Monday, December 30, 2013

The Big Christmas Wrap-Up

It's hard to believe that Christmas has come and gone, again.

It was our third wonderful Christmas with this girl. 

We spent most of the week with my family in their new little house, after they downsized this summer.  It was a fun, chaotic, crazy mess of people and food, and cousins in close quarters.

I keep thinking that "next year Cora will understand Christmas and she'll be excited."  But it hasn't happened yet so far.  Although she did enjoy signing "Santa," "magic," and "Merry Christmas!"

And she definitely got into gifts, once again.  We kept her gifts pretty modest this year, as we have in the past, knowing that she will be spoiled by other family members, and that we don't want to overwhelm her and ourselves with a ton more stuff.  But the gifts that she did get were special, indeed.

One of the best is her new big girl doll, Lulu, given to her on Christmas Eve.  Grammie hand-made a doll with all up-cycled materials for each of her grandchildren this year, complete with small wardrobes, and spent probably at least a hundred hours between the two.

Kai was a little faster at opening his big boy doll, Twig.

But Cora took her time until her Lulu came into view.  The first thing she did when she saw her new dolly was to give her a big fat kiss and a hug.  I think it melted her Grammie's heart.

What a happy girl! (Especially after stripping Lulu of all her clothes... one of her current favorite activities.)

And baby cousin Carys got her own first baby, Clementine.

Cora enjoyed the rest of the morning, unwrapping and playing, watching her cousin get excited, and getting snuggles from some of her favorite family members.

Seeing cousin Kai open his "Very Merry Christmas Corderoy"doll and a small matching doll for his new friend Twig was one of the most fun moments of the morning.

And the rest of us spent an awful lot of time doing this...

Crowding around my sister Mira's two-month old daughter Carys, who is just as captivating and lovely as you can imagine a baby to be.  

The cousins were pretty interested in her too.  Cora kissed her, touched her, smelled her and said "stinky," and patted her little bottom, announcing, "booty."  I'd say so far it's her most successful baby interaction, and it made us all very happy to see.

Kai loves Carys too, and asked his mom if he could take her home. But every once in a while, in a very almost-three-year-old boy fashion, he tested the limits.  Like when he wanted to see if Carys wanted to wrestle with a big stuffed lizard.  Luckily Carys is a tough girlie.

Overall it was lovely and over way too fast.

And although we spent from Thanksgiving to Christmas trying to keep Cora from getting sick, including postponing family visits and making anyone with a tickle wear a mask in our house, we were foiled again!  Some of my family members had been sick, so we tried to keep away until it seemed the contagion had died down, but on the last day of the trip my dad came down with cold symptoms and Cora quickly followed suit.

She seems to be doing OK, although she's started coughing a bit.  And boy, do I hate hearing a cough from her.  It's one thing when you can count on a cold to be a cold, but my girlie has had way more bouts of pneumonia than I am comfortable with already, and she is pretty susceptible.  So we're keeping our fingers crossed that her lungs stay clear, and that we can soon be thankful that she only got a small cold.  Of course, Nick and I seem to be falling sick too, so we are capping off our happy holidays with time at home, resting under lockdown.

It feels way too familiar after such a long spring of illness.

Here's to hoping for a healthy 2014.

Tuesday, December 17, 2013


We had quite the treat this weekend.  My sister Erin, her husband Jonny and their son Kai came to our house to visit!

We had a lovely time sitting around in our jammies, taking the kids to see a music show, visiting OMSI, the local science museum, and celebrating my birthday with a fantastic breakfast.

But the really exciting part was watching the two cousins interact and even play together.  Cora has slowly been getting more comfortable around kids over the past couple of months, so I was looking forward to seeing how she'd do around Kai. The last several times they've traveled across the country to visit, Cora's response to Kai has has ranged from wary to terrified.

But this time around she warmed up pretty well.  They were able to play with the same toys and games on more than one occasion.  She even signed, "I love you" to her big cousin.  I can't wait for them to be able to spend more time together when we go up my parents' place for Christmas.

