Sleep Woes.

Ellie slept through the night at eight weeks.

Despite the fact that we were first time parents, I chalked that one up to amazing intrinsic parenting skills.

And then, she had heart surgery, and all bets were off.

Ellie has consistently been waking up at 5:00 am or earlier since August, 2011.  We are tired.  We've put her to bed earlier, later, with more routine, with less routine, worn out, protesting, happy, you name it.

The kid just doesn't seem to need as much sleep as any other human.

When she's sick or teething, it's even worse.  When I'm sick, all I want to do is sleep.  Not Ellie.

She had been grumpy and up all night for two nights.  Last night, she went to bed at 8:30 am and started chatting at 4:40 am.  The birds began to chirp and Ellie was ready to rock.

She woke up happy and ready to play.  Fortunately, Matt took her downstairs and I stayed in bed until 6:45.  So far today, under the supervision of her sleepy parents, Ellie has..

* Eaten cereal and consumed her milk
* Squeezed a squeezie (both to eat and to play with her food, making a mess)
* Watched her favorite episode of Signing Time, "Leah's Farm."
* Made art
* Lost her pants*
* Built with Legos
* Done a puzzle
* Played with her Vera Bradley bunny.  (Thanks Aunt Terri.  My kid is started early.)
* Played with farm toys
* Played with zoo toys
* Played with her giraffes on the farm.  Yes, giraffes.  Plural.  She has many.

I read early on that often, children with Down syndrome require more sleep than their typical peers.  And while Ellie has a much better ability to sleep anywhere in weird positions, her extra chromosome hasn't delivered the promised sleepiness.

At least she's cute.

Plus, we've had some summer-like weather, although the week ahead is supposed to be rainy and gross.  We took advantage while we could.

* About those pants.  At Ellie's latest evaluation, I was told "A two year old should be able to remove ALL of their clothes."  Um, I'm cool with this particular delay.  We are trying to keep her clothes ON.

How we Roll.

We celebrated Mother's Day by attending a Cubs game and going to brunch downtown.  After brunch, we went for a short walk, and Ellie decided she should push the stroller.




Enjoy these photos!  I hope you had a lovely weekend!

The game involved a lot of tears during the first four innings.  Although scoreless, the crowd continued to cheer.  Ellie did not like the cheering.  She did not like the snacks.  She did not like anything.  Finally, around the fifth inning, she decided that baseball is okay, and she started clapping for everything and everyone.

"Daddy, if I walk all the way to the White House, will the First Doggie come play with me?"

A Mother's Day Post.

Dear Blog Readers,

Ellie here.  I gave Mommy the day off for Mother's Day.

Did you know that I am the luckiest?

I have three grandmas.  And one actual aunt.  And like 48,789 (I can only count to three, so I'm guessing) other people who are called my "aunt" but are other relatives.  Or not related.  I'm not sure.

So even though this is technically Mother's Day, I am giving a lot of love.  More than just for Mama, but for all my other grandmas and aunts and fake aunts.  Also, grandmas and aunts and fake aunts never ever ever ask questions like "Why are you awake at 4 am?"  They just love and accept.  I hope Mama is taking notes on that.

Anyway, this post is for all my aunts and grandmas and other people who love me.

They all say I'm perfect.  My grammy even likes to call my mommy to tell her that the assessment people are wrong when I take tests.  I think Grammy should give the tests.

I get spoiled with clothes and toys.  Now that I am giant and can't even wear all my 9 month pants anymore, Mama tells everyone with a baby girl to borrow clothes from my old outfits. My grandmas and aunties keep me very fashionable.

On Mother's/Grandma's/Aunt's/Fake Aunt's Day, I just wanted to say "THANK YOU" for being the bestest and most supportive family ever.  I'm glad that this year, no one had to support me with any surgery or anything.  This year, I just got support in causing trouble, and that's good, because I am excellent at causing trouble.

I love you all.  I know there's a lot of people I love that aren't in these pictures.  Blame Mommy.  I can't save photos yet.

Love, Ellie

Eligibility.

As many of you know, I have attended a fair number of IEP eligibility meetings.

