My Stubborn Little Miss

A ONE-derful {Giveaway.}

2012-02-13T05:30:00.226-05:00

Ellie will turn one on March 4.

How the heck did that happen?

(From the NICU to the swings.)

To thank you all for reading this blog and sharing our journey, a giveaway is in order. Some of you have cooked dinners for us while we were in the NICU. Some people I've never even met have sent sweet gifts to Ellie during her hospital stay. Many of you have prayed, emailed, and offered encouragement. You've been forgiving of the fact that I have no idea what happened to the "thank you" notes I was writing during Ellie's cardiac ICU stay. You've laughed with us, cried with us, and most importantly, celebrated with us. Whether we know you in real life or not, you deserve a thank you. And if you're new, welcome! Consider this a "welcome" gift.

The following items are up for grabs, thanks to the very generous vendors featured here. We're talking about over $200 worth of great stuff. One winner per prize, because we're sharing the love. That's right, "Happy Birthday to Ellie," but presents for YOU!

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Prize #1: The MAUDE - Large Filigree QUATREFOIL Turquoise Dangle Earrings from HooplaHoopla. ($12 value.)

Check out HooplaHoopla here.

These lovely earrings will be sent out to compliment your spring wardrobe. Not the big winner or want multiple items? Get free shipping when you buy two or more items and use the code "FREESHIP4U" at checkout.

(Photo courtesy HooplaHoopla.)

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Prize #2: Custom Photo Book from CrosstownSocialClub ($35 value.)

The designer says: "My books are untraditional and a little raw. I like things that are different and stand out, steering away from cutesy, but can absolutely do it. I need the color and design requests of all customers; once your inspiration is provided I will create one memorable treasure to fill with your favorite picks." I love 'em! Check out CrosstownSocialClub here and on Facebook.

(Photo courtesy CrosstownSocialClub.)

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Prize #3: Personalized Burpcloth from Handmade By The Millers. ($22 value.)

Check out Handmade by the Millers on Facebook. The burpcloth you select will be monogrammed with the name you choose. (What a fun shower gift!)

(Photo courtesy By The Millers.)

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Prize #4: Shabby Pink Sophia Dress from Vintage Stitches. ($32 value.)

Check Vintage Stitches out here and here and on Facebook. This dress will be custom made to match the size of the lucky little girl who gets it.

(Photo courtesy Vintage Stitches.)

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Prize #5 and #6: Eleanor Roosevelt Print from Back to Her Roots. ($17 each value.)

Two winners will each receive this print. I love the quote. Check out Back to Her Roots here, on Facebook, and on Twitter.

(Photo courtesy Back to Her Roots.)

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Prize #7: $20 gift card from Jolie Berry. ($20 value).

The winner will be emailed a gift code for $20 to use at this shop. The "Ellie" headband is my favorite.

(Photo courtesy JolieBerry.)

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Prize #8: Butterfly Necklace with Handstamped Children's Names from DistinctlyIvy. ($16 value.)

One lucky mama will get her child(ren)'s names on this beautiful butterfly necklace. (And if you're not a mama and you win, I bet you know someone who would like this!) You can check check out DistinctlyIvy here and on Facebook. Can't wait to see if you're the winner? Use the coupon code "10PERCOU" for 10 percent off your order.

(Photo courtesy DistinctlyIvy.)

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Prize #9: You Are My Sunshine Sign from Rachel Repurposed. ($18.95 value.)

One lucky winner gets this sign, in honor of our bright ray of light, Ellie Claire.

(Photo courtesy Rachel Repurposed.)

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Prize #10: Your Choice of Print from Lexiphilia. ($10 value.)

One winner will be able to select the print of their choice from Lexiphilia. I would love this one for Ellie's room.

(Photo courtesy Lexiphilia.)

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Prize #11: Any Hat in Any Size from That's Sew U. (Approximately $25 value.)

My personal suggestion is that the winner select a sock monkey hat. You can pick any hat you like, though.

(Photo courtesy That's Sew U.)

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Prize #12: Home is Wherever I'm With You Print from DearEmmie. ($12 value).

In honor of Ellie's two hospital homecomings this year, one winner will receive this print. The same seller creates these portraits, too. Check out DearEmmie here and on Facebook.

(Photo courtesy DearEmmie.)

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Prize #13: A Matryoshka Doll from Charlotte's Mama.

Ellie has a new friend who is coming home to her family soon. We can't wait. Check out Charlotte's blog here and her Reece's Rainbow page here. And say a prayer that Charlie is with her mommy and daddy quickly.

The winner's doll is coming home with Charlotte, but here's a picture of one to give you an idea.

(Thanks, Wikipedia.)

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Prize #14: House Rules by PunkinandPeaches. ($20 value.)

One winner will receive the "House Rules" sign.

(Photo courtesy PunkinandPeaches.)

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Prize #15 and #16: Wine Rose Earrings from Scene Not Herd. ($12 Value.)

Scene Not Herd sponsored the very first giveaway ever around here, and Holly is back with another sweet gift for you all. Check out Scene Not Herd on Facebook, and fall in love with these pretty little earrings. Two winners will each receive a pair of these lovelies.

(Photo courtesy Scene Not Herd.)

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Prize #17: Necklace and Earrings from Lexi.

Lexi blogs over at Mostly True Stuff. She also makes jewelry. And is funny. And lives near me. And has an adorable daughter with Down syndrome. See? Awesome. Oh, and her jewelry is awesome, too. The earrings are made with sterling silver (hypoallergenic, great for super sensitive ears). Lexi's shop is currently under construction, but I'm pretty sure if you email her, she'd let you buy something. (I didn't ask her about that. But I bet it's true.)

(Photos courtesy Lexi.)

***

Whew! So, how do you get to claim one of these fantastic prizes as your own?

How to enter:

#1: You must leave a comment on this post. (You can share a great birthday memory, or just tell me what prize you want to win!)

Optional extra entries:

#2: For an extra entry, you can "like" My Stubborn Little Miss on Facebook, but comment here to let me know you did.

#3: You can also "follow" My Stubborn Little Miss by clicking the "follow" button in the top left corner. Leave a separate comment here for that, too!

#4: Add all of these vendors to your circles or favorites on Etsy, and leave a separate comment here letting me know you did. (And what a nice way to thank them all for participating!)

#5 (and #6, and #7): Share this post on Facebook or Twitter or your blog (or all, but a maximum of THREE entries) and leave a separate comment here for each one letting me know you did.

That's up to SEVEN chances to win great prizes! Thanks everyone for following along in our journey, and thanks to these great vendors helping us celebrate.

