The things we do to feed our children

There’s finally a break in the clouds. Annabelle seems to be feeling much better this past weekend than she has for the last several. We had a hurdle last week with the medical supplier that once again.. didn’t ship our new formula. I thought I had one extra can to carry us until Thursday when the shipment was to arrive and miscounted. AK called in a panic Wednesday evening and asked where the extra formula was.. when we realized we were out – we quickly moved into Parenting-Crazy-Annabelle-Survival Mode. I contacted the one person I knew in VA that also uses Elecare and drove an hour to her house to beg for 1 can.. that left her with only 2 cans for her own son. Oh the things we do for our children. I got home from work that night after running the interstates, a little after 9pm. I was exhausted, AK was beat, but we both high-fived that we’ve jumped another hurdle. Thursday was spent all day on the phone calling every Lincare office and leaving more voicemails than you can imagine for someone to explain to me where my childs formula was. I was told on numerous calls “Mrs. Bishop, please don’t worry – someone will call you back” … it’s been hours, I left voicemails the night before, I began calling again at 7am, they promised a return call by noon… it’s now after 3pm. I was done.

“Im sorry mam. Do you have kids? Are you going to feed them tonight? Because im NOT unless someone finds my childs FOOD!” I finally worked my way up the ladder to the corporate office and demanded an answer before hanging up the phone. The answer was: The dietician that was to place my order, was supposed to call me because the prescription was written wrong two weeks ago.. she hasn’t been in the office therefore she never called to deliver that message. Which resulted in our formula never even getting ordered. Fancy, huh? We’re switching suppliers immediately.

She still doesn’t have much of an appetite. I don’t know how to make a kiddo eat when she isn’t hungry. She isn’t even being picky – she just will no eat, regardless what I try to serve her. The only thing that I have found to be working are salted corn chips. Weird, I know. She likes them because they’re crunchy and she can carry them around in her bowl.. but that isn’t a meal by any means. She doesn’t want much to do with fruits, veggies, pastas, toast, or even many juices anymore. I don’t know whats going on.. but I can start to see she’s losing weight. I don’t know if she’s lost more since our last visit or not.. but she is definitely thinning out.

Nosebleeds are new. She is having small nosebleeds almost daily for over a week now. Sometimes they barely last long enough to make a messy face and stain a white shirt. Other times it takes a few minutes to make them stop. But they are new. The weather is changing and I wonder if that has anything to do with it..

I did make contact with the GI again last week and asked to make a change. I really am not happy with the Prilosec compounded prescription we are now on. Annabelle has been on compounded Prevacid/Omeprazole since she was an infant and it’s always worked well.. our last inpatient at MCV is when the prescription was changed by the doctor on the floor. I was told that we had maxed out the dosage for age/weight with the Omeprazole and we needed to switch to a new PPI but that isn’t the case. I asked our new GI last week to change back and she agreed with the change. Of course when she called it in – it has become a problem because we already have a PPI that was filled with the compounding pharmacy this month and insurance doesn’t want to cover a second. Im dealing with that currently, but hopefully once I have it Annabelle will do much better from that perspective.

Ashley Fun Fact: I didn’t know reflux would still be an issue / problem after a Nissen is surgically performed. I truly believed that the Nissen would prevent acid reflux and the discomfort from happening any more. I was wrong to assume that..

Besides that little update, things are going ok. Annabelle is becoming more of a mommys girl than daddys girl lately. She asks to cuddle more frequently and when she isn’t feeling well, she wants to be held and cuddle (can we say, Ohhhh my aching back?! She isn’t a very light girl! lol). When she does have energy and wants to play, she is sharing many smiles, giggles, and fights with her big sissy. For those days, I am always grateful.