Evie's Skillz, and a Face Palm Moment

Part of having a 1 year old seems to be that I'm bound to be asked if Evie is walking yet.  I cringe inside, because she hasn't even been crawling.  I knew that she would likely not be crawling by 12 months, and I know that every child progresses at their own pace, but it still hurts a little to say no. 

It really helps me when people ask "What is Evie working on," instead of "Is she walking yet?"  I want to hug them when they ask the question this way, because I've just been spared having to give an explanation. Usually they are people who have no idea about Evie's medical history, but it still smarts a bit.  At this point, every baby progresses at their own pace, and I know that some kids don't even walk until they are 2 without having Trisomy 21.  So it's still "acceptable" that she's not walking yet.

However, Evie is doing pretty awesome.  She is at about a 9 month old's motor skills, and she gets better by the week.  With having to wait until she was 5 months old for her heart surgery, some delay was especially inevitable.

Hi! I'm Evie! I like to babble in the car. Mostly La la la's. I am also in a big girl car seat now!

When Evie was about 3 months old, we were in the Cardiology waiting room and there was a dad with a ~2 year old boy and a baby.  The little boy was adorable, and I could tell that he had Down Syndrome.  I did the creepy waiting room thing and snuck peeks at them for awhile, and then said hi to the little boy when he came towards us.  When I said, "How old are you?"  The dad looked at me and said, "He's not really talking doing the talking thing yet."  And I just said, "Oh, ok!"  Face palm.   Now I understand.   His dad probably had to explain all the time why his son didn't speak yet.  He was very matter of fact about it, but later I wished I had said something like how every kid had their own pace, or just told him that our baby has DS and I just think his son is adorable.  Sigh.  20/20 hindsight.

All of this makes me so much more aware that when I meet a new person and don't know anything about their baby, I should ask more open-ended questions like "What's her personality like," or "Does she have a favorite toy?"  I never understood until now.  Kudos to my friends who are so much more sensitive to this than I used to be, and have always been asking about what Evie is working on lately, or what her favorite food is these days.

So what IS Evie working on?

Crawling. Evie does not want to bend her knees when she is on her tummy. She splays her legs straight out and resists us when we try to bend them for her.  Then she lays her head down in silent defiance. This girl is feisty!   Gradually, each week, she resists a little less, and we've found her rocking back and forth on her knees every so often.  We make sure we clap and cheer when she does that!

Drinking milk.  Evie hated cups for awhile, mainly because she hated her formula so much. We recently tried whole fat milk, and she doesn't hate that as much, so we will keep offering it to her in a Tilty cup to get her used to drinking again.

We learned about the Toddler Jukebox app from our PT.  Evie loves to listen to it while she is eating!

Signing.  Evie can wave and high five.   She is ready to learn sign language!  We are trying to teach her "All Done,"  "More," and "Eat."  I have to confess that I watched the famous Signing Times video and got bored and couldn't finish it.  If anyone has suggestions for anything more riveting, I am all ears.  In the meantime, Evie just humors us while we wave our hands around in her face.  One day it will click.

Growing teeth.  Evie's 2 lower front teeth came in, and I have been waiting for them to be big enough so I can take a picture!  Welcome, long-awaited teeth!!   I am so happy to see you, even if Evie now bites me when she gives me an open-mouthed slobbery kiss on my cheek. 

Happy springtime-in-the-middle-of-winter to all our friends in Boston!   Thankful for great weather, great friends and family, and most of all, thankful for a happy Evie!

Evie's Consumer Reports--Eat, Play, Travel

Evie's been trying out some new products. We thought we'd share and maybe someone else will benefit from them too!

We are learning that the weight of food on a child's tongue is very important as they learn to swallow with low muscle tone.  Evie has made some big strides in eating as we gave up on trying to get her to drink yucky formula (in her opinion) and gave her all the Siggi's full milk fat yogurt that she wants (nice creamy weight).  She eats the ones with 4% milk fat, with some purees mixed in.  In the world of g-tube weaning, it's all about getting as much fat in a healthy diet so the child will still gain weight and not need a g-tube.

Evie at a Chinese restaurant sitting like a big girl in a high chair!

Our new favorite product is the Travelmate Mini. It solved the dilemma of the Early Intervention shuttle requiring a car seat to take her to play group. You can attach the car seat to the dolly, and then strap the toddler in their convertible car seat, and wheel them away.  This will not only help us for baby playgroup transportation, but also when we travel with her in the airport, now that we can't use an infant carrier because someone is too tall!  As a bonus surprise, the wheels light up when you roll along.

Evie has developed a strong hatred for the Nosefrieda.  It serves its purpose for cleaning out her nose, but I have to hold her down while she screams like I'm killing her slowly.   This nasal aspirator was suggested as a musical solution that is just as effective. I've only used it once since I got it, but Evie was less annoyed by it.  It plays different songs while you suck the snot from your loved one's nose. Props to our Facebook DS friends for suggesting it!

When we went home for Thanksgiving, I decided to try out this baby Cetaphil lotion, because Evie's cheeks were quite dry and reddened. The almond and calendula oil ended up helping Evie's eczema on her face quite well!

