Tagged with CHDs

Embracing privilege

The medical review board is supposed to meet tomorrow and make a decision as far as listing Colman for a heart transplant. There are a few different scenarios that could play out tomorrow. The MRB could make the decision to list Colman, table the decision because they feel like he’s not quite sick enough or decide … Continue reading

Confession time

I have a confession to make: I hate Jump Rope for the Heart. Then another confession to make: I hate that I hate Jump Rope for the Heart. Yes, I’m totally conflicted on the subject. I know it’s a good thing as far as raising money for our school. They teach kids the importance of … Continue reading

God bless cataracts!

Something about turning thirty-nine today makes me wish I could skip it and head straight to forty. Maybe because when I say “I’m thirty-nine,” I feel like people think I’m lying. Not that I’ve ever cared what anybody else thinks, but I feel like I can actually hear the “Sure you are, Honey,” that flits … Continue reading

Let’s talk about time management

As I’m typing this, I’m listening to the hubs make horrible retching sounds while muttering under his breath, “Why on earth would she use the self-cleaning function on the oven while we’re all here in the house? What is she trying to do–kill us?” At least I’m pretty sure that’s what he’s muttering because he’s only said … Continue reading

Just Keep Swimming

We made it through the first week of school and I have to count that as a huge WIN! After a lazy past few weeks at home, getting the boys out the door was a major adjustment that included lots of yelling “FOCUS!” to all three boys. Three boys, three different schools and three morning drop-offs. It’s been hectic … Continue reading

Peanut Butter, Peanut Butter and Peanut Butter

Colman had his yearly well checkup last week with our pediatrician. We’re pretty sure, based on all of Colman’s measurements from the various doctors we see, that he hasn’t grown any in the past year. Our pediatrician is sending the data to Texas Children’s Hospital so they can add that to Colman’s file. I don’t … Continue reading

“I really need her in the free, please.”

Finally, I spoke with Dr. Dreyer from Texas Children’s Hospital about a week ago.  I’d been emailing the transplant coordinator back and forth, but had still not heard from him.  The heart team was supposed to present Colman’s case at conference the Monday after his heart cath, but they ended up not getting to it. … Continue reading