We’ve mentioned in a previous post that Callie is underweight for her age. She’s so light that she can no longer be plotted on a growth chart and she’s still losing weight. An occupational therapist has recommended a high-calorie, high-fat diet to help her gain a few pounds.

After thinking about this for several days, we’ve decided not to implement her advice right away, but to keep an open mind as we learn more about other alternatives that aren’t as dangerous to her heart, circulation and digestion.

One alternative that seems drastic but that we’re considering is a feeding tube. We know that many children with SMA have a feeding tube surgically placed in their stomachs to help with nutrition or safety if they have swallowing problems.

We’ve talked with many SMA parents, and most of them have recommended that we not wait until Callie is sick to get the tube, since her health would already be compromised. Even a teenage girl with SMA told us that getting a feeding tube was one of the best decisions her parents made for her.

We’ve known for awhile that getting a tube was a possibility. We always want to stay ahead of problems and are hoping that this might be a solution to Callie’s nutritional needs. We will post more as we learn more.

We again want to thank everyone for their heartfelt concern and prayers.