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.

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.

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.)

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. 

twenty months old

The last month has been mostly full of vomit. Iris is down almost a full pound but has lately been eating a lot. I have her on hemp milk now, and I think that will help a bit. I have also abandoned my vegetarian intentions for her and have been giving her (organic, allergy-friendly) chicken nuggets. Anything to get her to put on some weight in a non-dairy and non-egg and mostly non-soy way. It's not that she's allergic to those things, but they don't do good things for her belly. And eggs make her vomit.  

She had her RSV shot last Thursday and vomited that night. So the pediatrician and I agreed today that we would be creative in thinking about future RSV shots. She is supposed to have five over the course of five months. She's had two and I have no intention of letting her get another one in January. It's incredibly painful and traumatic for her to have to be held down and to get two big, huge shots in her legs. It makes regular vaccinations seem like a walk in the park. 

So we still haven't made it a full seven days without vomit since this whole thing started on November 14. I am hopeful that we'll get there this week... keep your fingers crossed. I started her on Losartan again this past weekend since it seems clear that the medication is not the thing that was causing the vomiting. She seems to be tolerating it well. 

Iris has started taking off her oxygen by herself in the morning after we put oil on the tape. Her face is red on both temples because of the tape and she hates to have us touch either temple. It definitely hurts her even though we try to be very gentle. This is a serious downside to having the oxygen off during the day but keeping it on for sleeping. 

Iris loves her morning smoothie.

Really loves it.

Iris's favorite things are playing in the park (especially swinging), reading her nursery rhymes (over, and over, and over), spinning around till she gets dizzy, looking for school buses, testing her limits with her parents, and painting with our nanny.

She has become very affectionate lately, thanks to a book called Hug Machine that she got as a present. She wants to hug and kiss everything. We went outside the other day and she said she wanted to hug and kiss the sun.

What did you say, Gama?

In the park 

nineteen months

Iris is nineteen months old today. Now that she has mastered saying, "No," she has started to excel at miniature temper tantrums. Another funny thing she does is she tries to hold all the important things at once. So, if she has decided that she absolutely must have the bouncy ball, her two blankets, and her teddy bear all at once, she tries to pick them up and walk around with them. This usually proves impossible.

Here she is smiling for Daddy.

The things I did today to deal with the tantrums seemed to work alright. Usually the tantrums start when she and I want different things, so  I explain to her that we are doing my thing first (eat) and then we will do her thing (read). Or, I tell her that we are almost done reading and that after reading we are going to go upstairs and change her diaper. She is usually very good at cleaning up after herself (when we ask her to) and I am trying to reinforce that by having her put her toys away with some regularity.

Her favorite things: baths, running, singing "The Wheels on the Bus," the moon, doggies, bears, people of all ages, and getting tickled.

As far as medical/health items...she is doing fine on her Losartan. They plan to increase the dosage slowly over several weeks. She does occasionally seem a little dizzy. I suppose this will be a life-long medication, though we haven't actually confirmed that.

She has her 18-month check up on Thursday, and will also be getting the first round of the RSV shots, which hurt a lot. I'm not looking forward to that. Friday we meet with the four cardiologists. 

Iris is doing a good job of growing. It seems strange to think that I used to be so worried about her growth. I remember the worry well, though her growth charts show that she is doing fine. She is WAY taller than most girls her age (above the 97th percentile) and has made it into the 15th percentile in weight-for-length.

Iris is above the 97th percentile for height

Iris is above the 15th percentile for weight-for-length

twelve months

At twelve months old, one of Iris's favorite toys is a rolling pin.

 

4 months old

Iris is 4 months old as of Sunday. She's definitely growing and gaining weight but still so darn skinny. She eats plenty but I wish she were a bit fatter.

Baby Iris at 4 months

Her favorite things to do these days are: to practice standing and sitting up; to put hands in mouth; to figure out the thumb sucking thing; to flail her right arm up and down when excited; to kick a lot; and to go on walks in the stroller. Oh, and to vocalize: