Tuesday, January 08, 2008

CF Appointment Today!

(Froggy trying out two kaleidoscopes at once. One of them was a Christmas present for her boyfriend "The Bub" but she opened it 'for him' a little early.)

Froggy had her clinic appointment at Children's Hospital today. She's doing great!

This appointment was initially stressful because our nutritionist informed us at the last appt. that if Froggy wasn't at least in the 25 percentile for weight, they would suggest we put in a g-tube (gastric feeding tube).
Froggy has always dealt with malabsorption and is on the highest dose of pancreatic enzymes, so the g-tube allows her to eat without using such a high dose, and it's an easy way to add calories while she sleeps. But... it's invasive, there's a risk for infection, she would have general anesthesia, and she's doing wonderfully otherwise. So her mommy and daddy don't like the risk, and definitely don't like the idea of a hole in her belly.

Fortunately Froggy was barely in the 25th percentile, weighing in at 26 pounds. And by the way, at Froggy's age I wasn't even in the 5th percentile, so this kid is exceeding her genetic predisposition for being a total munchkin. And all the girls in our family are pee-wees so it will take a lot of convincing before FD and I jump on the g-tube bandwagon. Fortunately for now, we don't have to.

Without a nap, Froggy was a superfreak at her appointment and was literally bouncing off the walls and screaming whenever anyone with a white coat stepped within two feet of her. She gave our nurse the stink-eye and I think she made her cry. Everyone loves her, so when she gives you the "I hate you" look, they really feel it. Yep, it was a fun day.

Please send positive thoughts and prayers our way that her throat culture is negative for pseudomonas and all the other nasty lung-critters. We'll know the results in about a week, so start sending those healthy thoughts now!


Beverly said...

I do so hope her culture is negative.

That's great she's above the 25th percentile, even if it is barely.
David said the other day that Ella is becoming a little more picky with her eating, so that concerns them a little. Ella weighs around 21 pounds at 17 months. I'm hoping she continues to gain as she should.

I know about the screaming. Ella just has fits when she sees them coming at clinic. I feel bad for her and for the medical team.

Anonymous said...

sending healty thoughts froggy's way. she is always in my prayers!! congrats on the 25th%. good news. hugs - jcn

Mieke said...

Gabo is 4 and 26 pounds.

I'm glad you avoided the G-tube!

Sending many healthy thoughts to the girl.


Casey said...

Healthy healthy healthy healthy healthy healthy healthy healthy healthy healthy healthy healthy healthy healthy healthy healthy...etc.

Sending nothing but amazingly good thoughts your way.