The fine print: Entries will be accepted until 11:00 pm Eastern Time on March 4, 2012. The winners will be announced shortly thereafter and will have one week to contact me to claim their prizes. The winners will be selected via random.org. If you don't leave me any way to get in touch with you, I can't email you to tell you that you won! Open to US residents over 18 only, and prizes only ship to the US. I'm not liable for any sort of computer/internet/blogger issues that cause delay or cause commenting problems. And I think you are all awesome. Oh, and sorry Mom, no prizes for my immediate family. That means my brother and husband are also out of luck. So is Ellie, but since she can't type, I'm pretty sure she won't leave a comment. And I'm not responsible for shipping times/production times/stuff like that. I'm not responsible for the delivery of prizes, illness, or random.org. (If random.org doesn't work, I reserve the right to pick names out of a hat or some such alternative.) One prize per winner. If you're a participating vendor, you can't win. Basically, I'm doing this to be nice. If something doesn't work, I'm sorry, but I can't be held responsible. If random.org doesn't work, I'll resort to slips of paper.

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Happy Early Valentine's Day.

2012-02-12T15:41:00.000-05:00

Will you be mine?

Also, can you help me open this candy? Thanks.

Love, Ellie

P.S. Charlotte's parents go to court for their adoption on Tuesday. Will you say a prayer for them, both for court and the finances? Thanks.

Charlotte Update, Ellie Story, and A Great Read.

2012-02-11T07:30:00.000-05:00

Charlotte Update:

&amp;lt;p&amp;gt;&amp;amp;amp;amp;amp;lt;p&amp;amp;amp;amp;amp;gt;&amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;p&amp;amp;amp;amp;amp;amp;amp;amp;amp;gt;vi&amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;/p&amp;amp;amp;amp;amp;amp;amp;amp;amp;gt;&amp;amp;amp;amp;amp;lt;/p&amp;amp;amp;amp;amp;gt;&amp;lt;/p&amp;gt;

(Video from Charlotte's mommy.)

Charlotte is scolding her bear, because she'd just gotten in a little bit of trouble. And she is still super-cute.

As of this morning, Charlotte's adoption fund on Reece's Rainbow was at $27,000 exactly. About $31,500 is the final goal, so the community is continuing to respond beautifully. I love getting Kelly's updates from Charlotte's country as she and Kyle spend time with their baby girl. They go to court on Valentine's Day, and the trip to bring Charlotte home will be about a month after that.

Ellie Story:

As you know if you're a regular reader of this blog, I have an increasingly mobile child these days. I've mentioned that Ellie likes to run away on the changing table. Last night, I was getting Ellie ready to go to dinner with Matt and I. I thought a clean diaper would be appropriate attire. As soon as the old diaper came off, Ellie sat up. I picked Ellie up and returned her her back, ready to get a new diaper on. She scooted away and sat up, laughing. I picked her up again, put her on her back again, tried to get the diaper on again. She escaped, sat up, laughed, and clapped for herself. Repeat. Many, many times.

I eventually won, and she did wear a diaper (and even clothing) to dinner. We ate Thai food, so Ellie was happy.

A Great Read:

My regular readers know that I love Pudge and Biggie. A recent post on inclusion and becoming integral caught my attention to the point I feel compelled to share. As an educator, this is what I strive for. As a parent, this is my hope and prayer for Ellie. Courtney's post is an absolute must-read for general education teachers, special education teachers, and parents. (Not just parents of children with disabilities. All parents.)

Have an absolutely wonderful weekend. There were rumors of snow last night, but looking out my window, I am anticipating a rainy run. Any fun plans for you?

Pure Bliss.

2012-02-10T07:15:00.000-05:00

Teething makes Ellie grumpy.

Teething also makes me grumpy, because Ellie wakes up early and cries a lot.

I am grateful we live a block away from the swings, because they seem to be the only solution to baby teething pain.

("Higher, Mommy, higher!")

("Wheeee!")

(Please note that Ellie freed her thumb from her warm fuzzy blue suit.)

("Mama, my thumb is trapped!")

(She was trying to sign while wearing this outfit, but I had trouble seeing the signs.)

(Massive wipeout in progress.)

Hope your Friday is blissful. Stay tuned over the weekend for a super-cute Charlotte video update.

Baby Game Suggestions From Ellie.

2012-02-09T08:41:00.002-05:00

Hi Friends,

Ellie here. Did you know that it's almost Valentine's Day? And almost my birthday? And sometime around Valentine's Day, I'm giving away a lot of stuff, because even though it's my birthday, my mom said I have to share. Stay tuned for that.

("Valentine's candy!")

Anyway, you probably know that my mom can't operate Gorilla Glue. I tried to warn her, but she just didn't listen. After the mess she made, she decided to go buy a cheap ice cube tray and make me a new toy. I'm pretty hesitant with my new toy, but one of these days, I'll decide to point. My new toy looks like this:

(Ice cube tray with rubber bands, craft sponges, rice, sea salt, rocks, ribbon, cloth, paper clips, and whatever else attached with a glue gun.)

My mom used a hot glue gun, so she had to make it while I was asleep. And see, that's why I shouldn't sleep. I miss important stuff, like hot glue.

Now that toy my mom made is okay, but I have some way better games I'd like to suggest to all my baby readers. One of my new favorite games is my elephant ball popper game. I can make it work all by myself because Mommy and Daddy taught me to push the red ball in the elephant's hand. When you push it, the elephant plays a song! The song is best before six in the morning. I like to sneak up on my ball popper and surprise everyone with pretty music.

("How do you get the candy out of here?")

And I have a coffee table game. I call it, "Hide From Grown-Ups." If your local grown-ups do something crazy like leave you in the living room for 30 seconds while they get another cup of coffee, crawl as fast as you can under the coffee table and hide. Part of this game is tricky - do NOT attempt to sit up under the coffee table. Coffee tables are not tall, and you will hit your head. Then you will not be hiding very well, because you will cry. But the grown-ups will feel sorry for you and rescue you. I play this game whenever Mommy gets coffee, and that's a lot.

"Baby Signing Time" is a great time for my another cool game. The key to this game is to get your Mommy or Daddy to let you watch "Baby Signing Time" on a Mac. Then, crawl to the Mac and hit the long bar at the bottom of the keyboard. The people on the movie will freeze! I tell you, babies, this trick is cool. But make sure a grown-up is nearby, because you have to hit the same button to make the people unfreeze. Sometimes, aiming at that button is tough. I usually just hit all the buttons at the same time, and that makes Mommy move really fast! "Baby Signing Time" is also good for learning "more," and I like "more."

Babies, what are your favorite games right now?

Love, Ellie L.

PS. Did you check out the latest update on my friend Charlotte?

linking up here.

("I give up.")

Why You Matter - Miracles Happen.

2012-02-08T16:44:00.000-05:00

I know I'm posting twice today, but I have fun news to share.

My friend Kelly and her husband Kyle are in Eastern Europe right now, on their second of three trips to bring their sweet Charlotte home.

This is the message I got from Kelly.

"It was one of the best moments of my life. We were sitting in the directors office looking at her pictures from her birthday party...and the door opened. She peeked around the door and saw me sitting here. She screamed "Mama! Mama!" and ran at me, sliding all the way across the floor in her tights. She grinned. I cried."

