Here’s a list of what Elizabeth “eats” every day– I’ve written it in the form we recognize of meals and snacks. In reality, the few enjoy life mini chips and a couple licks of PB is all she takes in orally. We also give an extra 16-24oz of water daily. Breakfast: 1/2 cup quinoa with… Continue reading What my Toddler “EATS”
FPIES What is it?
Food Protein-Induced Entercolitis Syndrome (FPIES)– is when the body reacts to the protein in food. For some children, one food is the trigger and for others multiple foods trigger the response. Read more about FPIES here. Last week we began to suspect Elizabeth might have FPIES. She has vomited multiple times per day her entire… Continue reading FPIES What is it?
Two Steps Forward… One step back.
We’ve been working on bolus syringe feeding for the last couple weeks. Elizabeth was doing well– tolerating as much as 2-3oz in one sitting. I was still spending all day feeding her, but the freedom to have her off the pump (and backpack) during the day was worth it! Yesterday, our darling started retching every… Continue reading Two Steps Forward… One step back.
Blending Food for Tube Feeding
We are now at 20 months of tube feeding with Miss Elizabeth. Every day is a juggle to figure out exactly what she needs to grow and reduce vomiting episodes. Here is her current blend– Elizabeth gets about 900 calories/day right now because we are trying to make up for lost weight that’s occurred over… Continue reading Blending Food for Tube Feeding