Sharing a puzzle at OMSI.

Showing Kai her favorite apps.

Monday, December 16, 2013

Reindeer Games

Last weekend I learned a fun new thing about my husband.

We were planning out our day, when I suggested that we go to a nearby nursery to show Cora some reindeer.  He gave me a funny look and said, "You mean deer..."  I told him that, no, I meant reindeer.

He gave me another one of those funny looks and told me that reindeer aren't real.

After laughing for a good while, off we went to see the reindeer.

I am surprised that Cora actually smiled in this photo.  She was an unhappy mess during the whole 7 minutes of our visit, most likely because she detests cold weather.

To commemorate Nick's new discovery, here he shows you some facts about reindeer.  

Turns out they do more than pull Santa's sleigh.

Thursday, December 5, 2013

This and That and a Christmas Tree

I've been remiss in posting much of anything these days.  My actions have not been living up to my intentions.

There have been a couple of noteworthy things from the past few weeks that are worth sharing.

First off, she had a cardiology appointment, the first one in two years.  And it went great!  I had anxiety that we'd have to hold down a screaming girl for her echo, or that even worse, she'd refuse altogether and would have to schedule one under anesthesia.  But I shouldn't have worried.  She giggled through the EKG, pulled off her own stickers, kept asking for them back, and then sat in my lap and watched Curious George while the echocardiogram was performed.

The results were as good as last time.  No problems with valve leakage, which is pretty rare with that type of surgery.  No problems whatsoever.  She doesn't have to go back for another THREE years! 

So that was exciting news.

She also recently had her evaluation with the school district as she prepares to exit Early Intervention (for those that aren't familiar, it's the in-home special education program for children birth to three years old.)  In Oregon, IEPs don't start until a child is 5, so Cora will still have an IFSP.  But she will be graduating to a new program and a new team, and will be leaving behind the beloved teacher that has been with her since she was a tiny baby.  That sad day will be coming way too fast!

The evaluation itself surprised me.  I was able to choose that they NOT perform a standardized test, which, due to Cora's defiant nature, would probably have revealed that she had no measurable skills at all.  So they observed her and asked me questions.  Overall the report was OK.  Much of it seemed pretty accurate and listed goals that seem reasonable for her.  But there were a couple areas where they obviously underestimated her and suggested goals that she has mastered long ago.  I guess when you have a child who doesn't perform on cue for strangers, or who gets distracted by a huge pile of toys and doesn't want to be directed to "boring" activities, that's what you get.  I plan to write a letter for her file and list the things that she is already able to do, and disagree with the portions that don't sit well with me.

In two weeks we will meet with her current Early Intervention team and her new Early Childhood team and set goals for services.  We aren't planning on having her start preschool right when she turns three.  So she will continue to get services at home, but with a new team.  She will most likely wait and start in September in a more traditional private preschool, rather than go to the school district's special education preschools.  For now that seems like the best choice for us.  Although I know she will likely benefit a lot from the social aspects of preschool, I really don't think there will be any harm in waiting an extra eight months. 

Other than that, we've been indulging in winter traditions, trying to coax Cora out into the cold, and listening to lots of Christmas music.  We will have family in town again soon, and then will be at my parents' house for Christmas.  The rest of the month is bound to be a wild, crazy, busy and fun adventure.

I'll leave you with some photos of us getting our third Christmas tree with Cora.  It was way better than the tears that accompanied last year's visit to the tree farm.  And she has even enjoyed helping decorate. 


Happy Holidays!

Saturday, November 30, 2013

Family Time

We've been lazy and food-stuffed over the past few days.  We're hanging out in pajamas for way too long, avoiding the outside world, hanging around with family, eating leftovers and enjoying the calm.

But we will be venturing out soon.  In the meantime, some glimpses into the last few days at our house.

