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.

backpack walks

We officially started a new family ritual this past weekend: Saturday morning hikes. It has been an unofficial ritual before. We are anticipating a lot of fun mornings with Evan singing at the top of his lungs to entertain Iris. She loves "backpack walks" and has been putting her stuffed animals in the backpack to tell us that they're ready to go out for a hike.

 

Saturday was also the day that Iris had a very weird ailment for most of the afternoon. Her belly started hurting her intensely and cramping up. She wouldn't eat but would drink hemp milk. She just wanted to sit in my lap and wouldn't let anyone else touch her. She kept saying, "belly hurts." Evan and I decided this was due to the fresh mozzarella that was on the pizza she had eaten the afternoon before on our way to meet with the gastroenterologists. She had had a similar episode around the time I first tried giving her cow's milk (which happened to be the weekend of my dissertation proposal defense, thus resulting in the Daddy-Daughter Staycation). 


She did recover by Sunday, thankfully. I was pretty exhausted the whole weekend so Evan took Iris out again for a backpack walk on Sunday morning and I got some work done on my dissertation.

As for our most recent visits with the specialists, Iris had an ophthalmology appointment and a gastroenterology appointment this past week. Ophthalmology went fine, as it always does. Her eyes are totally normal aside from the fixed dilated pupils, which was once thought to be aniridia and is now called congenital mydriasis. I think that the ophthalmology fellow who first diagnosed her was biased by her name "Iris" and so was bound to think "aniridia" first. Anyway, whatever. We're very thankful that her eyes are doing well. After the next visit in six months the doctor said we can move to yearly visits.

The gastroenterology appointment went fine, aside from the exceedingly long wait we had due to a backup of patients. I don't fault the doctors for this. I do fault the American healthcare system and hospital management for trying to cram in too many patients. Evan and I were glad to get some additional information on how Iris's gut health looks from people who study these organs.

Basically, she doesn't move things along fast enough by herself so we need to start giving her MiraLax daily to help avoid constipation. They did tell us that we can't rule out malrotation because ultrasounds are not the best method of observing the intestines, and the ultrasound that we did get did not go down far enough to see the duodenum. So...that means that at some point we will probably do an x-ray with her swallowing some kind of barium or other radioactive liquid. We're not sure when we'll schedule this. I also need to figure out when we are going to do her next MRI. The neurologist wanted to see her back in 3-6 months, and we've reached the three month mark. And we haven't seen our pulmonary specialist since before Iris's ACTA2.r179c diagnosis, which was in December. We were supposed to see her in January and then again in March. I guess I know what my homework is for tomorrow...

I hate to end on that note, though. So here's a picture of Iris making a joke. She put two sippy cups in the collar of her shirt and thought it was hilarious. She has a great sense of humor and is great at creating her own fun.