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March 18th, 2009, 08:00 AM
Join Date: Mar 2009
My name is Tammy and I'm here because of my dd Hailey. She will be 5 at the beginning of Aug. She weighs 24lbs and is 37 inches tall. She's very tiny. She has congenital scoliosis, fused ribs, small heart defect, FTT, Cecostomy tube for constipation and a few others. We are mainly watching everything, thankfully!
She was 5 lbs at birth, 37 weeks. It's been a struggle to get her to gain weight. She just doesn't consume enough calories to gain and is constantly maintaining or gaining a few oz just to lose them.
She eats orally but for the most part gets her calories from pediasure and CIB. She never takes in more than 750 calories a day.
She's never been on the chart but has been following her own curve, dipping below it a few times over the years. She's been approved for GH through the endo but I don't really want to go that route and her old ped agreed. We are seeing a new ped now and the first visit the new ped was like something is going on here your child is FTT and technically malnourished... she looks very healthy, fyi, just tiny!
We have plans to see the endo, geneticist and new gi over the next 3 months. We've seen them all before but didn't really need to go back per her old ped.
Her new ped is mentioning a g-tube. To be honest I always wondered why they didn't do that years ago.
So, I guess my questions are what are the current FTT tests and how do they determine if a g-tube will actually help her. We will refuse a NG tube as she's had 10 for bowel clean outs and had a terrible time with them. She refuses to eat, drink, talk and has constant bubbles/drool coming out of her mouth. Not to mention it just hurts to see your child fight having one put in.
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