Hanging with Daddy, Grandpa Mike and Grandma Pam

Making pumpkin pie.  My, what a good helper!

Story time!

One of my favorite parts of the week has been watching Cora gradually get more comfortable around Grandpa Mike.  In the past year or so she's been more nervous around men than women. And she doesn't get to see her Grandpa as often as we'd like.  So she usually keeps her distance.  But this time, she came around to some snuggles, and even christened him with his very own name:  "Bop bop," said while signing "Grandpa."  Pretty cute, indeed.

Baby Adelyn is getting so big!

Cousins.  This is about as close as they get.  Notice how Cora needs to be held in place.

Uncle Nick is so funny.

My sweet little niece.

Hoping your time with family and friends was as lovely as ours.

Monday, November 18, 2013


We've been on a pretty long and slow path in our quest to get a decent night's sleep around here.  I've blogged about it before, although it's been a while.  And although things have improved, it's been a constant struggle.

Before Cora had her tonsils and adenoids out in early 2012, it was not uncommon for her to wake up 50 times a night and to need help to get back to sleep every time.  When you're singing Hallelujah when you get a solid 1-hour block of sleep, you can resort to pretty desperate measures.  Ours included doing whatever it took to get her to sleep as quickly as possible. 

So we co-slept.  Since she had significant sleep apnea, it also helped alleviate our nervousness over her breathing.

Since her tonsillectomy, things got a little better.  But still, she'd awaken quite a few times a night and always need help going back to sleep, often waking for hours in the middle of the night. 

Eventually, she got a mattress on the floor next to our bed, where she'd spend part of the night, and then come in with us, snuggled up face-to-face with her Daddy until morning.

But yesterday, we took a big step:  we got her a real toddler bed and we moved it INTO HER ROOM! Cora's room at our new house has been a play room up until this point.  But now, it's her honest to goodness bedroom, and she couldn't be more thrilled.  (You may notice Cora's unusual shirt-wearing style in these photos: she was also learning to take off her shirt yesterday.)

We're not expecting any sudden or drastic miracles.  Last night she took a long time to get to sleep, and then slept in her room until midnight or so, when she came back in with us.  And I imagine it will take some time.  Our hope is obviously that she can sleep longer in her own bed and get used to being in her room. 

But this is our first real big step.  It feels exciting and a little scary too.  While I was having my own pangs yesterday realizing that I'd be going to sleep in a room without an easy-waking little goose in the corner, I suddenly didn't feel ready.

And I wasn't the only one, apparently.  Even Nick had his own moment of sadness, as he looked at the empty space in the corner of our room where her little mattress had been.

But it's time.  Right now my little girlie is snoozing away in her own little bed, having her mid-day repose.

I'm crossing our fingers for the three of us.

Monday, November 11, 2013


Does learning to slurp up noodles count as a milestone?

It seems to me that it should.  I'm sure Cora's occupational therapist and speech therapists would be proud. 

 Last night my good friend came over for dinner and some catch-up time.  I spent the afternoon making chicken pho from scratch.  There's not much that satisfies in the same way, especially on a crisp fall day.

Photo by Christine Shelton

Usually I give Cora's pho a spin in the blender, like she wants the rest of her soups.  But last night she had nothing to do with that.  She wanted to eat it like the rest of us did.  Watching her sit at the table and feed herself with a fork like a big girl (overlooking the noodles I had to scrape off the floor afterward, of course), makes me pretty happy.  It's not often that she shares the same meal that we do in the same form, either due to her allergies, her issues with texture, or her picky nature.

My little eater is coming up in the world.  And she knows good soup and good company.

Tuesday, November 5, 2013

Why I'm Still Nursing My Almost-3-Year-Old

I've been having a bit of blogging withdrawal, and will be writing some more in the next few days.

But for now, check out my new post our ongoing breastfeeding story on What to Expect.

Why I'm Still Nursing My Almost 3-Year-Old.

