 minutes/2x day.

9. They switched his g-j tube to a g-tube 6 months ago. He gets 8 hour feeds each night and is still struggling with weight gain.

10. Seamus loves being around other kids, probably because he is an only child.

11. He loves pre-school, the Wii, Spiderman and SpongeBob.

12. He is an amazing kid and is always concerned about others. Everyday, he inspires me to be a better person.

13. His favorite joke: "Guess what?" "Chicken Butt!"


Lil' Chris' Mom said...

Thanks for posting this. I didn't know all that about lil' Seamus:( I'll be praying for him.

Tooter's Mommy (Courtney) said...

You have such an awesome little boy! Who doesn't love the "Chicken Butt" joke?

I agree that it's interesting to see all the different manifestations and care!