Day 2: Adventures with a syringe, a proactive step and dreaming of bottle-feeding

We decided to try and see if baby would take a sippy cup with a softer spout today. He played with it for a while and did mouth it (progress!), but didn't like when water came out. We ended up feeding him with a syringe again...but I cannot imagine feeding 6 oz of formula with a 5 mL syringe when/if the time comes. My allergist suggested Neocate (an elemental amino acid based formula) because it is hypo-allergenic (for most) and, apparently, tastes better than the hydrolyzed formula. The company tweeted at me about ways to introduce their product. If anyone's had success, please let me know what you did!

I know in the United States, there are several States that cover Neocate when prescribed by a doctor for this kind of thing - because you shouldn't have to choose between paying your rent or feeding your child. Here in Canada, my insurer, Manulife Financial believes all formula is a supplement and won't cover it. Now, I'm still able to breastfeed but if my child becomes Failure to Thrive on breast milk and Neocate is required for him to live, I wouldn't consider that a supplement.

Another mom on the FPIES Canada Facebook group gave me an idea about being proactive - I've made an appointment with my pediatrician, for a monthly weight check. I want her to keep a closer eye on things so that we can make course corrections early on. That being said, if his weight is stagnant or dropping, we'll have to supplement him...somehow. But I also feel better just having the appointment.

Anyway, a little anxiety is creeping in because my family is coming for a visit and we'll be trying avocado again today as soon as he wakes up from his nap. (We were doing solids around 8 am but after having to clean vomit out of the crib a few times, we've moved the solids to a time when he will be awake for at least 3 hours. That way his sleep is undisturbed too.) As I do every day, I hope for no reaction!

Last night I checked in with my husband as to how he was coping. He was quiet for a good minute and finally said "we'll get through it". Then, "of all the things I thought might be an issue, feeding him was never one". I will never again take for granted if we have a future where he can be like other babies and take a bottle. I did read a couple of blog posts by FPIES dads in particular on the blog for the International Association for Food Protein Enterocolitis (IAFFE). It helped to remind me that my husband is coping in his own ways, and worries in his own way, even if he is less vocal about it than I am. It actually really helps that one of us seems to be on more solid footing. I really take shelter in his quiet strength.