Thursday, October 31, 2013

My Favorite Super Hero- 31 for 21

Well, 31 for 21 has come to an end.  Down Syndrome Awareness Month has only a few short hours left in it.

I realize that many of my posts don't have much to do with Down syndrome.  It is something that is a part of our lives, yes, and it affects many things.  But it is certainly not the biggest thing.

Down syndrome awareness is a good step.  You have to first be aware to begin the step that is most important: acceptance.

There is still a long way to go, but I have a lot of hope.  There are many people working hard to get there every day and are helping pave the path that my daughter will be walking.  We are a part of it, and you can be a part of it too.

But it is Halloween, after all, so I can't sign off without sharing a few photos of my sugar loving girl on her first happy Halloween.  In the past she's been dressed up and taken to parties where she mostly just cried.  But today, she got to eat her first Halloween candy (poor deprived little girl.)  And she mostly put up with us taking her trick-or-treating to a few houses in our neighborhood.  (Although she did yell and scream when I gave candy to the kids that came to our door.  She did not want me to share "her" candy.)

I give you the Silly Signer.  Yes, it is our made-up super hero.  Or super villain, depending on her mood.

Humoring me.

The Silly Signer is off!

We told her that trick or treating involves candy, so she's pretty excited.

The pumpkins next door.  Cora loved them.

Feeling a little nervous outside with all the kids running around.

She needed me to carry her to the doors.

You can't see it, but she's grabbing a handful of Skittles. And showing off her "I love you" cape.

The Silly Signer strikes again!  Here she is running off with the Skittles.
Running away from me because she thought I was going to take away her candy.

Happy Halloween!

Wednesday, October 30, 2013

Making Big Strides- 31 for 21

When it comes to life with Cora, you really get to practice patience.

Although I can often see her making steady progress in some areas, it is often painfully slow.  It's not uncommon to find that it can take her a year or more to master learning to do something that most children do in a month or two.  So we have learned to appreciate the little accomplishments, the small baby steps that gradually add up.

Right now, though, it seems like she's making some incredible progress in several areas.  It's really exciting to see.

Probably the most obvious development is in walking.  Since I came back after my weekend away from her, she is suddenly walking around a lot more.  Probably more than half the time while she's in the house.  When we're outside, I still hold her hand much of the time, since it's much harder to walk on uneven surfaces.  But she is getting there, and it is an exciting thing to behold.  She's also been climbing like crazy.  Just this morning, I turned around to find her sitting in her high chair trying to buckle herself in.  Yikes.

And then there's speech.  Communication has always been a strength for Cora, but speech has been fairly difficult.  Although she has a large receptive and signing vocabulary, she has a hard time making the specific sounds needed to form spoken words.  She started saying recognizable words shortly after turning one, and although she says quite a number of words, her articulation hadn't improved much until recently.  Now she is learning to pronounce a couple of ending consonants, like "cute" and "up."  She is starting to figure out diphthongs, like in "hi," and "bye," and many of her words are starting to sound a little clearer.  It's still a slow process, but it's been wonderful to see.

She is even improving her fine motor skills.  In addition to feeding herself pretty well, she can now put on her socks, pants (most of the way up), and sometimes get on her shoes and shirt.  She loves to help cook and clean, and definitely seems to have the "clean gene" that only certain people in my family are blessed with.

During pumpkin carving last night she was thrilled.  She drew on her pumpkin, helped scoop out the seeds, put the lid off and on, and played shape sorter with the shapes that Nick helped her cut out.  It was pretty fun for me to see her actually get excited about carving her own pumpkin. 

The glee on her face when she saw the jack-o-lanterns lit on the front porch was pretty cute, indeed, and she loved showing her pumpkin off to her Early Intervention teachers this morning.

It's pretty exciting to see this explosion of learning and development.  She seems proud of the fact that she is able to do more and more all by herself.  And, even though I feel a little wistful watching her grow up, it feels good to know that even though she is taking her time, she is getting there.