Sure, Ava has Angelman Syndrome and hearing loss, but our biggest challenge overall has been helping her to eat.
We’re almost a year into her feeding tube, and it’s been a good step forward. But after 4 months of reflux and trouble keeping her formula down, it’s time to step out behind the ease of canned Pediasure into the wide world of blended food.
I’m actually super excited and hopeful about this, because I’ve been less than thrilled with her 100% formula diet. I can’t wait to see how putting REAL food back in her system will help her health overall.
So, when I got the initial recipe we’re to try from her dietician today, I was disappointed. It’s all packaged baby food (even the meat) and other items that are less than the ideal menu of healthy fats, brain food and organic veggies I was dreaming of (and have been reading about). The recipe is designed to be easy to make, and I can appreciate that. But I’m willing to do the work of making my own food, so it’s not what I really want.
I feel like I have to stick with the recipe at first because I’m worried that if I go off on my own right away, the texture won’t be smooth and runny enough to get through her tube. And we see the value of working under our dietician’s supervision, too, especially while we transition her and learn.
So off I went to Publix. For the first time as a parent, I even bought this:
I felt like I was judging MYSELF while I put 6 jars of meat on the checkout conveyor belt. (If you’ve bought this for your children, I apologize for being judgy about canned baby meat. Apparently I ate it as a baby, and totally survived. It’s just not my thing now.)
Anyway, this recipe is not what I want, but alas, it’s the baby step I’m taking tonight. We’ll adjust the ingredients as soon as I figure out what I’m doing and we invest in a Vitamix to really blend it down right.
I thought it would be good to blog this so I can track her progress from this initial recipe toward healthy, homemade food and ultimately, I hope, to a ketogenic or low-glycemic index diet to help with her seizures and brain health.
And before you begin hating on our dietician: she told me she’s totally on board with us adjusting the ingredients over time. There are complex factors that play into the recipe for Ava and I agree with her that we can’t make all the changes we want at once. For now, here’s to a good start, and less upset tummy for our sweet girl.