You matter because you were a part of the miracle - the financial gifts, the praying, the sharing, meeting the practical needs. Thank you. I love participating in, even in a small way, this sweet story. I'm glad that Ellie's friend will be home soon.

I am praying that when Kyle and Kelly return home next week, they'll be fully funded so that they can focus on preparing for Charlotte's homecoming in March. Under 5,000 dollars to go for the whole adoption!

Please, keep sharing! The link to give is here, via Reece's Rainbow.

All photos from Charlotte's Mommy, used with permission.

Creative Parenting Failure... and Minor Redemption.

2012-02-08T06:14:00.000-05:00

What happens when an elementary teacher becomes a stay-at-home mom?

In my head, wonderful, creative parenting ideas, like this one I saved on Pintrest. Early literacy projects that would be fun for Ellie and fun for me. Labeling. Sorting. Naming things. Signing. Encouraging exploration and growth.

At times, I live up to my expectations.

This story is not about one of those times.

Ellie's wonderful developmental therapist had mentioned that a coming skill for Ellie will be finger isolation, or pointing. She suggested gluing objects in an egg carton. Being the awesome, amazing mom/teacher that I am, I made a quiche today to finish off the eggs and free the carton. I took Ellie for a long walk to help her nap. I gathered a number of small items from the craft boxes on my shelf. I grabbed the Gorilla Glue, because it was closer than the hot glue gun and doesn't involve plugging anything in. This was my big mistake. I don't know why I didn't use the Krazy Glue, which was next to the Gorilla Glue.

I started gluing - ribbons, googly eyes, wood chips, and pieces of cloth. I remembered that I had another box in the closet, and I was mindlessly carrying around my fine-motor-skill-egg-carton-creation around the house. I set the awesome creation on the bed and went to the closet, returning with my box.

When I picked up the egg carton, my hand felt tacky, as if it had been covered in glue.

FACT: Gorilla Glue disintegrates Styrofoam egg cartons. Gorilla Glue is also not fun to have stuck to your hands.

(The evidence of failure.)

(This idea was almost awesome.)

I'll be purchasing eggs in cardboard and trying again next week. In the meantime, nail polish remover has helped de-glue my hands, and Ellie's pointing skills may have to wait another week. We'll be sticking with naming objects, sorting and matching, and other early learning activities around here. Oh, and eating quiche.

Okay, so after my defeat, I did come up with something to work on Ellie's fine motor skills a bit. No glue involved, I let Ellie play with a cupcake tin. I placed a single Cheerio in each of the cupcake wells, and let her eat them one at a time. An ice cube tray would work better, but our ice cube tray was full of ice.

(I think it's funny that in this photo, Ellie is pointing, but she's totally missing the Cheerio.)

At least the moon was pretty. I should have used my tripod, but I just ran out to take a quick picture after Ellie fell asleep.

For the rest of the week, I'll be working to redeem my parenting failure. I'll let you know if I come up with anything great. I may go purchase a cheap ice cube tray for a fun textile grabbing/pointing/learning game for Ellie, but there will not be Gorilla Glue involved.

Finally, and without any sort of great transition -This week is Congenital Heart Defect Awareness Week. Ellie, we are glad you have a happy heart these days.

A Village.

2012-02-07T13:25:00.000-05:00

Forgive me if I get a little gushy for the next few weeks. Ellie is nearly one year old, and just before her first birthday, we'll celebrate the six month anniversary of her heart surgery. I think that's reason enough to be a bit emotional, but many people have accompanied us in this journey with Down syndrome, and all of them deserve a huge "Thank You!"

Next week, we're saying "thanks" with a big giveaway. This week, I'm simply sharing some ways in which others have come alongside us to be part of the "village" raising our child.

Our families have loved Ellie and spoiled her rotten. (Seriously. The only toys we've purchased for her were Christmas gifts from us. Yet our living room, our basement, and Ellie's room resemble Toys R Us.) Various family members have donated to the Buddy Walk, done the virtual Buddy Walk, given Christmas money to our local Down syndrome organization, and given to Charlotte's homecoming. Those actions speak loudly, and show that you value our little girl.

We have friends who have provided meals, listening ears, support, and advice on raising a child. Thank you to the friends who keep me grounded and help me ~~not to stress~~ to stress less about milestones. Thank you to every friend who has cheered for Ellie's accomplishments. Thank you to everyone who has listened and learned about special education, inclusion, and therapy.

When we learned about Ellie's diagnosis, we worried that our world would become smaller. Instead, we've met more people, and Ellie makes new friends wherever we go. Now that she can wave back at people, they are instantly charmed.

From the cards at Ellie's baby shower to the kind comments when you see Ellie, I've treasured your positive comments more than you know. I've also treasured the way your kids treat our daughter, because they see her just like any other baby.

You are all awesome, and you deserve to know it.

Gush over. For now.

Monday Updates: Mobility, Ellie, Charlotte, and Cakepops.

2012-02-06T17:35:00.000-05:00

The more more mobile Ellie becomes, the less she responds to her name. Recent shenanigans have included Ellie removing a container of Puffs from the diaper bag and and attempting to chew through the plastic to get to her precious Puffs. She also got her hands on a copy of "Teaching the Infant with Down Syndrome" from the bookshelf. And pulled the remote off the coffee table. While Ellie is now constantly on the lookout for new ways to cause trouble, I'm proud of her mobility and desire to explore her world.

(Into the Puffs. Next to Ellie is the diaper bag. This was prior to my first cup of coffee, and prior to 6 am.)

Ellie provided assistance making cakepops for Superbowl Sunday. She throughly enjoyed exploring a piece of cake I tossed toward the sink. She's getting fast, and when I missed, she scooted her butt right over to that cake and took a big, happy bite. Since we had a great time making the cake pops, I decided to document the process. Clearly, I am not a food blogger. I missed about eight steps. Based on my limited and unimpressive photos, here's my tips on "how to make cake pops."

1. Find a bowl of mashed up cake and frosting.
2. Allow baby to play with wooden spoon.
3. Make cake balls out of cake/frosting mixture.
4. Watch as said balls of cake magically coat themselves with candy and decorate themselves. Do not display on cupcake liners. Just leave them on wax paper.

Or, you could follow the steps I learned on Pintrest. I promise, I did remove the pretty "cake truffles" from the wax paper, and I even found sports-themed cupcake liners. The dig for the cupcake liners inspired me to clean out my cabinets today.

Yep, I had time to clean, because Ellie took a nap. I hate days she gets shots. She is grumpy. Her legs hurt. She's angry. But wow, Ellie sleeps. In attempt to make her feel better, we visited her favorite swing set today after her lengthy snooze.

("Mama, I like the swing, but I did not like our morning activity with the shots.")

(Really really long eyelashes.)

A continued note of thanks is also in order. Kelly and Kyle have less than $5000 to go to have Charlotte's adoption funded. I am blessed beyond belief by the community that has rallied around them as they build their family.

On that topic, you may notice some changes with the link to Ellie's birthday wish. The previous method of giving, via "ChipIn," closes tonight. (If you gave via the ChipIn, you could win a prize! I'll post a link to the winners once they are announced.) Since I know some people still want to give after that method of giving closes, I am updating the link. Reece's Rainbow is the organization Kelly and Kyle are working with. Charlotte is listed as Maria, but the funds all go to the same place and she's the same child. And you all have played a key role in helping her come home!

Happy Monday!

Linking up here. And here.

Eleven Months.

2012-02-04T07:04:00.000-05:00

Dear Ellie,

Today, you are eleven months old. You started your day at 4:45 am, after a 2:30 am fakeout. I'm happy to report that Daddy was on morning-duty today. Daddy took you downstairs and gave you a bottle, read you Bible stories, played with your busy box, and listened to you yell in pain (teeth), delight (life) and fun (waking Daddy up early). Now Daddy needs a nap, and you are attempting to climb your giant stuffed elephant.

Your ability to crawl and scoot along has exploded over the past few weeks, although you manage to get stuck frequently. You are a Houdini in shopping carts, but you are hopeless under the coffee table, crib, bed, and any other elevated piece of furniture. Pulling to a stand on the bottom stair is your favorite trick, but you need to grow a bit before you can pull up on anything taller.

Ellie, you are a master of forward propulsion and perpetual motion, but we're hoping personal flight is a long way off. You never stop moving, even in your sleep. We're waiting for a healthy fear of falling to develop. Your ability to crawl has led to a new game: "Chase the Naked Baby Around the Changing Table." Daddy says that getting you ready for the pool is a team event. Since I quit that team, Daddy is having a rough go.

You are a human garbage disposal. Your favorite foods include curry, chili, enchiladas, mashed potatoes, sweet potatoes, hummus, and anything that is not apple based. What kind of baby eats chicken curry with rice and naan, but refuses a squeezie applesauce pouch? You also mix all of the foods on your plate together, stuffing handfuls of chicken, Cheerios, and hummus into your mouth in a flavorful and disgusting combination.

(A little pout.)

Baby girl, you are already making a difference. Your birthday wish continues to raise funds to help your friend Charlotte come home. You bring smiles to the faces of passers-by when you give your sweet little wave. You charm the neighbors, you flirt with men of all ages. And you've got your parents wrapped totally and completely around your finger.

("Flirt? Me? Never.")

PS. Ellie's giant birthday giveaway kicks off in a week! Ellie's birthday wish is going on until Kyle and Kelly are fully funded to bring Charlotte home. And the birthday party planning? Well, that's in full swing.

She Crawls!

2012-02-02T19:09:00.000-05:00

Ellie is turning eleven months old on Superbowl Sunday. I do not expect her to walk by twelve months. Even if she didn't have Down syndrome with it's accompanying low muscle tone, her surgeries would make walking at twelve months a huge feat.

But girlfriend is officially crawling. Slowly. Haltingly. And only for short distances when she's in the mood, and no amount of parental prompting can change Ellie's mood. Ellie has also been practicing yoga, and doing a lot of "downward dog."

Ms. Megan, this one is for you. Thanks for being an awesome physical therapist.

I am really bad at remembering to do instagram updates on Fridays, so here's a "not exactly weekly" update.

(I'm "meganlando" on instagram, should you care to follow along.)

Are you ready for the weekend? We have double fun with two parties, time with friends, and I'll be setting my running goals for the season. Ellie is seriously considering donning her Bears cheerleader outfit for a Superbowl party. She knows the Bears aren't playing, but they are her favorite team.

PS. Ellie has her first tooth. I was waiting to share that little fact until we had photos, but photographing that tooth is near impossible. Just trust me, the tooth is present.

Thank You.

2012-02-01T21:23:00.001-05:00

Tonight, Ellie and I were sitting across from Kelly at dinner when she got an email.

The email said she and Kyle have the funds to travel to court for trip two of three. We cried happy tears.

What does that mean?

Any money that comes in now funds trip #3. Trip #3 is the biggest, the best, and the most exciting.

Trip #3 means Charlotte will be home.

EDITED FEBRUARY 6: The link below closes tonight. You can still give by clicking here.

Thank you, thank you, thank you!

NOTE: Charlotte is listed as "Maria" when you click to give. Don't worry, same sweet girl!

Two Great Loves: Running and Down Syndrome.

2012-01-30T16:56:00.000-05:00

Fact: If you are one of those people who has said, "I could never run a marathon," you need to read this post.

When I was pregnant with Ellie, I was directed to Missy's list of Things To Do Instead of Worry. One of those things was "Google your favorite hobby + Down syndrome."

"Down+syndrome+marathon" led me here. I was overjoyed to learn about a man with Down syndrome running 26.2 miles, but what about the women? I said that I wanted an example for my daughter, but I know I really wanted an example for me. I wanted to know that my baby, even with her extra chromosome and her repaired heart, could participate in my favorite sport someday. (If she wants to. But of course Ellie wants to be a runner, right?)

(I think it's obvious that Ellie wants to run.)

When Blair Williamson posted something about a woman with Down syndrome training for a marathon on his Facebook page, I jumped for joy, then got in touch with him. I learned that two women with Down syndrome are currently training for the LA Marathon on March 18.

Meet Antoinette Mendoza, 43. Meet Angela Armenta, 25. I named them "Team Awesome."

(Photos via Crowdrise, with permission.)

These women already finished the Rose Bowl Half Marathon. Check out the video here.

On Saturday night, I was honored to speak with Antoinette and Angela, and their coach, Jennifer, along with some of Angela's wonderfully supportive family members. I was grinning the entire time, because the conversation was such a great example of "more alike than different." They are running as a fundraiser, like many other first-time marathoners.

Angela and Antoinette are learning about nutrition, running intervals, and talked about feeling proud, tired, and receiving their beautiful medals. We laughed about listening to the coach, walk breaks, and tired feet. Angela and Antoinette train with the ARC, an organization that serves people with developmental disabilities. The ARC's marathon training program began when one of the adults with disabilities expressed an interest in running. The rest is history in the making.

Angela came into the marathon training thanks to a conversation between her brother and Jennifer. Jennifer shared that no woman with Down syndrome had run a marathon. Angela's brother talked to her, and she'll toe the line on March 18. Angela's mom shared with me that she initially was concerned for Angela, who was born with a hole in her heart that closed when she was five. The cardiologist cleared her for the marathon.

Antoinette has two friends from the ARC who have run five marathons between them. She wanted to join the fun. She ran her half marathon in 3:18. Just for fun, I threw that time into an age-grade calculator. Thirty-five percent, not too shabby for "low tone" and "decreased metabolism," two oft-cited traits of people with Down syndrome.

According to Jennifer, who is training the ARC group, these women are training hard, achieving dreams, and bringing hope to the community. They've provided support at other races, passing out water and Gatorade, and by doing such, are becoming a real part of the running community. Additionally, exercise is important for cognition in adults with Down syndrome (and in all adults!) and I can't think of any better exercise. Note: I may be biased.

Ellie certainly is inspired and ready to run. Angela and Antoinette, thank you for setting an example for my daughter and for runners everywhere.

("Angela and Antoinette, let's race!")

SoCal runners - if you want to join Team ARC in the LA Marathon, or if you have any extra watches, running store gift cards, sweet shoes, etc. laying around you'd like to give to Angela and Antoinette, shoot Jennifer an email.

P.S. Have you checked out Ellie's birthday wish yet?

My Favorite People.

2012-01-29T16:45:00.000-05:00

Matt and Ellie can be so silly together. I love them.

Last week, laying around reading with Daddy, Ellie decided to grab his nose. She caught it.

And while you're here... Did you check out Ellie's birthday wish yet? I can't wait until her friend Charlotte comes home and Ellie and Charlotte can be goofy together.

Ellie's First Birthday Wish.

2012-01-27T07:09:00.004-05:00

I know that starting the birthday celebration before Ellie hits the eleven month mark is jumping the gun, but that's okay with me.

Ellie has a friend named Charlotte. Charlotte lives in an orphanage in Eastern Europe. Her mommy and daddy are in the process of bringing her home, but it's not cheap or simple. Kyle and Kelly need to fly overseas to see her three times, and will bring her home on the final trip. They've done the first trip. The second and third are coming soon.

(Charlotte with Mommy and Daddy.)

Ellie is getting a new friend around her birthday, but there's a cost. Plane tickets. Agency fees. Homestudy costs. Visas. Room and board while visiting Charlotte. The list goes on.

Charlotte's birth parents placed her in an orphanage because she has Down syndrome. Children with Down syndrome in Charlotte's region are sent to mental institutions around the age of four if they aren't adopted. Children like Ellie. Children like Charlotte.

(Charlotte.)

I've mentioned fundraisers here before. In the past, I've pointed to them as a matter of interest, or prayer, or as an aside. This isn't an aside.

For her birthday, Ellie is getting some nice gifts. She's having a nice party and Charlotte's parents are invited. Ellie wishes her friend was home to celebrate, and she is asking for your help.

What if you helped bring Charlotte home as a birthday gift to Ellie?

(Meeting Mommy.)

What can you do? You can share this story. Post on Facebook. Tweet. Share on Google+. Email it. You can help by giving, because every little bit counts. The link below takes you directly to donate to Charlotte's adoption costs. (EDITED FEB. 6: The link closes tonight. You can still click here to give, or check out Kelly's blog to learn more.)

And you can pray. Please pray for Charlotte's family!

.

Kyle and Kelly found Charlotte through Reece's Rainbow. The mission of Reece's Rainbow is to rescue orphans with Down syndrome through the gift of adoption, to raise awareness for all of the children who are waiting in 25 countries around the world, and to raise funds as adoption grants that help adoptive families afford the high cost of adopting these beautiful children. As they go through their own adoption process, they've been sharing the stories of other waiting children and about other families in need of funds.

For her birthday, Ellie wants her friend Charlotte to come home.

A few people have asked why the link takes you to "Maria." Don't worry, same kid. Her name will be Charlotte once she is home.

TO SEND A CHECK: Please write "Dirkes Family" in the memo line.

Reece's Rainbow
PO Box 4024
Gaithersburg, MD 20885

If you have any questions regarding donations, please email Michelle@reecesrainbow.org.

All photos of Charlotte in this post are courtesy of Charlotte's mommy.

Asleep at the Table.

2012-01-25T10:46:00.000-05:00

We have a 10 month old baby who goes to bed around 8:15.

Last night the clock struck 8:15 and Ellie turned into a ~~pumpkin~~ bobblehead.

This is what we saw:

Don't worry, after this, Matt picked her up and let her sleep in his arms.

Snow, Ice, Sun.

2012-01-24T17:38:00.001-05:00

Over the past few days, we've had a bit of snow, some ice delays. and 50 degree sunshine.

(Saturday morning snow and ice.)

Saturday night we attended a murder mystery party. Should you ever need help solving a crime, I suggest calling someone other than me. I didn't come anywhere close to identifying the "murderer." Despite my lacking sleuth skills, a night with the grown-ups was nice.

The crazy weather meant we spent Sunday afternoon at the Building Museum, which is now one of my favorite DC attractions. The museum has a Lego exhibit. I was impressed, especially with Falling Water in Legos. At the end of the exhibit was an area full of Legos where you could literally sit for hours and design and build a house. Ellie isn't quite at the "play with small objects rather than eat them" stage yet, so we didn't build anything.

Favorite fact I learned: There are an average of 62 Lego pieces for each person in the world. The museum also had giant blocks in a huge open area, which was full of happy babies and toddlers, including Ellie.

(Look! I'm in the picture! Thanks, Matt.)

Monday, everything opened late because of ice delays. Today, we went to the park after physical therapy.

(Ice out our window Monday.)

Since Ellie rocked physical therapy today, I suppose I should give a quick gross motor update. She can pull to a stand on the stairs, but only on the stairs. I think everything else is just a bit too high for her. Ellie's crawling is primarily backward, but improving. Today, our PT greeted us, then went into the kitchen to wash her hands. In the brief time she was out of the room, Ellie managed to end up sitting under the coffee table.

(Sleepy swinging today.)

And finally, yesterday I posted about wisdom from the Down syndrome community. Ellie and I spent some time with Kelly last night, whose daughter Charlotte should be coming home soon!

Crowdsourcing for Wisdom.

2012-01-23T12:18:00.003-05:00

As we start planning for Ellie's first birthday in a bit over a month, I'm reflecting a lot on this time last year. The anticipation, the waiting, the "already" of her Down syndrome diagnosis and the "not yet" of knowing Ellie made for a stressful start to 2011.

(Ellie hanging out with Olivia.)

Recently, I asked some other moms of children with Down syndrome what they learned in the first year, and what they're glad they did for themselves or their child. There are some smart mamas on the online forums. Most of these women have been walking this road longer than I. Many have answered specific questions for me about everything from heart surgery to keeping Ellie's feet in her shoes. Like any other time I've sought advice from a large group, some advice is conflicting, but I know that every person quoted below is seeking the best way to raise their particular child.

These women directed me to blogs when I was pregnant, and showed me that life would continue, and that life would be good. Those women I've met in person have become friends. Here are some bits of wisdom they shared.

(Courtesy Jaidin's Journey.)