Action shot below.  Evie has all these nice toys, and chooses Mommy's Coach purse.

There are a few favorite toys in the picture above.  The Mozart Cube, the Winkel Ball, and the OBall. Evie finds it easier to grasp the Winkel Ball and the OBall, and likes to shake them.  The Mozart Cube is fascinating to her.

Violet the Talking Dog does not get old.  Evie still looks forward to seeing her every morning after she wakes up.  Putting her next to Evie while she was eating apparently helped our nanny to feed Evie 23 bites, which is her new record!

Snapfront fleece footed pajamas.  Do you know how hard it is to find footed sleepers that SNAP in 12 months and 18 months sizes?   If anyone finds some in 18 months size, please let me know!

In closing, Evie would like to recommend pineapples.  She loves sucking the juice out of a piece of pineapple.  YUMMY.

Evie's wedding...I mean birthday party

Hi everyone!  This is Evie!  I turned 12 months old last month.  Mommy has been very busy, so she asked me to blog.   I had my very first birthday party.  The theme was Penguin Winter One-derland.  Mommy was addicted to something called Etsy and Pinterest on her phone.  All I know is that there was a lot of colorful paper around and I was not allowed to play with it! 

With Mommy before my party

So many people helped my Mommy with my party.  I think she would have gone crazy without the help. She said it was like planning a wedding. I don't know what a wedding is, but I do know that I have a lot of friends!  We had a hot cocoa bar, lots of food, and tons of games.

The baker at Stop and Shop went all out in making a penguin winter wonderland cake for me!

Mommy freaked out 2 weeks before the party because almost 40 kids were coming to my party, plus about 50 adults.  I don't know why she was scared--something about 40 kids with nothing to do and running around in circles.  Auntie Tina came to the rescue and helped us to think of activities.  We had Magformers, play dough, a coloring contest, rainbow looms, beads, and toddler bowling.  I was too little to play with the big kids, but they said they had fun!

We did not make the awesome coffee filter streamers--that was left over from our church Christmas concert!

I had a nice nap right before the party, and woke up in time to wave hello to everyone.  I get many compliments on how I wave.  They say that I am graceful. I don't know what that means. I just like to watch my hand wave back and forth in front of me. 

In the middle of the party, Mommy and Daddy thanked everyone for supporting our family and loving me, Evie the Extraordinary, in the past year.  They all sang a nice song called "Happy Birthday" to me, and I loved it.   It was a nice personal concert. 

And then about 80 pairs of eyes stared at me while I sat in my high chair.  I don't know what they expected me to do.  They put a penguin-shaped cake in front of me and just watched me.  Auntie Kirsten spent a lot of time on my cake--why would I touch it and ruin it? 

So Daddy took my hand and swiped the cake with it.  I was angry and didn't know why everyone laughed when I yelled.  I put my thumb in my mouth and tasted the frosting, and it WAS intriguing, but I was too angry to try it again.  Mommy and Daddy felt sorry for me and picked me up from the high chair.   They thought something was very funny.  

After all the excitement, it was time for a big nap. Grandpa and Grandma took me to a quiet room to have some sleep. Some nice aunties and uncles helped to clean up.  All in all, it was a good day.  Mommy said she will never throw a party that big again.  But she was happy about how it turned out too!

Thank you, everyone, for celebrating that I finished my first year strong!!

Winter Colds, and graduating to big girl status

I'm pretty sure that at least half of the city is sick right now with a cold.  Evie has been sick EVERY SINGLE WEEK since the end of November.  She starts out with a stuffy nose, then a cough, and then gets better, and the following week gets sick again.  Thankfully, this was a healthy week for her. We were on a roller coaster of no sleep and then recovery.  

When she's sick, Evie inevitably ends up sleeping on top of mommy just so I can get a few hours of rest in a row.  So precious, yet so hard.  

However, one thing is different. I was in mortal terror of her getting sick when we left the NICU last February. Now I am not. That is pretty huge.

Last week, poor Evie was so congested that we had to take her to Urgent Care to make sure it wasn't going to her lungs. We are just weaning off Sildenafil, so there's that added sensitivity about her lungs. 

We count ourselves lucky so far. When we went to the hospital to make sure she didn't have RSV or bronchiolitis,  I was afraid that I would have to spend the night at the hospital. 

Evie is such a champ. She went with Mommy and Daddy to the doctor and patiently sat through everything that was done to her. Rectal temperatures are the pits!! 

Some of our friends with Down Syndrome have had to go to the hospital due to colds turning into something more.  It seems like our little ones are more at risk during the winter season.  I thought I could relax about people washing their hands before touching Evie, but weeks of watching Evie suffer  are making me more vigilant again.  She will grow out of it as she gets older, but we just have to get through the winter!

Just for fun, a map of the most frequently unwashed parts of our hands. 

And now back to sterilizing my cell phone...

Signing off,
Evie's germaphobe mommy

Jumping and Friendship Crafts with Evie

This Youtube video was at first made to showcase Evie's first real jump on a trampoline. Then it became a video with a message about mak...