Monday, January 11, 2016

the new year

In preparing to write my annual "welcome new year" post I re-read my posts from the past two years (here and here). I hope it comes as no surprise to anyone else that some of what I wrote turned out to be wrong.

It's benign stuff, for example, at the end of 2014, Iris wasn't sleeping through the night as I thought. Turns out that Evan had been staying up late to work and had been giving her a bottle around 9:30pm every evening and that would get her to 4:00am. Now, however, I am fully correct in saying that Iris IS staying in bed all night long (even if she's not asleep the whole time). We are bribing her, to be perfectly honest. She gets a fruit leather every morning if she stays in her bed all night long.

Stretch Island Fruit Leather Variety Pack 48-Count, 0.5-Ounce Package (Pack of 2)
The "I stayed in my bed all night long" prize. Grape is her favorite.

As she gets older, I'm sure I'll come to regret some of the bribes and other methods I've used to elicit good behavior, but for now the sleep is too sweet to sacrifice (says the lady who's about to give birth any day). Her sleep patterns have been totally weird this year and was sometimes staying up until almost 9:00pm, which was awful. We had a sleep study done at the beginning of December to find out whether there was any physical reason that she wasn't sleeping well. I don't recommend the sleep study to anyone.

They found that she has very mild obstructive sleep apnea. It is so mild that Evan and I decided not to follow up with anyone about it; my perspective on her sleep has improved now that I'm getting more sleep.

Another milestone we reached with Iris is that she is now only wearing big-girl undies. I hesitate to say that she is potty trained. We're not in a rush and I want her to keep tabs on her own bodily urges. She doesn't stay as hydrated as I'd like, particularly since it's so important for her medical condition. But she does use the potty when she needs to and otherwise fights us every time we suggest that she go. 

The spunk never stops.

To be fair to her, she is much better about using the potty at school where she indulges in peer pressure to conform. She started school at Temple Sinai preschool two days per week in April and moved to three days in September. Her teacher is a treasure to us and makes Iris feel loved and secure while she's there.


Watching Iris's social development has been a total joy this year. Her teacher tells us that she is very empathetic with the other kids and tries to make new kids feel welcome and comfortable. When she is playing with older kids she wants to do everything identically to them. She'll repeat every action and every word they say. Part of me hates this, of course, since it can produce such bad results in adolescence. But for now I think it makes total sense and she has learned so much (some good and some bad) from other children. 

At the end of 2014 we had just gotten Iris's ACTA2 r179c genetic diagnosis. We met with the researcher who discovered the mutation on New Year's Eve of 2014 and had a whole new (and pretty unwelcome) world open up to us. I think it took us a good seven months to adapt to it all. I amassed a set of reading material about death and grief, some of which remains unread. Somewhere along the way I got my fill.

I had made up my mind to quit my job and to quit my dissertation and focus on trying to advance research on this genetic mutation and the associated risk factors (i.e. pediatric stroke and stenosis of the arteries). And then at some point I realized that choosing that path would be too stressful and that I couldn't let this diagnosis govern our whole lives.

It's probably not a coincidence that Evan and I joined a church. Evan had been going with me to First Universalist of Denver prior to our receiving the diagnosis and he had even suggested we join before then, but it took us until July to take the plunge. Evan probably hates that I'm writing about this as he hasn't fully accepted that he is what one might call a "church-goer" now, even if it is a church where people with atheist/humanist belief structures are welcome and attend regularly. It's an easier adjustment for me since church has always been a part of my life and my identity and I know that weekly attendance makes me a better person.

The latter part of 2015 went by in a flash. We took trips to New Mexico (twice) and to California to visit family and we welcomed Evan's friend and his family to live with us while they adjusted to life in Colorado. Evan got to climb his first 14rs (mountains that are over 14,000 feet in elevation) and I was jealous that I had to sit at home and be pregnant. And then we bought a house and moved!

As we begin 2016 I haven't fully grasped the huge change that is about to come once this baby arrives. I have 12 weeks of parental leave from my job that I'll chop up into smaller bits to last until the end of May. After that I'll return at a slightly reduced schedule. We'll be doing a lot of improvising, I am sure.

One goal we (I) have for this year is to get off the internet and our phones a bit more. I'm not sure how drastic this will be, but I'm hoping to replace screen time with family sing-alongs.  

Saturday, January 9, 2016

christmas


Two little Christmas trees - I'm resisting getting a really big one. 
Christmas was quiet this year. My mom is here to help with the new baby (whenever she arrives) so it was just the four of us. This was the first year Iris really understood anything about Christmas (by which I mean, that there are presents to be opened).

Iris came to church with us on Christmas Eve and really loved watching the musical performances and she got to hold the candle for "Silent Night."

We opened presents the next morning. She got really excited about the first gift she opened (some clothes) and was totally overstimulated by that for a little while. She then settled down and continued to open her other presents.

Probably my favorite memory of Christmas this year is the sing-along that Evan and Iris had on Christmas Eve. We have a little video of it.











Friday, January 1, 2016

patience

Patience is not my strong suit.

Baby number #2 is due tomorrow, January 2, and I am frustrated that she hasn't made her debut yet. I was convinced that we'd have an early arrival, but no dice. I'm also still totally freaked out at the prospect of having two children and I have no idea how we are going to make it work.

In the last few days Iris has started shouting at my belly, "Baby, come out! I want to play with you!" She has also been helping my mom rub my feet, which is especially cute.

Thanks to my mom's free babysitting, Evan and I have seen more movies at the movie theatre in the past few weeks than we have in the past two years. Three. It's possible we will get a fourth in before the baby comes. I'm also doing my best to cherish the little cuddle moments I get with Iris that will certainly change once the baby arrives.

Basically, though, I'm not sure how to be patient as I grow increasingly uncomfortable and wish to sleep on my stomach again. For now, I'll go drink some raspberry leaf tea and work on finishing our Christmas cards... 

Friday, November 6, 2015

courage, part II

Earlier in the summer I wrote about courage and whether Evan and I have been courageous in coping with Iris's diagnosis. I was struggling to figure out what the appropriate actions were for us to take in the face of the pretty gloomy prognosis. I considered quitting my job and quitting my dissertation to focus on being a mom and on raising money for research on the ACTA2 mutation and pediatric strokes. It's easy to find purpose in life when faced with what seems like a constant life or death situation. Your purpose becomes life. It's that simple and that complicated.

As the year has worn on I've continued to struggle with what my next steps should be. I've come to the conclusion not to make any drastic changes. I was a small signature away from quitting my dissertation altogether and somehow I've made the decision to keep going on it, same with my job. If I have to come up with a logical justification for it, I guess it would be: I don't want Iris's genetic mutation to become the most important thing in our lives. It is always going to play a leading role, but I don't want it to be the only thing that we do and the only thing we are about.

Back when we first got her diagnosis - not even a year ago - we decided that we wanted to focus on making her life (and our lives) meaningful and always to emphasize the idea that a long life does not equate to a meaningful life.

The most meaningful thing I think I can do for myself and for my family is to cultivate and spread opportunities for joy. This state of being has almost nothing to do with what we do or do not accomplish; instead, it has everything to do with our perspective and what we choose to surround ourselves with.

With that in mind, I want our lives to be as ordinary as possible and I want for us to find joy in the ordinary.


Thursday, November 5, 2015

halloween

This was Iris's first legitimate Halloween. We did dress her up last year (as a dog) and passed candy out to the neighbors. She didn't understand why we were so excited to get her dressed up but when we showed her herself in the mirror she tolerated the costume a bit longer. Really, though, we didn't do much to celebrate. 

Iris as a dog in 2014

This year we had our housemates to lean on for Halloween oomph. Troy and the kids carved a pumpkin, which put us light years ahead of where we were in 2014.

Gutting the pumpkin
We also took Iris trick-or-treating this year, even though we're not going to let her have any of the candy winnings. She dressed up as a koala and genuinely enjoyed dressing up. She is at an age where she wants to be EXACTLY like everyone else and so it's easy to get her to dress up if everyone else is doing it too. I'm not sure I love this inclination, though it does help with potty training.


A koala, Snoopy, a sunflower, a zombie marshmallow, and a mermaid.


The day after Halloween we asked Iris what she remembered about going trick-or-treating. She said, "dogs." There was a dog that scared her at one house. I asked her if people gave her anything when she was at the houses and she didn't seem to remember the candy...we left it at that. 




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.)