"I've learned how 'normal' it is to raise a child with Down syndrome." - Jaime

"She truly is more like my sons (without Down syndrome) than she is different." - Michelle

"A parent's love for their child knows no boundaries, does not discriminate." - Cindy

"I learned, from Calvin during his first year of life, that the unexpected is that much sweeter and more exciting. I learned, with that, to give up expectations and control and let others decide things, too!" - Ilisa

"Joanna has taught me more then I will ever be able to teach her." - Jessica

(Photo courtesy Pudge and Biggs.)

"During this first year of Liam's life (or at least his first 8 months) I've learned to take things one day at a time." - Lauren

"I would have to say I'm glad I gave my daughter a lot of sensory input right from the start, ie: music, reading, activity etc. I think that's been the most helpful." - Laura

"I decided that the best thing I could remember is that we were raising a whole person - not just someone who could button things, or who could reach gross motor skills on a timetable, or who could speak clearly. Sure she needs those things, but she needs discipline, empathy, confidence, the ability to read people and make good decisions and to say 'no'." - Melissa

"I'm glad we made Amélie a big sister. Seeing her in the role of big sister makes me love her even more than I imagined. She is so kind and caring to her little brother. She can also be a noodge with him too, but let's face it, younger siblings can be annoying at times. (Spoken like the oldest in my family)." - Kathleen

"The best thing I did was attend the DownsEd conference when Olivia was only 8 months old. I got a LOT of great ideas from it. The best thing I wish I had done....hug and hold her more. The baby baby stage still goes by quick. I was so worried she wouldn't be independent that I didn't hold her as much as I could have. My husband says I held her a LOT, but I honestly, don't feel like I did." - Chris

"I am glad that we went to the conferences and symposiums that were in our area, because I learned a lot, and it was a huge encouragement to meet other parents." - Tricia

"I am glad that I treated her as I would have treated her if she did not have Down syndrome. I exposed her to as much as possible and made sure that we participated in as many activities as possible that typical infants and toddlers would do. I never believed that she could not do something because she has DS." - Jennifer

(Photo courtesy The Bates Motel.)

"I'm forever grateful for Dale's first teacher, Stacey who came to our home every two week to "teach" him as an infant. She was spectacular and I am still in contact with her today, though she hasn't seen him in almost 5 years." - Tammy

"I'm glad I reached out to the Down syndrome community, online and locally. Without my fellow moms and dads I really don't know where I would be today. Because of my fellow 'club' members' support, patience, and knowledge I am a happier, more well-adjusted parent to Matti. I thank you all! " - June

"My main advice his let them be themselves, savor the milestones and smoother them with love." - Michelle

"I'm forever grateful that I took the time to meet other parents in my local area who had kids with Down syndrome and without DS." - Shema

"I am glad I allowed myself to enjoy him as a baby and to develop on his own time. Although we were busy with doctor appointments, therapy etc. I made it a point not to get caught up in milestones and what other babies were doing. It helped to lower Mommy stress." - Sherry

(Photo courtesy Yo Momma Momma.)

"I'm glad my friends, co-workers and family enveloped me in a blanket of support. I needed it." - Johanna

"I'm glad I took the time to enjoy my son's infancy, and really savor every smile, new experience, and accomplishment. I also learned to forget the charts, and let him show me what he could do when he was ready. It took a lot of pressure off. Lastly, I learned it's okay to put therapies and appointments aside if we needed a break, or wanted to do something fun instead. We're better off for it!" - Kerry

"Honestly, I think the most helpful 'tool' I've used during parenting both Pudge and Biggs is my commitment to respond...whenever possible...with as much humor and grace as I can muster when I'm interacting with others less familiar with what the diagnosis of Down syndrome entails. I will always be an advocate and fierce defender of my children when an occasion demands it, but there is often a fine line between educating others when it's needed and being on the offensive, looking for a battle. I sincerely believe that my children are easy to love and that people are eager to do that...however clumsily they might attempt it. I am QUITE sure that my children will have socially inappropriate mishaps in their futures and I hope others will respond to those incidences with grace and tolerance. I'm making deposits in that bank now, on Pudge and Biggie's behalf, I suppose. So, I guess my motto has been, 'Trust that good is going to happen, and step around stupid when it shows up instead.' It's served us pretty well so far." - Courtney

(Ellie appreciates all the early literacy advice!)

"I'm still in that first year since our diagnosis at 20 weeks, and can't name just one thing. The most important, I think, was learning how to get into the now of things and enjoy my daughter." - Lisa

"I'm really glad we did the Buddy Walk and met so many people. I'm glad to have (an online) group of women for support and I try to use it as often as possible. I'm glad I did a blog just to look back at all the time that has passed and how much she has grown." - Denise

"We came out of the box running, and our transition was pretty easy, so there really wasn't one particular "thing" that really helped us, it was a lot of different things. Initially, having such a positive response from the hospital and all of our doctors/nurses/etc., and getting a folder of information and resource materials from a social worker that came to visit us in the hospital was the very, very best thing these new parents, with absolutely no clue about Down syndrome, could have gotten. Several myths and stereotypes were blasted away from the get-go with that. Further into Samantha's first year, I'd say that personally, having a positive attitude all the time and being completely smitten with our new baby was the biggest thing that helped us" - Becca

(Photo courtesy A Perfect Lily.)

"I often wonder - what was I so worried about - life is so good." - Kari

"The first day we were home from the hospital after Lily was born (which was actually a week later due to a long stay in the NICU) I got online and started googling Down syndrome. I looked for real life stories of families who were raising kids with Ds- I didn't want a host of medical facts or things to be on the lookout for. What I wanted were real people with real stories to give me hope. I didn't find one. I found over THREE HUNDRED. Ds bloggers, as well as experienced moms from the Down syndrome boards on Babycenter.com were my lifeline. They gave me a window into a future filled with joy and reward and yes, challenges, but above all hope. I am forever grateful for my network of online friends who showed me that Lily had a beautiful future ahead." - Patti

"(My advice is) to connect with people who have been through this, whether it's through (an online group) and/or through a local group. It's nice to be around other families and see they are normal just like you and they are doing it so you can too. It's nice to talk with people who understand, because most people in your life won't truly understand even if they are wonderful and try very hard." - Alysia

(Photo courtesy Pudge and Biggs.)

"I am glad we bought Baby Signing Times. I think it was the best investment we made. It gave Emily a way to communicate with us. I don't know where we would be today without Signing Times. Emily is 32 months and we now have almost every video Rachel Coleman has made." - Tracey

"Best thing I did for Kelly, hands down, was birth him AT HOME! I had him checked, rechecked, triple, quadruple, etc, checked to make sure he was healthy and then we planned his beautiful homebirth. I made plans for emergencies (like not breathing properly or pinking up or keeping his temperature up) which weren't needed and was completely prepared. And when the time came, he came into this world at home, was put straight to the breast, and celebrated like his siblings before him. Absolutely the best start for his journey." - Heather

"I'm glad I took time off therapy and doctors appointments that first year. The first year was daunting, therapy, doctors appointments, running around to different places all the time or always having a therapist in the house. So throughout the first year when I felt overwhelmed I would go for a week or two without either. It was therapeutic for me and for Seth. A break is always needed. Being not only a new mom, but a new mom of a child with Down syndrome, I felt like I was supposed to always be busy doing the therapy and making sure he was 100% healthy - wow how stressful - the weeks off made both Seth and I much happier and healthier. So my message is - take a break from it all!" - Shanna

(Photo courtesy Pudge and Biggs.)

