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.

christmas 2014

We had a small Christmas tree this year. Iris loved it, but her favorite thing to do was to throw the ornaments, so we had to keep her away from them.

Iris is almost as tall as our tree. 

Notice the Christmas bunny. 

Evan's parents came in for Christmas and in true Morgan fashion, they helped on home renovation. Our laundry room now has drywall and paint and a counter for folding and some shelving. I hope this helps with our laundry problem a bit -- it is a beautiful counter for folding clothes.

Christmas brought lots of snow, finally. Iris got to play in the snow, but she didn't love the cold. And she thought the slush on her boots was yucky.

On Christmas Eve, we took Iris to the children's service at the Unitarian church. She loved the spectacle, and especially loved the tree. She managed to stay tolerably quiet through most of the service, but at the end, finally, she had to go outside and run around.

Evan's dad brought his copy of The Night Before Christmas to read to Iris. It was fun to have Iris share in that tradition, although she wasn't ready to sit still through the whole thing.

Papa reads to Iris.

Reading on Christmas Eve and giving me a fake smile. 

We started to open presents on Christmas Eve but Iris was too tired to hack it so the adults opened their presents after bed time and Iris finished opening her presents on Christmas day. This year she was more interactive with actually opening her presents, though at one point she had to stop and check on her bunny light.

Opening presents with Daddy. 

The bunny night light. 

Evan's gifts had a hiking theme to them this year, in hopes that we would get outdoors much, much more in 2015. Iris took to the hiking backpack very well demonstrating the idea with her stuffed animals first. 

Christmas afternoon walk

christmas 2013

A big milestone has been met: the first Christmas. It's true that holidays are way more fun with children around -- even when they don't understand a thing about what is going on.

Iris loved staring at the lights of the Christmas tree but spent most of her time working on pulling herself up, standing on her own, and banging on the piano. She would occasionally pause while banging to make sure that we were watching her.

She also really loved spending time with her Uncle Miguel. We were having dinner one night and she wouldn't stop staring at him. It helped that he kept making silly faces at her.

Iris and Uncle Miguel, #1

Iris & Uncle Miguel, #2

We managed to spend some time outdoors even though we didn't bring any snow gear. Evan and Mike went hiking one day down in White Rock Canyon and then the three of us went out for another little walk the next day.

A common Northern New Mexico scene

 Christmas morning started at the very civilized hour of 9:30am. Really, Evan and I did not get that much sleep while we were there because it was an unfamiliar sleeping area for Iris. But I imagine that our future Christmases will involve even earlier mornings.

Iris couldn't help open presents yet, so mostly she just watched people open things and hand them to her. She tried to help, but that coordination is still lacking.

A pile of gifts to open

Iris got me a very special Christmas present this year: she suddenly became a great eater. Well, at least a better eater. Apparently cardiac babies are not great eaters. Previously, we all had an impossible time getting her to take more than two bites of any type of food. It was funny to watch how quickly she could close her mouth when she didn't want what was being offered. But now, suddenly, she keeps her mouth gaping open for more food. 

Peas and brown rice, yum.

vacation

I spent most of Friday getting ready for our trip to New Mexico. I know that all babies require a lot of gear but this baby's extra gear is a real pain to procure. I had an intention to be very calm and mellow for the whole day but the time spent frantically trying to get Iris her Digoxin refill after the pharmacy botched the refill order shot me right out of any serenity. I spent a good hour or so grumbling to myself about the whole thing. It's amazing to me how many times things would have gone wrong had Evan or I not spoken up.

The good news, however, is that I got the medicine, we have extra pulse ox probes to measure her oxygen levels, we're taking the oxygen concentrator with us, and she got her Synagis shot in the afternoon (a few days early). So she's ready to go...medically speaking. She may not be ready for the six-hour drive, but we're leaving super early so as to maximize sleeping time.

I'm always very happy to go home to Los Alamos, especially for Christmas. Evan is also looking forward to the break. Here is a photo of him packing. And he just said, "I'm really excited to go to New Mexico."

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