Life After NICU

Food and Nutrition; Look Out, More Change is Coming!

Two weeks ago I told you about the changes we made in our own eating habits that lead to some big changes for James. We officially have six days left of our Whole30 challenge, but we’re taking it through the end of next week. We’re all feeling better, have more energy, and experiencing weight loss – all the benefits we were hoping for. And I think it has done wonders to change the way we think about food and change our go-to foods for meals and snacks. I’m pretty confident we’ll carry these things with us beyond the end of our 30 days. Many things have changed for James as well, and for him it’s only just beginning.

Smoothie, quinoa turkey meatballs with marinara sauce, and apple sauce with avocado. Can't believe he eats this!

Smoothie, quinoa turkey meatballs with marinara sauce, and apple sauce with avocado. Can’t believe he eats this!

James is completely off the soy-based supplement he’s been on for over a year. It was intimidating to make this change because he received a lot of his daily calories from this supplement. When you have a child who is challenged with weight gain, eliminating calories is a tough thing to wrap your mind around. We played around with the smoothie recipe a little and created one that gets him more calories, more (healthy) fat, and tastes (in my opinion) a million times better than the soy supplement. He still won’t drink it, but eats it from a spoon with no problems at all. Even when it changed from purple to green he stuck with it. So proud of him!

We’ve also eliminated most pre-packaged meals from his diet, thanks in a large part to my mom. She has continued to make healthy soups and stews for him that he eats with no protest at all. We’ve also added a few new foods to keep him eating a good variety. He’s been such a champ. I know we are very fortunate that James eats pretty much anything we give him, as long as it’s pureed. Many, many families struggle with a very limited diet that their children will eat, making it so difficult to make changes. We’ve been there and I understand the struggle. I really feel for families who face this challenge every single day. It is so difficult.

But he does!!

But he does!!

We had our initial meeting with the nutrition group out of Minnesota yesterday. They are the fuel behind more changes coming James’ way. They were definitely pleased with what we’ve done so far, but had many more suggestions of goals to move toward over the next few weeks. The biggest change and challenge will be making James’ diet gluten-free. Intolerance and sensitivity to gluten are associated with, among other things, inflammation in the lungs and behavior disorders in children. I believe the recent change in James’ behavior was due to Keppra (today is his last day by the way!), but I’m definitely willing to try a gluten-free diet with him to see if there is any benefit. Reducing inflammation in his lungs, which would reduce the coughing he has when he runs too hard, would definitely be a good thing. It wasn’t something I was willing to try on my own, but having two very experienced nutritionists guiding me definitely helps. We have a follow-up appointment in three weeks to discuss the changes, or lack of, that we see in James, and can call anytime with questions or concerns. Very impressed with this experience so far, and curious to see how it goes for James.

Anyone who knows me knows I’ve never been any kind of health or nutrition nut. I know the basics we all know about eating healthy, and I’ve done better at some points in my life than others of following a healthy eating plan. Once again James is teaching me about things I didn’t know I’d ever be interested in learning. I’m thankful for the lesson though, because this is important. What we put in our bodies matters. Hopefully we’ll be putting a lot more good into all of us from here on out.

Anything to keep this sweet boy healthy!

Anything to keep this sweet boy healthy!

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2 thoughts on “Food and Nutrition; Look Out, More Change is Coming!

  1. That’s good news. I suppose we all should at better, but most of us just don’t have enough incentive. Good to hear James is doing well on his new diet. It looks like he eats a lot!

    • I feel like he eats a lot too! That’s one of the reasons the lack of weight gain is so frustrating. But he is in constant motion, even when he sits to read or play with something, some part of his body is moving. He’s definitely the incentive I need to eat healthier. One of his doctors feels like he will have some long term care needs and I want to be able to take care of him for as long as possible.

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