Thanks for sharing, everyone. I received far more responses than I could reasonably fit in one post. I am so very grateful for the bonds in our little community, and I look forward to celebrating for years to come through first dates, graduations, and watching our children come into their own. And an extra thanks to those who allowed me to use photos of their little ones, and for providing those photos on short notice!

In our family, we're glad we exposed Ellie to as much as we could. We followed her cues about her capabilities.

I'm glad I reached out to the online community and local Down syndrome community, and learned we aren't alone.

I'm glad we made a decision to choose joy. I'm glad I started this blog to look back and to connect with others. I learned that my life isn't so different from that of any other first time mom.

I learned that our best friends will love and support us in the times our lives are different - the hospital stays, the medical worries, the concerns over milestones.

We know Ellie will continue to bless us, to teach us, to drive us crazy, and to make us laugh. I know that the parents who are walking this road ahead of us will be a valuable source of information for years to come.

Click on Down Syndrome Pregnancy for online resources and community. Click on Real Life Down Syndrome for a great collection of stories.

What are you glad you did in your first year of parenting, regardless of how many chromosomes your child sports? What do you wish you did?

PS. Yes, I made a Wordle. Because I'm ~~nerdy~~ awesome like that.

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We Love Books.

2012-01-22T14:00:00.000-05:00

I love books. I love to reread old favorites, I love to find great children's books for Ellie, and I love to curl up with my coffee and a new book.

Hunger Games is the next series on my list.

My hope for Ellie is that she will also love books, love to read, and love to learn.

("Oh, Daddy, what will Olivia do next!?")

She's on her way! Check out I Heart Faces for "By the Book" this week.

Shopping is Overwhelming.

2012-01-20T15:14:00.001-05:00

Today's list at Target:
* Rice
* Garbanzo Beans
* Printer Ink
* Baby Boy Clothes (Gift)
* 3-ring Binder
* Hole Punch

Not too exciting, but apparently, overwhelming for some people.

(Yes, Ellie had a pretty awesome mark on her face when she woke up.)

Have a great weekend!

Stolen Book Brilliance.

2012-01-19T15:52:00.006-05:00

This little one's incoming teeth are wearing me out, and yet I look at this picture and melt.

This photo, too.

Okay, onto the books.

As you know if you're a regular reader of this blog, Ellie just started working on the "See and Learn" language program from DownsEd. I love it. To supplement, however, I wanted to make sure Ellie had a few photo books of extra-meaningful items, such as herself, her parents, and of course, her toys. I know that number sense tends to be more difficult for children with Down syndrome than reading, so I figured a book of numbers wouldn't hurt, and the number concept provided inspiration for my text.

The story is pretty exciting. "I see one doll. Ellie has one doll." "I see two bears. Ellie has two bears." And so on... But she adores her books, and even army crawled for one today, putting the book on par with Cheerios.

While I'd love to take credit for this brilliant idea, it came from Pudge and Biggs. If you have small children, regardless of the number of chromosomes, you'll find something helpful for early education and fun. And the books you'll see if you click over to this post are way better than the books I made.

(Note that I used a photo of Ellie whacking a baby in the head for "Ellie can make friends." I may need to edit this book.)

In other Ellie news, she's starting to sign. She only signs "more" consistently. I'm so proud. And frustrated, because I often have no clue what Ellie wants more of. We are also teaching her "eat," "milk," "ball," "book," and a bunch of other signs, but "more" is the only one she's mastered. It's pretty cute. She loves Baby Signing Times and manages to scoot up right next to the computer to watch.

I tried to run today, but despite her amazing toughness, Ellie does NOT like the wind. And fuzzy footy pajamas, plus a hoodie, plus a blanket, plus a hat, plus gloves were simply not enough, so after 24 minutes, we were back home. Instead of finishing my workout, I found the Cadbury Creme Egg I bought the other day. I have no idea why they're already out at the grocery store. I am powerless against them. I needed the boost today, too, because at 2:30 am, Ellie started to fuss. I went into her room at 3:00. She finally napped at 3:10 pm. (I would be taking a nap, too, but she fell asleep in the middle of our bed. There's no way I'm going to risk waking her, and somehow the under sixteen pound baby is taking up the entire bed.)

A bottom tooth is somewhat visible, with a tiny little tip poking out. Tylenol helps somewhat, but it's not nearly strong enough for a baby with two surgeries under her belt already. Provided Ellie is fully distracted by crawling, eating, reading, or Baby Signing Time, she's okay, but as soon as her activity ends, her lower lip sticks out the tears flow.

Reading has been her distraction of choice.

(We love Olivia.)

("Mommy, Olivia is so funny!")

(The letter "M.")

PS. Kelle Hampton is running a huge fundraiser right now. You can check it out here. There's a little girl in pink around 1:50-something in the video signing "more."

Joining up at And Then She Snapped.

Tuesday Loves.

2012-01-17T12:14:00.004-05:00

I'm starting this "Tuesday Loves" post on Monday evening, but there's enough I'm loving for two days.

We tried to go to a few different museums today, but being a federal holiday, there was no parking to be had in DC within a reasonable distance. We gave up and went to lunch instead, and were headed to TGI Fridays when I got a text that one of our friends was in the neighborhood. She joined us to chat, and to laugh at Ellie, who put on a pretty good show.

The munchkin has a new favorite food: sweet potato fries. She's obsessed. She ate most of mine, then polished off a pouch of "pears-beets-rutabagas-broccoli-bananas-spinach" or something like that. (Who creates those combinations of food? And why do babies love them?) Then, she went for the cheesecake, but only got the strawberry we gave her as a consolation prize.

("I got a sock!")

(Checking out her toy.)

(Ellie isn't into the bib.)

As I write, I have my husband on the other end of the couch playing Words with Friends and our pigtailed daughter cuddled next to him, rubbing her eyes and sucking her thumb. I'm being lazy, switching between watermarking photos, updating my Facebook status, and writing this blog. And I feel peace.

I mention the feeling of peace because occasionally, it surprises me. A year ago, we thought Ellie could be arriving at any time. So much was unknown. And now, she's pulling to a sit, two surgeries done, and eating like a teenaged boy.

(I keep forgetting to post this on Fridays. Idea stolen from Kelle. I'm pretty sure she's cool with it, because she's nice. I'm "meganlando" on Instagram should you want to follow along in "real time.")

