Showing posts with label mountains. Show all posts
Showing posts with label mountains. Show all posts

Saturday, November 23, 2013

early thanksgiving

Evan's family came in to town last weekend for an early Thanksgiving. We managed to keep Teresa and Montie from doing much work on the house. I enjoyed having the house so full -- we had Garrett in the guest room, Katherine and Jeremy's kids in the living room and Katherine and Jeremy upstairs in the meditation room. Montie & Teresa stayed at a hotel nearby.

Nonna Teresa with her three grandkids

Iris had tons of people to play with and things to watch. She loved meeting her cousins and aunt and uncles.

David, Iris, and Emma reading books
David, Iris, and Emma


It did take her a while to warm up to Garrett. His big beard really terrified her but after a day or two she was having fun with him -- especially when he sang to her. It was fun to see Garrett with a baby, it's a more tender side of him I don't often see. He was very good at trying to calm her down and keep her happy.

Iris, Uncle Garrett and Iris's favorite toy -- the star
On Saturday, we took the whole gang up to Mt. Falcon park, which is the closest mountain area to our house. Sunday was our Thanksgiving meal, Monday we went to a local playground and then to the Museum of Nature & Science.

The girls -- Sarah, Teresa, Iris, Katherine, Emma
The boys - Montie, Garrett, Jeremy, Evan, David


On Tuesday everyone had taken off except for Garrett. We took him to the Colorado History museum (a bit of a disappointment) and then for lunch at City O' City. Evan suggested that we take him there because it was close to the museum. We forgot that it was a vegetarian restaurant. Taking Garrett to a vegetarian restaurant is like taking him to church. He suffered through it. Luckily, we went to Root Down for dinner, which was a smashing success. We also dropped in to the Wynkoop Brewing Company, which was started by John Hickenlooper, Colorado's current governor and Denver's former mayor.

We had Iris with us all day on Tuesday, meaning she was out of the house for 7 hours. She did really well although getting her to breastfeed in the car was a bit of a hassle. She has been extending the time between nursing sessions and it has been making me nervous. I don't like her going 4 hours without nursing. I weighed Iris earlier this week -- she is 15lbs 7oz. She still hasn't doubled her birth weight, but is keeping on her 25th percentile growth curve.

Garrett asked me whether motherhood was all I had hoped and dreamed it would be. I had a hard time answering that question because I don't remember what I had thought it would be, except that I thought it would be way easier. From what I can recollect of what I thought motherhood would be, it is way better than expected. Even with all the things that we've had to deal with, everything that Iris does is that much more special considering the immense challenges we've had to go through. I'll always worry that I'm not doing enough or that I'm doing something wrong, and it seems very likely that she'll end up just fine. I am not sure what Evan would say about fatherhood and whether is has been what he expected. He adores Iris and loves to make her laugh. I can say for certain that even before all of Iris's medical issues were discovered, Evan decided he wanted never to have a newborn baby in the house again -- too much sleep deprivation. I am hopeful that Iris and I will be able to change his mind in the coming years.

Katherine asked us about what we wanted to steer Iris towards/away. There are many things we want to steer her toward and away from but one of the more important ideas for me is that she should have an understanding of how she can influence the world around her. I want her to volunteer and see how she might be a positive force in society. She'll likely grow up not eating much meat -- neither of us will prepare it for her at home, anyway. We want to teach her to meditate, do yoga -- things that I actually have to start doing again. I suppose my overarching goal for her is to learn what it means to be healthy and to live healthfully and then to do it.

Tuesday, November 5, 2013

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