Saturday, February 21, 2009

CF Appt

Yesterday, Seamus had his CF appointment. The timing was good because I've been sick all week with a sinus/bronchitis thing and thought it would be good to get him checked out.

The good news is even though his nose has been running like crazy, his lungs sounded fine. Dr P gave us a prescription for antibiotics in case it turns into a "serious" cough. He coughs in the morning a lot but I think that's from post-nasal drip so we haven't filled the prescription, but what if I'm wrong? It's so hard to judge when we should be cautious and give them to him to try to avoid any lung damage at all or hold off on the antibiotics so he's not resistant to them later on in life when he will definitely need them.

The bad news was the dreaded weigh in. He didn't gain any weight again. When he got his feeding tube put in two years ago, he was down to about the 20th percentile and after being on it a few months, he jumped up to about the 80th percentile. He's been slowly heading back down and now he's at the 51st. That's not really bad but that's with being hooked up to a feeding tube eight hours a night! I can't imagine what would have happened if he didn't get it put in. We're going to increase his feeds at night and hope that helps.

Because he's getting taller without gaining any weight, he looks a lot skinnier and pants that used to fit are now falling off of him. Literally. We were in the subway station last week on our museum adventure and he said "Ohhh". I looked down and his pants were around his ankles. The funny thing is I had on an old skirt with an elastic waistband that's all stretched out. Right after Seamus lost his pants, I felt something funny and realized my skirt had fallen down to my knees! And there were people walking right behind me! We went to dinner and I had forgotten about it (I don't how I could) but when we walked back to the station, it happened again! I guess you can call us the Flashing Colemans.


Lil' Chris' Mom said...

Too funny about the skirt and pants:0 LOL

I'm sorry he didn't gain any weight, but don't give up hope. You are doing a great job, mom! He didn't lose any wight, and he is a happy lil' boy:)

Tooter's Mommy (Courtney) said...

Did the doctor have any good suggestions for his weight? Any good foods that he can start eating that he maybe hasn't before? I'm a big fan of buttercream icing myself!!

That's pretty awesome about your skirt and his pants dropping, even though I would've been mortified. I guess you could have told people that you did it to yourself so that Seamus wouldn't be embarrassed.

Julie said...

The nutritionists don't have much to offer because Seamus is allergic to almost all the foods they usually suggest to CFers. He can't have milk, soy, beef, or pork which rules out any cream, butter, cheese, hotdogs, bacon, etc. He used to eat things like hummus and olives but now he's a picky three year old so we're stuck with mainly chicken nuggets, french fries, pasta with olive oil, peanut butter, and fish sticks. A big problem is he's just not very hungry because his tummy hurts all a lot.