Crazy Heart Mama

I know it’s been a sweet forever since I’ve updated you guys on Colman, but on the upside, there really isn’t much going on. And that’s a good thing!

Colman had a clinic appointment at TCH towards the end of September and there wasn’t much to report. Everything looks about the same. His heart really isn’t any better, but it’s not any worse either. The tricuspid valve is still super leaky, but his heart is squeezing okay. So we’re doing a pretty good job managing his heart failure. We were given a six-month reprieve, which is the longest between appointments we’ve had in almost four years.

His growth–or lack thereof–is still a pretty significant issue and one that keeps me up nights as I constantly brainstorm ways to sneak more calories into his day. I try to delude myself into thinking of it as a game, but in reality it is really an exercise in frustration. He’s still only 4’1″ and weighs 47 pounds. That’s less than a pound an inch. I’m happy he’s normally a pretty healthy kiddo otherwise because when I think about him getting the flu or some sort of virus, I have to swallow the panic that follows as my brain screams, Where would the reserve come from to get him through an illness like that?

Because he has no reserve. Me? If I contracted a stomach virus or the flu and dropped a few pounds, that’d be what I’d call an unexpected bonus. Colman? Well, it could be life-threatening. I try not to worry too much about the things that are completely out of my control and focus on what I can, which is practicing good hand washing and making sure everybody stays as healthy as possible. And that includes the sometimes sleepless nights where I think about ways to beef up Colman and optimize his nutrition.

I’m still adding about a tablespoon of coconut oil per day into various foods that he eats and he’s still eating really well, but it’s only been enough for him to maintain his current weight. I can’t seem to get him to gain any weight. The constant state of heart failure he is in causes his heart to chew up any calories he takes in so that he has nothing left over for growth.

However, I did make a trip to GNC after Christmas where I picked up some protein powder that’s used by body builders to gain weight and muscle mass. It’s super high in protein as well as being high in calories and fat. Colman has promised me he will drink one shake every day even though he says it tastes a little weird. I can’t get him to drink an entire shake, but I can get him to drink about a fourth of one, which, when mixed with whole milk, amounts to an extra 500 calories he wouldn’t normally eat.

Other than the constant struggle with weight, Colman is feeling pretty great physically. Sixth grade has been a little tough at times over the last few months, but he’s getting through it like a champ. I’m really proud of him and kind of amazed at how insightful he continues to be about himself and his feelings. He’s been bullied and picked on and made fun of for being so small, and he’s taken care of it in a multitude of different ways. He has a whole bag of tricks in his arsenal for deflecting and when that hasn’t worked, he’s gone right to a counselor and worked his problems out. He has some great friends who are always looking out for him and some fantastic teachers helping him keep up with his studies. Because when you have ADHD and change classes eight times each day, it takes a village.

We are lucky to have such a huge support network between family, friends, school and work. I really appreciate our little village. I don’t know where I’d be without you guys.

I just want to say THANK YOU.