This week, I attended my first from a position of "mom."  The results of Ellie's evaluations were discussed, and in the end, we determined that yes, she is a child with a developmental disability.

Since Ellie basically didn't cooperate with the tests, she scored pretty low.  And even if she did cooperate, she would still qualify as a child with a developmental delay.

So although we've know that Ellie has Down syndrome since seven months before her birth, as of yesterday, she officially has a disability for school purposes.

In three years, Ellie will be reassessed.  But around first grade (I need to check the dates depending on her IEP date), the DD label will no longer hold and Ellie will need a new label, and we will cross that bridge when we come to it.

In the meantime, my mom will be left wondering what Ellie's delays are, because "Ellie is perfect."

More on ALL of the grandmas tomorrow.

For now, check out Ellie's slide skills.

PS. Ellie, who will not cooperate in PT, practiced her walking and stair climbing and sliding a ton for.... our 11 year old neighbor.

PS. #2. Remember when Ellie wrote about Patchy, the "woof" cat?  She got a note back.

Dear Grown Ups. {Ellie Guest Post}

Dear all you grown up reader people,

It's been awhile since Mama had me post on here.  I think that maybe is because I've been working a lot on my favorite word ("no!") and Mama thinks I'll just type this:

"NO no NOOOO no no No no NOOO nnnnooooo NO."

But I have way more to say than that.

First of all, I learned to blow bubbles.  Before Ms. Lisa gets all impressed, you should watch this video.  Mama calls me a cheater, and I call me "efficient."



Did you see those bubbles?  No blowing involved.

Anyway, I'm really working hard on my bubble skills.  Sometimes, Mama gets a little crazy and says "No" to bubbles.

No clue why.

Then, I try to bust into the bubbles by myself.

That Mama.  Really no fun at all.

Anyway, I'm doing pretty well.  Today, my mama is taking me to take tests to see if I get to go to a special school next year.  She said she's scared because strangers will ask me to do things, and there was something about my favorite word in there, but then I stopped listening.

I hope they ask me to blow bubbles, because I am excellent.

Also, I hope they ask me about animal signs and noises.  I can say "duck quack" and "pig oink" and "cow mooo" and "dog woof" and "Patchy woof."

What, you don't know "Patchy woof?" Patches (that's the grown up name - I like Patchy) is Ms. Kelly's cat.  I know Patchy is a cat.  That's why Patchy says "woof."

Sometimes, Patchy seems frustrated with my barking, but I just try to speak cat language.

Anyway grown ups, I am getting very good at art, too.  And I'm working on walking, slowly.  I took my baby doll for a walk yesterday.

I also got a wand for doing "Bippity Boppity Boo," a.k.a. "Bip Boo!"  My mommy told you yesterday, but failed to include a photo.  My wand is pink.  And has a star.  And hits stuff.  It's amazing.

Have a great day, grown ups!

Love, Ellie

PS. Thanks to the magic of technology, this post will publish while I'm at my official toddler tests, so they can decide about my school.  I want a school with cookies.  I should probably tell the test people about cookies.

Play.

Ellie's current favorite games include...

"Baby," which involves a lot of bossing around the baby.  "Dance, baby!"  "Walk, baby!"  "Jump!"  "Hug!"

"Hi baby!"

"Bubbles," which is a mess.

"Chalk," which is a mess.

"Singing" ABCs, EIEIO, and my new favorite, "Bippity Boppity Boo!" from Cinderella.  Ellie recently got a wand, and she waves it around yelling "Bip boo!"

Who is More Stubborn?

We all know that Ellie has been stubborn since before she was born.  (If you don't know this, you can go read the archives about how my "preemie" was a day late.)

After repeating the phrase, "Where the heck does she get it?" over and over again for the last two years and two months and one day, I think I have the answer.

Mama.

I've been fairly determined to break four hours in the marathon.  

Today, I ran my fourteenth marathon.

I finally broke four hours, which means that I may be as stubborn as Ellie.

Also, a big public "thank you" to my awesome husband who has dealt with my early morning runs with grace.

Ellie only attends races for the bagels, but since she's a good encourager, we let her hang out.

"Ellie, smile at Daddy!" "No. Bagel."