Today was the big appointment, all 1 hour and 45 minutes long. The first thing they do it measure his head circumference, length and weigh him. He grew about a centimeter and a half, his head had also grown but the real disappointment came when he sat on the scale. 19.6 pounds. Still.
One month later of having two PediaSures a day and the kid hasn’t gained an ounce. We went back to the room and waited for Dr M to see us. She is great and commented how it looked like his face had gotten chubbier. I thought it had too but he hasn’t gained a single ounce. She said it is good news that he has grown in height and his head has gotten larger, but we need to figure out how to get him to eat. She also mentioned that she has found cystic fibrosis kids don’t grow in weight AND height, which made me feel a little less concerned about cystic fibrosis.
Bottom line is he got 3 vials of blood taken to be tested for all sorts of things, including celiac disease. She wants to make sure there isn’t some organic condition/disease causing his complete lack of appetite. She also ordered a sweat test for him to rule out cystic fibrosis, I have to call and schedule that once they fax up the paperwork to bio-chem in the hospital. Lastly, we are meeting with a “feeding team.” I had never even heard about the feeding team before today so I looked online when I got home and this is what Hasbro says about their Feeding Team:
“We are a multidisciplinary team that specializes in evaluating children with feeding problems. Our members include a pediatric gastroenterologist, pediatric nurse practitioner, child psychologist, occupational therapist, speech pathologist, and a registered dietitian.”
I have a packet about 20 pages long to fill out about his eating habits, personality and health. We also need to write down everything he eats and drinks for three days in a food journal. Then I will mail it back to Hasbro and wait for the call to get in with the Feeding Team.
Our plan of action is:
- Bloodwork (done, should hear results Monday)
- Sweat test for cystic fibrosis (waiting to schedule)
- Feeding Team meeting (multiple appointments)
- Keep up with high calorie foods and increase from 2 PediaSures to 3 per day
I called Greg immediately after the appointment and his first question was “How do you feel, better or worse after this appointment?” Honestly, I feel the same but definitely better than if this appointment had happened 8 days ago.
Seven days ago one of our best friends was diagnosed with a brain tumor. Suddenly, Jackson having cystic fibrosis isn’t as scary as it once was. We can deal with whatever sort of diagnosis we get, which could just be “picky kid.” In the mean time I’m praying for our friend to beat this brain tumor and realizing just how precious life is.