Saturday, October 31, 2015

gi checkup

We had a routine checkup with the GI specialist on Friday. Iris has weird digestive issues due to the ACTA2 diagnosis, but they've been even weirder since August. I was explaining the details of it all to the doctor during our appointment and Iris got very embarrassed and hid her face in my lap. She's shown her ability to be embarrassed since she was a very young toddler, but this is one of the first times I've noticed her being embarrassed when I am talking about her health problems with someone.

I imagine most kids don't want their moms talking about their pooping to strangers, even 2.5 year olds. Generally, though, Evan and I do our best not to talk about her medical issues within her earshot but it's very difficult. We aren't trying to keep things a secret from her, but she's just not old enough for us to try to explain it all to her so it's better to shield her from what we can.

We know from her past visits that she has a small gallstone and that there's not much we can do for that unless we want to get her gallbladder removed or start her on another lifetime medication. We've opted to do nothing since it's small. We also know that she does not have malrotation, which is something that other ACTA2 kids have had.


Tuesday, October 20, 2015

glasses

Iris got glasses. We took her to her regular ophthalmologist appointment and he decided it was time to give her glasses. He has told us in the past that she was very far-sighted (like all kids) and that as you get older you become more near-sighted. 

He also said that he wouldn't have decided to give her glasses now but her left eye is doing more work than the right eye since it's less far-sighted, and in fact, he would rather see her more far-sighted in her left eye since we know that both eyes will become more near-sighted in the future (since that's what happens with all kids). He also emphasized that the far-sightedness in the right eye is very slight. 

While I did know that many of the other ACTA2 r179 kids have glasses, I hadn't realized until later that almost all are far-sighted, and many need bifocals. So I guess it would be a safe bet to think that Iris might need bifocals in the future.

It's hard to get too upset about her needing glasses, though, considering that we originally thought she had aniridia, a condition far more vision-threatening. And she's so darn cute in these glasses. I took her to pick out her frames and she decided she wanted blue ones since blue is her favorite color. (I'm not sure how long blue will hold on to that title.)