Maintaining Weight

One of the challenges we have always faced with Mira is trying to get enough calories in her throughout the day. While she doesn't have a G-tube and is able to eat by mouth, her diet is fairly limited, reduced to a consistently recognizable, nearly all-liquid diet. This makes it a challenge to give her bottles that have enough calories - balanced calories that aren't all sugar, carbs, or straight up protein, which is really hard on the kidneys. She is able to eat some foods by spoon, mainly yogurts, puddings, and pureed foods that are soft enough for her to eat without chewing. We supplement with protein powders and vitamins, but they never seem to be enough for her to keep the weight on.

While Mira continues to grow in height, she hasn't been able to keep up through her diet to maintain a healthy weight. This became evident during her weigh-in this past Thursday in the seating clinic. She had lost another few pounds since her last appointment, yet continues to increase in height. We have seen dietitians in the past through Children's Mercy regarding her weight and frankly, they haven't been very helpful or insightful visits. These dietitian appointments and follow-ups tend to be more of an exercise in calculating what she is actually currently eating, but offer little assistance in how we can get more calories in her and help us implement a balanced diet to get her weight up. That being said, we end up doing our own research and generating recipes that Mira can not only tolerate from a taste standpoint, but also making sure it is balanced nutritionally.

After realizing that her weight has again dropped over the past few months, we started putting together a reasonable meal plan this weekend, one that will hopefully get her to start gaining some weight. Mira has always enjoyed yogurts, rice milk mixed with protein powders, and squeezable fruit and vegetable packets. Unfortunately, these alone aren't enough to hit her daily target caloric intake, especially the fruit and vegetable packets, which tend to only tend to be in the 75-100 calories each, at best. We are trying to come up with creative ways to add avocado, coconut oil, peanut butter, yogurt, pudding, rice milk, malted milk, and other higher calorie foods to her diet, which is challenging. Long ago, Mira used to enjoy sweet potatoes and macaroni and cheese, and other more firm foods, but since she can no longer tolerate these, it has been difficult to have her drink anything like that, in a pureed form - they just don't go over as well when she is drinking them through a bottle. This weekend however, she has really enjoyed some of the smoothies we have put together for her, which I might add, always need to be warm - Mira will refuse to drink anything below room temperature, which also creates a challenge when everything has to be a warmer temperature.

If anyone has recipe ideas that might work for someone like Mira, I would love to hear them!