We are scheduled for an official Neocate weigh-in on Monday morning. Giving us almost two full weeks on this formula. I am tempted to remind them of our vacation departure plans, so as there is no confusion as to our timeline of availability. It's been a year & and a half since we've been anywhere outside the immediate area, and even longer than that for me to go somewhere when not pregnant. So, there will not be any disruption to our plans.
I fed Andi some sweet potato & white bean prior to her g-tube feed at noon. Upon finishing her g-tube feed of Neocate, I realized how wet her outfit was -- soaked. So, when I went to change her into outfit #3 or 4 today, I found it also coated with sweet potato gunk. 'uhm, tasty!' I filmed it and might post it later, in an attempt to help all our viewers stay on track with their diet of course! Because, I'm just so thoughtful like that! So, her stomach isn't emptying, or it's oozing out from around the g-tube. Why? In reading a blog of another kid with CHARGE Syndrome, they had a gastric emptying test. I googled that and wonder why we haven't had that one yet. We haven't had any sort of digestion tests, at all. My kid is 9.5 months old and doesn't even weigh 13 lbs., obviously, there's a problem. The GI specialists at the hospital told our Dr. that we needed to see the feeding specialists there first. Wow, that sounds like a colossal waste of my time. Feeding isn't really the issue at this point, it seems more a problem of processing and absorption. Hello?! Am I the only one that gets that?! I'm about ready to traipse our asses (excuse my french) up to the different specialists at the hospital and plop her on their laps and ask, "'WTF?!' 9.5 months, not quite 13 pounds... HELLO!?! Bueller? Bueller? Bueller?!" Something better happen quickly. Although this Mom is nonconfrontational, there's a storm brewing within and I might just implode. In the meantime, I can't help hum the good ol' Carly Simon song they used as a jingle in the 80's for the Heinz Ketchup commercial, [sing along] "Ant-tice-ci-pate-shun! Ant-tince-ci-pate-ate-ate-shun, is making me WAIT! Keepin' me WAY-ATE-ATEING!"
Hi, just wanted to say I love checking in on Andi Bean, and reading all about her!ReplyDelete
I wanted to echo your belief about the whole absorption/emptying issue because we have the same issue with our daughter Moriah. She does have delayed motility which we saw from the gastric emptying test, but we had bad experiences with the medications they used to speed up her motility (erythromycin - she became allergic to and reglan - caused her to be really jittery).
We just try to check her residuals in her tummy, and if she has a lot, we will start feeding her later, or just do it at a slower rate.
Also, M has never been very big, which can be apart of Charge. She is three years old, but is only the size of a two year old. I think it just adds to their cuteness if they are on the small side =)
We are on Elecare which I think is the equivalent to Neocate. One thing I've noticed too with M is that if we try to increase her caloric intake, her she tolerates her feeds even less and just creates a downward spiral for us.
I totally understand your frustrations with feeding - GI issues have been one of our biggest challenges.
Pls dont hesitate to contact me if you have any questions!
Hugs from one Charge mom to another,