toots

Evan and I went on a date last night and on the way home we started reminiscing about our early days. Strangely, that reminiscing took the form of trying to figure out when we started passing gas openly in front of each other. I'll spare you the details, but I bring it up because Iris is increasingly showing she's ready to advance in the progression from diapers to the potty. We all talk about going potty all the time. And so in our conversation, Evan and I talked about our "toots."

I'm not pushing the potty all that hard on Iris, mostly because it feels like so much extra work to get her into undies and out of diapers. But, Iris has recently started pushing us by telling us, "I need to go potty." She wasn't really doing the same for poo-poos until last night when she got hit by a big, huge stomach bug that kept us up most the night. She insisted, "I need to go poo-poo!" Over, and over again. Somewhere around 3am I thought for sure that she would be only using the potty in the morning. That didn't exactly happen, but we've made progress, for sure.

We started informal potty training a long time ago with pee-pee stickers and pee-pee prizes. Now we've moved on to poo-poo stickers and poo-poo prizes. (The prizes are wrapped packages of chalk and crayons.) We read books about using the potty and Iris likes to inform us that, "diapers are not forever," which is the title of one of her books.

We had two doctor's appointments this week. The first was her 24 month check up. She was very scared and kept saying, "No shots! No shots!" Technically, she was scheduled for her second dose of Hep A, but the pediatrician said that since she's already had her first dose of it, we could wait just a little while to help ease her anxiety. That was a relief. Nothing special to report, otherwise. Iris is developing well. Not sleeping well, though.

The next day we saw our pulmonary specialist. Thankfully, the pulmonary meetings tend to be some of the more boring appointments because Iris is basically doing okay with her lung development, though she is still on oxygen when she naps and when she sleeps. She is showing improvement, slowly. A minor concern that we'll continue to keep an eye on is that Iris some times breathes fast. She doesn't pant, but it's just a little faster than I'm comfortable with and I worry that she'll develop asthma.

Her pulmonary hyptertension has resloved (about a year ago), so we found out that some of the pulmonologists wanted to enroll her in a big study. It's a long term study looking atchildren who have had pulmonary hypterension that has resolved. They don't use any genetic indicators, which is a bummer. They are hoping to enroll up to 1,000 children across 8 children's hospitals in the US.

Our specialist said that if we fly this summer it's possible that we won't have to rent a concentrator for Iris. This is really good news for us. Lugging the concentrator on a plane with a toddler doesn't sound like the most exciting thing to do on a vacation.

Iris borrowed our specialist's necklace during the appointment.

birthday

Iris finally understood that everyone at the party was there for her when we all gathered around the cake to sing "Happy Birthday." Her face lit up at the line, "Happy birthday, dear Iris..." And she successfully blew the candle out all by herself.

I was very excited for her birthday this year so we decided to invite a bunch of people over to hang out in our backyard. Evan's parents came to town, as did my dad. (My mom couldn't stay for the party because of some appointments she couldn't change back up in North Dakota. But we'll see her again in a couple of weeks.)

Iris and Granddad looking at apple blossoms

Iris with Nonna and Papa.

 In case we were going to forget that Iris is now officially a toddler, she reminds us by constantly saying, "No." Most of the time I then give her two options and she's happy to choose between one of the options. Maybe not my favorite feature of toddlerhood. Something much more exciting is Iris singing the "Itsy Bitsy Spider."

twenty-three months

Iris has outgrown the onesie that I have been using for her month-by-month photos. I blame my tardiness in posting on the loss of that onesie. (It's not actually lost. It's just in our "too small" pile, now). I'm now preparing to start counting Iris's age in years rather than months. That'll take some getting used to. 

Wearing her Easter outfit from Nonna & Papa

Just making a silly face

My mom has been visiting for the month and she has taught Iris the story of the Three Little Pigs. So Iris loves to say now, "Once upon a time, three little pigs..." I've done a bad job of getting photos of the two of them together but they sure do have fun and Iris wears my mom out. She has tons of energy.

I've recently come around to the idea that maybe Evan and I haven't been giving Iris's diagnosis its full weight. We were talking to someone recently and explaining the whole situation with Iris. We are able now to glide over the details pretty easily: there is definitely a second heart surgery in our future, possibly another medication to add if a valve needs to be replaced; she may have brain surgery to help increase blood flow and possibly surgery on her intestines if they find that she does indeed have malrotation. I manage six specialists and have multiple appointments with each of them every year, Iris is on three daily medications (not including the oxygen when she sleeps). And her longevity is not at all a sure bet. Kind of the opposite, actually.

To share all of this information at once gave me some perspective: it's a lot to deal with. Perhaps we haven't been fully acknowledging exactly how big of a deal Iris's health problems are. We have acknowledged it in a sense: we can talk about it freely without being brought to tears anymore. I spend a lot of time thinking about how we'll shepherd Iris though this part of her life without making it her entire life. And we have a growing list of books to read to help on all related aspects.

But I'm not at all sure that we've allowed our lives to catch up with the reality of how stressful the diagnosis is. Neither of us has really taken much off of our plates to make space for the added work of caring for a daughter with special medical needs and an extremely rare genetic diagnosis. Evan is working hard, as always, and I'm technically working full-time and working on my dissertation. 

I have been able to come up with some very creative work arrangements thanks to my extremely accommodating supervisor. But it also seems like I should either figure out how to reincorporate my dissertation into my life or just decide to let it go. And, of course, I want to spend time with Iris while I can.

We are very excited about Spring. Here's some fun we've been having recently: