end of summer

Hiking at Lair o' the Bear

The end of summer surprised me this week.

Iris's daycare had it's official "back to school" night - our first ever. She goes to a Jewish preschool that is on my way to work. I haven't mentioned it much, but she's been attending 2 and then 3 days a week since April, though with several short breaks over the summer -- some voluntarily (vacations to California and New Mexico) and some not (recall hospital stay).

Iris is possibly the most social and outgoing toddler I've ever met. She loves kids, especially. Even with all that, she still doesn't like going to school in the mornings. She always says, "No kids. No school," while we drive there. But she very rarely cries when I leaave and instead goes off and plays either by herself or with another little child. I think she has two difficulties that contribute to her anxiety at school. One, not everyone understands her; and two, she does not follow directions well. I very frequently have to count to three before she obeys me or I have to tell her what the consequence of her disobeyance will be ("I'll take away your blue blanket...").

Part of the surprise at the end of summer comes because we've been so busy right up until the end. We have welcomed Evan's best friend and his family to stay with us in our house for a while, which has been great fun for us all. Iris loves the three new kids we have roaming around our house. We don't have a huge house so it is admittedly a tight fit, but Evan is right when he says that it wouldn't be as easy with any other family.

We also had a vacation to California for Evan's parents' 40th wedding anniversary (wow). Iris got her first taste of ocean (literally) and spent hours running through the house screaming with her cousins.

Playing in the California sand

And, lastly, the excitement of getting ready for school has been supplanted by preparing for a new baby sister, coming in January. I keep forgetting that I'm pregnant, though recently it's been harder to forget. Iris, on the other hand, announces it to people frequently: "I have a new baby sister!" and "I'm a big sister!"

New baby sister

twenty-two months

Iris is finally starting to sleep better in her big-girl bed. Around the beginning of the new year I bragged that she was starting to sleep throught the night, "for real." Well, that didn't last too long. Especially since we changed her bed around on her. She loves her bed, but it's hard for her to stay asleep sometimes. We've tried to make her bedtime routine very, very predictable and I've gone back to the idea that she still needs milk around 9:30pm or 10:00pm in order for me to have a semi-restful night. Evan is the one who usually gets her ready for bed, brushes her teeth, washes her face, and reads to her before giving her milk. Tonight as I was leaving her room she said, "Daddy, come!"

When not asleep, Iris prefers to run everywhere she goes. She has also managed to get a couple time outs for jumping around dangerously on the couch. At twenty-two months old, she repeats everything we say (for better or worse) and she is really starting to perfect the tantrum. Her latest obsession is my brush. She threw a little fit this morning when I tried to give her a comb instead of the brush. SHe likes to try to comb her hair by herself, but that just lends to the unruliness that is her hair. 

We have been working on our yoga moves -- the latest attempt is tree pose. She can balance on one foot for just a split second. She really loves to do happy baby pose. In order to get into the pose she kneels down on the ground, puts her head to the gorund first (so that she won't bang her head when turning over) and then turns her body around so that she is on her back. Then when she has a hold of her feet, she yells, "Happy Baby!" 

Twenty-two months old

Balancing on one foot

The weather here has been a little insane. We woke up to snow this morning (Wednesday) after having had several days in the 60s. The good weather inspired Evan to plan a super busy weekend full of hiking, bike riding, and an attempted swimming trip. Iris did really well on the hike, possibly because I was trying to feed her for the entire 3-mile trip. Evan also started singing a song to her that seemed to keep her entertained. The words went something like, "Hiking, and mommy, and trees, and sandwich, and birds, and mommy, and hiking, and backpack, and Iris." He also had so much energy that he was running back and forth with her when she started to ask to be let out for a little while. He would bounce up and down with his arms out like wings. She loved it.

Backpack walk

Roxborough State Park

I mentioned previously that I had gotten a glass flying pig from a mystery person at work. Well, this same person (I assume) sent another little gift a week or so ago. I'm not sure what to call it, so we just call it "This Guy." Iris calls him "This Guy" now, too.

This Guy

Hugging This Guy

The handwriting of the mystery gift person

As far as medical things go, we see Cardiology on Friday. Iris will have an echo and we hope to see no increased dilation in her aorta, and continued lack of pulmonary hypertension. She is now on her full dose of losartan (when we can manage to remember to give it to her). It looks like we will be starting Iris in day care in March, which Evan and I are both excited about...though there are many logistics to be worked out. Evan still hasn't actually seen the day care yet, so we'll visit it on Friday before the Cardiology appointment. 

Then, next week I'll likely take her to the pediatrician to get her second to last dose of Synagis, which is the semi-vaccine for RSV. It's way worse than all the other vaccines -- way more of it, and it's two big shots that go into each thigh. Iris has been asking about shots a lot lately. We've been reading "Elmo Visits the Doctor" book a lot and I think she's going to handle the next round of shots okay... but they're still awful. But I'd rather subject her to the trauma of getting the shot than to the trauma of being hospitalized for a severe case of RSV. And let's just leave the whole talk of measles for another time. 

At twenty-to months, Iris's favorite things are her stuffed animal bears, looking for buses when we go outside or are in the car, singing "Wheels on the Bus," and saying "Call Daddy" to get me to call Evan on the phone. 

growing up

My visit to State College was just long enough to make me really sentimental. I started the PhD program four years ago with a bunch of strangers, whom I now count as dear friends. I miss them. I have started to become much better at just being thankful for the past experiences rather than wishing them back into being. But there are still times when I wish for some remnant of the past to come back into the present. And the truth is, life would be much simpler if we all just stayed in one place. It takes a lot of time to develop a new community and although I have friends here in Denver, Evan and I haven't really reached a sense rootedness.

I got back to Denver on Saturday evening just before Iris went to sleep. She was sort of dazed when I walked in the door. We hugged for a long time and then I took her upstairs to put her to bed. Evan had taken off Monday since we were supposed to be on vacation, so we ended up having a whole weekend together. We took Iris to City Park on Monday for a bike ride and then we went to a Thai restaurant for lunch. By the way, in case you're wondering, most of the high chairs we've used in restaurants are broken, which is a real annoyance when you have an active baby trying to grab your food, not to mention being a safety issue. Iris actually did really well until we were leaving the restaurant and then she cried most of the way home. She was very tired and hungry in spite of eating some of the rice noodle soup I ordered along with the food I had brought for her.

In other news, we started Iris in day care this week.

And then we pulled Iris out of day care.

There were a host of reasons that we made this very difficult decision but the main reason was that the teacher(s) were pretty forceful in putting the kiddos down for nap time. By that I mean that, for the toddlers who had trouble transitioning from lunch to nap, the teacher(s) would pin the children down to their mats for long stretches of time and cover their heads with blankets all while the child is crying and trying to wriggle out of being pinned.

I struggled with how to handle the situation. At first I thought it couldn't actually be as serious as I thought it was. And then I realized that if anyone had ever done anything like that to my daughter, I would want to know right away. So then I wondered if I should try to tell the parents. I called a local non-profit that rates the quality of child care centers and told them what I was seeing. They agreed that the behavior was not acceptable. In the end, I talked to the director of the school and she said she'd address my concerns right away and she said that what I was seeing was not appropriate. But we no longer felt like we could trust that Iris would be well cared for in that room with that particular teacher. So now we either need a new day care or we need to find a nanny. Or I'll just stay at home forever.

At one point I had a realization that this is what we would be doing for the rest of our lives -- dealing with unpleasant situations in order to protect our progeny. You might think that I would have already had this realization. Like say, on any number of times we've been in the emergency room.  But for some reason this was a particularly difficult situation, probably because I had developed some rapport with the employees at the day care and my instinct tends to be one of not wanting to rock the boat. I guess it's some stage of growing up when you realize that the only thing that really matters is that you make sure your child is safe. And if that requires boat-rocking, then so be it.

The proposal defense went well, by the way. I'm now ABD, which means "All But Dissertation." Now I just have to write the darn thing.

Oh, and if you're with me in thinking that Evan should write more on the blog, post something in the comments. In addition to being funny and witty, his recent post quelled my nerves while I was gone. He claims not to have time to blog but I think that he might respond to external pressure.

ten months old

I've been looking at photos and videos of Iris over the last ten months. She's growing so well. She's particularly growing well now that she's off digoxin. Her ten month present to me last night was to take 4 oz from a bottle. However, her Valentine's Day present to me was to get a nasty stomach bug and vomit her insides out this morning. She's doing fine, but definitely under the weather for her first Valentine's Day. 

Iris on February 11 -- ten months down

For her first Galentine's Day, Jill and Dara came to visit. The girls had fun together but are not sure how to touch each other without grabbing and pulling.

Dara & Iris

gratitude

Dara and Iris before Thanksgiving dinner

I intended to spend more of today in a state of gratitude. I started off fairly well -- feeling thankful for the hot water in my shower as it got progressively cooler the longer I stood there. The day got away from me with hours spent with friends and, well, when you're in the moment it is sometimes hard to remember to be thankful. We spent a couple hours with Jesse & Amanda (and baby Owen) at their house in the morning. And then in the afternoon went to Jill's parents' house for the big meal. They are Jewish so we also got to do the lighting of the candles with them. Jill's parents got Iris a Hanukkah gift: blocks. I had been thinking that she doesn't have enough blocks and balls around so I was glad for this gift.

So now at the close of the day I'll spend some time feeling and expressing gratitude. I have been thinking a lot about how we can teach Iris to be thankful. This is a difficult concept to grasp -- even for adults. I suppose it's a habit or a state of being that can just as easily be adopted as it can be forgotten. I happened to read this article about how to raise thankful kids today and was reminded, yet again, of how difficult this whole parenting thing is. Parenting requires you to be the best version of yourself you can be, or at least requires you to attempt to be the best person you can be. And you have constant reminders when you have failed to be that best person.

In the past, Evan and I have been known to wonder aloud whether we are "thankful enough," as if there is an appropriate level to be achieved. That misses the point, of course, because being thankful is all about the feeling of gratitude in the moment. There is never "enough" because there are infinite moments in which one might feel thankful. It can't be a constant state of gratitude, of course, but even taking a few minutes each day to let oneself feel deeply thankful would be a great improvement to the well-being of most people.

I am thankful for pediatric cardiologists. I am thankful for pediatric ophthalmologists. I am thankful for oxygen concentrators. I am thankful for sunglasses. I am thankful for technological advances. I am thankful for my husband. I am thankful for my daughter. I am thankful for my parents, my brother, my extended family and for Evan's family. I am thankful for our house and for all the work Evan has put into it. I am thankful that we live right across the street from a gym. I am thankful that we will be able to afford daycare starting in March (if just barely). I am thankful that Iris got the RSV vaccine and the flu vaccine. I am thankful for getting closer to sleeping through the night. I am thankful for my book club. I am thankful for my Penn State friends and colleagues. I am thankful for friends. I am thankful to live in such a beautiful state. I am thankful for our meditation cushions. I am thankful that the worst seems to be behind us.  I am thankful for morning naps.

Iris and Evan having a morning nap

overly optimistic

Iris had an ophthalmology appointment today. I'd been eager for this appointment to get a better idea of the state of Iris's irises. And if she needed glasses I wanted to get them on her as soon as possible. 

Upon meeting Iris for the first time, most people do not notice that she has any particular eye issue. It's only when Evan and I point out that her pupils are huge does anyone seem to take note. By all accounts, she tracks very well and has no problems with peripheral vision or grabbing on to what she has set her sights on. Knowing this, I was not particularly anxious about the appointment. Even though she is at greater risk for glaucoma and cataracts, it seems too early for those to intrude. 

After waiting for slightly too long a time, the ophthalmologist breezed in to the examination room. A fellow was with him, so he began the encounter by quizzing her on WAGR syndrome while simultaneously typing notes on the computer: "What do you know about WAGR syndrome?" She thought for a moment, "Let's see... Wilm's Tumor, aniridia, G is for...genitourniary, and the R is...renal?" I nodded as she finished the G and the R. "That's right," he said and continued talking -- though I have no idea what he was talking about because following him made my head spin. I did stop him fairly quickly and mentioned, "Yes, that's WAGR syndrome, but Iris doesn't have it. Genetics tested her and she doesn't have the gene deletion." He did some tests on her eyes to see how well she tracks, shined some lights in to check out the rest of the eyes and also tested the eye pressure to see where she stood in regards to glaucoma. 

When he was ready to begin telling us [Evan was on speakerphone] about his assessment and conclusion he started with, "I don't want to be overly optimistic..." and he went on to say that Iris looks great and has no need for glasses at this point. She is slightly far-sighted but he doesn't think she'll need glasses for quite a long time. He also said that she might start having trouble with cataracts years earlier than most adults, but maybe not till her 40s at the earliest. "She is probably one of the top two cases of aniridia I have seen, her eyes look great." 

Evan asked about how much care we need to take with her eyes and mentioned the sunglasses we have for her. The ophthalmologist said, "Don't get an ulcer over trying to keep the sun out of her eyes when you're in the car. She'll close her eyes if it gets too bright." He did say a floppy hat is a good idea. We were very happy to hear this good news and though we certainly may not have the same good news in the future, it seems like an auspicious beginning.

Speaking of that floppy hat and those sunglasses, we took a trip to the mountains together over the weekend:

 Iris is down to 1/16L of oxygen, which is almost nothing. I am hopeful that we'll have her off oxygen by the end of the year. We are going to Los Alamos for Christmas, though, and since it's at 7,300 ft, she might need oxygen there. 

We also went to visit Jill & Dara today. These girls are really starting to have fun with each other and we're looking forward to seeing them grow up together.

Dara's older sister, Liliana, had her 3rd birthday party this past weekend and we went to the place they do music class. I think that I will start doing a music class with Iris in January and am very much looking forward to it. 

And finally, we did some family photos a few weeks ago. The photographer is a nurse in the Cardiac ICU at Children's and took care of Iris the first couple days after her surgery. (Here's her website. Denver people -- her prices are really great since she's not a professional). She got some really great shots even though Iris was really sleepy and needed a nap. Here are a couple of good ones.

photo credit: Visible Life Photography

photo credit: Visible Life Photography

visitors & the gift of time

We have enjoyed having some visitors recently. Two weekends ago my friend Susan brought her two boys for a little visit. Gabriel & Iris made friends quickly.

Gabriel and Iris taking a photo break.

This past weekend Evan's parents came out to help work on the house. They stayed very busy -- as is the custom of their people -- doing several days' worth of work on each day.

Teresa cutting trim and baseboard.

The good news for them is that I think they've had more time to play with Iris this time than last time they visited.

Montie & Iris

Iris learning how to fly

We took Teresa & Montie to the Denver Botanic Gardens on Sunday afternoon. Teresa has a deep love of flora and so this visit was more educational than previous visits. The weather was completely gorgeous for their entire visit but we are likely to have snow again soon.

Morgans at the Denver Botanic Gardens

We have even more visits in store. My dad arrives today for a short visit to see Iris and to give me some time to work on my dissertation proposal. The Morgans will return for an early Thanksgiving in a couple weeks and then my mom is coming for the month of December so I can work on my dissertation proposal. 

It has been fun to have all these visitors around. Iris loves being with people and is very happy to have more playmates. 

It is a great gift to have our family members give us their time, particularly since it is the thing that Evan and I most sorely lack -- free time for self-care or for relationship maintenance or sleep. We couldn't have survived without all those gifts of time. I suggested to Evan that we not buy each other Christmas gifts this year since the work on the house has been eating up most of our extra money. Really, we need free time to spend together more than anything else. Perhaps we'll just have a "perishable gifts only" rule. We don't need more dust-collecting stuff, but we could do with a box of oranges, for example.