seven months

Sibyl is seven months old. Where has this time gone. I love having her as a baby so much and I'll definitely miss her squishy baby-ness as she continues to grow up. I will not miss the sleepless nights, however. She has been sick for the past week (right in time for me to take some days off of work for a dissertation vacation) and we've all been sleeping terribly.

7 months old!

Sibyl has started crawling (forward). She has been crawling backward for a few weeks but is now figuring out how to move forward. She has had trouble figuring out how to use her knees because she loves standing so much that she just wanted to walk around in a downward dog pose and would end up toppling over. 

Evan remarked to some friends that crawling style is like a fingerprint: every baby has her own unique style and no style is identical. I like that idea. 

Sibyl has also started saying "da." She's close to saying "Dada" but not quite - this is about the same age that Iris started babbling too. One of her favorite things to do is to whack me really hard when I pick her up. She whacks everything and I think I've decided that she's trying to get a sense of what the object is made of and what sound it makes. 

Have I mentioned Sibyl's favorite toys? She loves to hold these magnetic connectors as seen below. She goes everywhere with them and never lets them go. She'll toss all her other toys around but inevitably it seems like when I pick her up and take her to another room she has a connector in tow.

Sibyl's favorite toy

As for the past few weeks, we've had some visitors. My great Uncle Bob, who is 93, came to visit this part of the country for a while. Iris Skypes with Uncle Bob occasionally when my mom is visiting so she was VERY excited to meet him in person. My mom visited for the first part of August because the girls had no school and I needed someone to watch them. 

Iris and Uncle Bob

Grandma and Iris

Grandma and Sibyl

Evan, Uncle Bob, and Sibyl

Daddy & Sibyl

Grandma, Uncle Bob & Sibyl in a sleep sack

Mama and girls

I've been fairly exhausted and everything seems more dire when not sleeping enough. I finally have gotten some good nights of sleep this week and the world seems like an entirely new place. Iris has been sleeping well; I have almost nothing remarkable to report about her. She is scheduled to get a brain MRI in a few weeks. I keep my eyes out for new research articles being published about her condition. Like this one. Except - remember that Iris has R179C not R179H. There has also been some activity on our Facebook group about whether we should allow our kids to go on roller coasters and trampolines. The general wisdom is, "no." 

Our next door neighbors have two boys about Iris's age and they have a big trampoline so I've had to tell the mom that when Iris plays with the boys we can't do the trampoline. 

 

She also has recently shown me that she can write all the letters in her name. Almost in the right order. The really surprising thing is that she has no trouble doing the "S" correctly or the "R." 

 

Iris is such an amazing soul. I've been reading a children's book about Frida Kahlo to her and she loves it. The reason she loves it is because Frida gets sick and has to be in the hospital. I'm not sure what this means, but I take it as another example of Iris learning empathy and finding people who have had experiences like her own.

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:

eighteen months

At eighteen months old, Iris loves to practice putting on her sunglasses by herself and wearing other people's shoes. She has also gotten very good at saying "I don't know."

fifteen months old

The summer is flying by so quickly. There was a heat wave recently that made sleep extremely difficult. Evan got a portable air conditioner for the upstairs. Luckily cooler weather means that I'm getting more sleep, as long as I don't have any caffeine during the day.

Iris and her juice

I took Iris to the Mordecai Children's Garden at the Denver Botanic Gardens on Monday. There is a man-made creek to wade in that she loved. She also met another 15-month old girl named Iris! The mothers were amazed. 

Iris and her juice, again.

Iris is adding new words to her vocabulary every day. So far she says, "Mama" and "Dada," obviously, but her most recent additions are "on" and "up!" She's a little confused about "on" and "open" so she just says "on" when she wants something opened. And, well, she says "up" when she wants down. Her other words are a little hard to understand for the uninitiated. "Gaga" means car or dog; "gugu" means cookie; "dudu" means juice; "nana" means banana, or Nonna (Evan's mom); "baba" is anything starting with a b, mostly bear, or ball.

Her sign language is also pretty good. She uses the signs for "more"; "help"; "all done"; "milk"; "Daddy"; "owie" (or "it hurts"); "birdie"; and "book." And, of course, she points and grunts at things she wants.

Iris and her juice, again.

 Perhaps most surprisingly, she has figured out how to say "I don't know" and also it's appropriate usage. As in, "Iris, where's your bear?" To which she responds, "I don't know," if she actually doesn't know. I had taught her the sign for "I don't know" so she also uses that, but mostly just for fun.

A few days ago I had been out for a bit and when I got home I found this baby, below. Everything looks fine, right? Well if you look closer, you'll see her diaper is on backwards. Evan claims not to have noticed that he put her diaper on backwards.

What's wrong with this picture?

As for other happenings, Evan and I went on a double date with some friends last weekend and had dinner at a French restaurant after exploring Hudson Gardens in Littleton. We also had our first visitor from Pennsylvania. A friend of mine from my PhD program was making the cross-country trip to start a new job in California and he stayed with us a night. It was so good to catch up with him and it got me very motivated to keep working on my dissertation.