Froggy had her CF clinic appointment on Friday, Nov. 6th.
She is still 30.5 lbs - the same weight she's been all year. Her height however was 100cm. She's growing up, not out. Darn. So her BMI is 10, weight 10th percentile and height 50th percentile. Our nutritionist said that because of Froggy's pickiness, coupled with lack of appetite, the g-tube is inevitable.
FD and I have been fighting this decision from the beginning. We felt like it's such an invasive step, that she could be genetically small, and would start eating more the older she became. But if anything, she eats less and is more active. Because there is a direct correlation between digestive health and lung health, FD and I have decided this is the best decision for our Froggy. We have tried EVERYTHING to get her to gain weight, milks with supplement in the middle of the night, high fat/calorie meals and snacks. We wanted to exhaust our options before the g-tube. But here we are, a year later and only a few ounces gained.
The wheels are turning and we'll meet with a GI doc soon for a couple tests before we schedule the surgery. It will probably happen in December or early January.
Froggy's throat culture came back NEGATIVE for Pseudomonas and MRSA, and all the other nasty little critters. Woo Hoo! Her x-rays showed little change from the x-ray two years ago, but did show slight peri-bronchial markings. I believe this is typical for CF lungs, but will do some research to see what this means exactly. Her blood levels were good, a liver enzyme elevated slightly, but could be due to her seizure meds. We're going to keep an eye on that, probably do another draw at our next appointment.
Despite the g-tube news (which we were prepared for) overall it is good news. Our kiddo is one healthy little frog. Her lungs are clear, even with a cold. And her preschool teacher said she seems healthier than the 'healthy' kids. Her immune system rocks! Must be all the broccoli she eats!