Arianna is having a bad few days eating. Today she had 4 oz. of yogurt, 2 bites of a grilled cheese, 2 bites of a pancake, 2 bites of a cookie, 2 spoonfuls of icecream/bananas and 1/4 of a cheese stick... Maybe 300 calories. Then she had about a can of pediasure, adding 237 calories for ~537 calories total.She's supposed to have over 1000 calories a day. She's not looking good either.
I'm so sad, I actually cried at dinner while trying to get her to eat ice cream - she has me very frustrated, anxious, sad and worried.
Shawn and I disagree on the extent of how dangerous/serious this is and had a HUGE fight that left even Arianna screaming from the other room. Having a sick child isn't good for a relationship, especially when they disagree.
I think its her reflux, getting worse. We can't change her to a different medicine until after her genetic testing is complete. We see the geneticist in a week and 4 - 6 weeks for the testing results. That means December before she starts eating? She's not on the charts anymore and we really can't afford to wait that long. I'm so frustrated and scared for her...
And I hate hate hate hate hate it when I hear other people comment about how small she is or how little she eats. YES, I KNOW SHE ONLY EATS ENOUGH TO KEEP A MOUSE ALIVE, I DON'T NEED TO BE REMINDED OF HOW SHE DOESN'T MATCH UP TO HER PEERS, THANKYOUVERYMUCH.
3 comments:
I'm so sorry that Arianna is having such a hard time right now, and I know exactly how stressful your situation is.
Is it possible to alter the dosage of Arianna's meds even if you cannot alter the meds themselves?
Is it possible to add some CIB to the yogurt for Arianna to at least boost up the calories? Or some powdered milk?
I hope that this just reverses itself; the reflux is such a beast. Meanwhile, we send you lots of positive thoughts and hugs and such.
aw thanks abby!
Unfortunately because we haven't ruled out Long QT Syndrome we can't change her medicine and she's at the maximum (actually just over it) for her Axid. I just wish genetic testing didn't take so long - heck, even getting the appointment took a month! grr... LQTS is such a beast because almost every single medicine you take can alter the potassium/calcium channels in your body which is a big no no for folks with Long QT.
It's comforting to know we're not alone though... you'd think by the time she was 19 months this would be 'sort of' behind her, but it only seems to be getting worse :(
Sorry to hear about the troubles:( It's an awful feeling. We went through a similar situation with Savannah's eating when she was around 1 year + b/c of her food allergies then. One thing to remember is to try to never let her sense your anxiousness or stress about the situation, b/c it can really make it worse. We went thru this with Savannah, and I found that once we relaxed about the whole thing she did eat somewhat better. We let her have the control, and didn't bug her about eating more, etc. Not saying this is happening with you, or that it's the same situation, but something to keep int he back of your mind:) Hope things get better there really soon. I am going to try to email you again this weekend!
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