#2 The Weirdest Thing

This blogging challenge comes with daily blogging prompts. Today's prompt: What is the weirdest thing about Tom's health?

The weirdest thing about Tom's health is that he is so healthy! His health concerns are more due to function rather than illness or pain of any kind. His two biggest health concerns are:

1. Keeping his eyes healthy! Tom has glaucoma and we don't want him to experience pain or lose his light perception. He had daily eye drops to control elevated intraocular pressure and has an evaluation under anesthesia every six months to monitor his eyes.
2. Continuing to wean him from his g-tube! We hope Tom will be tube free someday soon. He is currently 50% oral fed and 50% tube fed. He gets 8 oz. of 240 calorie food in the morning and before bed, with one bolus of soy milk for calories and hydration during the day. He eats lunch, dinner and several snacks by mouth. 

Basically, we treat his glaucoma and work hard to encourage him to eat so we can get rid of his tube.

You might think I'm crazy but the g-tube and feeding issues have been much harder on Tom and our family than blindness has been. Yes, Tom's first year was a blur of surgeries and doctor appointments related to his eyes but it really slowed down after that. We adjusted and so did Tom.


In the recovery room after an evaluation under anesthesia (EUA.)

Then food issues took center stage.When Tom was between 6-8 months old his eating habits changed and he developed failure to thrive. Food refusal became constant and he fell off the growth chart completely. Extensive testing never found any cause for his food refusal. We believe it was a reaction to all the surgeries and doctor appointments he had at that time. I think he was just protesting in the only way he could. He has an iron will. He would bring himself to the point of dehydration and need to be hospitalized. Unfortunately, you cannot force a baby to eat.

After months of battling to get enough calories into him, Thomas got a g-tube shortly before his first birthday. Luckily, Tom adjusted well to the "tubie" lifestyle and he began growing in length and weight. I saw such a big difference in his health and energy levels after he started getting tube feeds. It was amazing! We were able to transition from a feeding pump to bolus feeds after a year. I can't tell you how much better that made my life. Bolus feeding is much quicker and involves less equipment. Read my G-tube Guide for more information.

working on a cheeseburger

So yes, I guess it is funny to say that someone with significant health challenges is actually quite healthy! I feel very lucky that Tom is healthy and that we are no longer weekly visitors to the Children's Hospital of Pittsburgh.