Let's just say I had a lot of questions for the GI NP! I had more to talk about today with GI than I've had in a while! I'd already emailed back and forth so she knew what was coming!!
And can I just say that I'm so thankful for Ayer's Clinic!! The Vandy docs come down and it saves me 6 hours of drive time! The nurses in the clinic are beyond sweet to Asa since they've seen him for 3 1/2 years now!! He can rule the roost if he wants to!
Anyway back to the appt! Asa has lost 4lbs in the last 6 months. While that doesn't sound like a lot when you take into account that he's supposed to be gaining you can see the problem. He went from 40% on the growth chart down to 4%! wow, nearly FTT again! He did NOT need to be at 40% but 4% is too low!
He actually looks pretty good. He is easier to carry around too. But he has stopped sitting up on his own. And forget about trying to get out of bed or even scooting around. These things aren't good if it's from the lack if good nutrition I can help fix that!
Since he can't have Pedisure because of dairy then we are going to try Elecare orally. He'll have at least 2 cups a day plus all his other foods. Hopefully he will drink it from his straw cup and he'll gain weight. If that happens we'll try to do without the Reglan. Maybe what we thought was dymotility was just an allergy. He never had motility testing done. They just tried it and it did help some. If the Elecare, weight and no Reglan works well then we'll talk about taking the tube out!! Not for at least 6 months though!
I'll start the Elecare tomorrow. I'm praying he will drink it. He doesn't and can't eat enough to sustain him. He needs the Elecare! He'll drink it! Right?!?!