***

Onto our Tuesday.

We have the best early intervention. I love it. Their lending library rocks, and today, along with Ellie playing with her own toys, she got to play with a parachute. Yep, think back to elementary school PE!

(This is awesome.)

Oh, and I know I mentioned it already, but I love watching Ellie pull to a sit. As I write this, she went from lounging with a bottle to tummy to sit, and I had to take a quick "time out" from blogging to play with her word cards from See and Learn. She was learning toward them, and if she loves early literacy that much, this mama is happy to oblige.

Here's an early morning clip of Ellie working on her cards. This is actually the least focused I've ever seen her, probably because Daddy had the camera out! Physical therapy starts in a few minutes, and then, we have a few errands to run. Happy Tuesday!

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A Mini-Update and Family Fun.

2012-01-16T01:08:00.001-05:00

Hard to believe, but I didn't really get my camera out in the past few days. Ellie's been keeping us on our toes with her backward crawl. I have yet to get that on video (I got the army crawl the other day) but it's hilarious. She gets up on all fours and looks like she's about to take off. She looks good. She looks strong. And she moves backward, 90 percent of the time landing herself under the coffee table.

The girl can move. Once she figures out forward, nothing will be safe. I can't wait. Outlet covers are on, cords are moving up, and we're recognizing that the little one is about to gain some serious independence. I'm a proud mama. She's been eating like a champ from all the hard work, too. Cheerios (straight off the floor) for motivation, but also tacos, eggs, chili, you name it. Ellie ate salsa in her eggs this morning. We gave her just a touch of hot salsa last night, and she didn't seem fazed.

Given the fact that we've been having some family fun, you'd think my I Heart Faces entry this week would feature Ellie, Matt and I. Nope. I don't have many photos of the three of us, and many of those I have are taken with a tripod and a grumpy baby. Those photos are not cute. Instead, I'm sharing this photo.

Yep, it's another Christmas shot. Ellie opening an abundance of gifts with her grandparents in the early morning light in the days following Christmas.

Head over to I Heart Faces for more family fun this week.

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Will Work for Cheerios.

2012-01-12T18:05:00.005-05:00

I won't call it an army crawl. I am generous to call it inchworming.

Ellie moved forward today. Just a three or so inches, and seemingly by the sheer force of will rather than mechanics. Why did she do it? Because I'm the kind of mom who lets my kid eat Cheerios off the ground if it helps motivate forward motion.

Now I have a dilemma. I am not a big believer in using food as motivation for kids, but seriously, the iPhone, laptop, remote, various toys, and my own awesome presence haven't worked. If the Cheerios get her going, she can have as many as she wants. We're still far away from any sort of true "mobile" forward motion, but this positive step occurred, and I promised myself that I'd celebrate milestones big and small.

Rock on with your cereal, little one! And then, take your post-workout nap.

("Must get to Cheerios. Must get to Cheerios!")

("That was exhausting, and I only got one!")

In other developmental news, Ellie and I just started the "See and Learn" program from Down Syndrome Education USA. After looking at a lot of early learning programs, I decided that this particular program was a good fit for my teaching style and Ellie's learning style. While I still lean toward a more organic approach to teaching early literacy skills for most kids, I keep hearing that kids with Down syndrome benefit from repetition, and I knew I'd need a program to give me a bit of structure. The See and Learn program focuses on visual learners, and starts with looking at pictures, matching, selecting a named picture, and identifying pictures. Ellie and I did the first few sessions already. She smiles and claps the whole time. Either that, or signs "more." We have absolutely no clue which is which, but hey, she loves playing with her word cards. The goal isn't just reading, but overall language skills. To say I'm excited is an understatement, which is probably why Ellie is excited. My vision is to keep this activity fun and interesting for both of us. I'll work on posting "reading" updates, and I'll let you all know what I think as we progress.

(Happy baby.)

(Teaching your child how to clap and how to sign "more" at the same time results in a lot of this action. No clue which it means. More photos? Yay Mommy?)

PS. I somehow failed to post these images of physical therapy this week. Ellie's first impression of Rody, the buckin' bronco, followed by her final decision that Rody was acceptable. Don't worry, she got lots of hugs, and her extreme terror was remedied by putting Rody lower to the ground. But man, that angry face is cute.

("I hate Rody! I mean, Rody, you're okay.")

Linked here.
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Snow Run, Straw Master, and Epic Stair Fail.

2012-01-10T14:50:00.001-05:00

Remember how on Saturday, I wrote about our beautiful spring-like weather, and posted photos of Ellie on the swings in short sleeves?

The weather has been keeping us on our toes. Sunday after church, we headed out for a little family hike to test out the baby hiking backpack. Ellie is finally big enough. She thought it was the perfect spot for a nap.

("Why did you people wake me up for this?")

(Sunshine. No snow.)

On Monday, I decided that a run was in order. I've been slacking, and I need to get a good base in now to prepare for some shorter and possibly even faster races this spring. As I left the house with Ellie in the BOB, a few flakes were falling. Since the forecast called for a 30 percent chance of showers over the next hour, I wasn't too concerned.

My run ended 35 minutes later uphill, in the snow, pushing a stroller. I felt so hardcore. Ellie loved the flakes. They fell all afternoon, and we had enough of a dusting to make the trees look pretty. I prefer 75 degree snow-free winters, but Ellie laughed at the snow on her eyelashes. Ellie and I stood on the front porch for awhile and chatted with the neighbors, as she stared wide-eyed at the fluffy white stuff falling from the sky. I guess a snowy day won't be an excuse not to run with her if the roads are safe; she could have stayed out longer. (And today, it's 50 degrees.)

(Post-run.)

(An hour or two later.)

(And more snow.)

In other news, Ellie's been really into her straw cup lately.

She's also been working hard on acquiring new skills. Still no army crawling, but an interesting backward scoot while attempting to go forward is progress. Or not? (On the plus side, she's moving. On the minus side, she's ending up farther away from whatever she's trying to grab.) Yesterday, Ellie was sitting next to the stairs playing with a toy. When I looked over, she was attempting to climb the stairs! I grabbed my phone but missed attempt #1.

(So close.... yet so far.)

Just in case you can't tell from the photo, attempt #1 was not successful.

I let Ellie sit back down in the same spot, put myself close enough to catch her in case she was successful in her stair climbing, and watched the little one in action. On attempt #2, she was sleepy. On attempt #3, I put her on her knees, and watched her try with all of her might to get her fishy-shaped maraca.

The fishy was unattainable.

Despite the miss, Ellie really was using her upper body so I emailed the video to her physical therapist. And texted her. I love that our early intervention team celebrates the little victories and big victories with us. I love that they make Ellie work hard, but they know exactly when to back off.

I've got a little one slowing waking up from her running-time nap in the stroller. Happy Tuesday. What's exciting in your life this week?

Linked up here.

My Favorite Photo from 2011.

2012-01-09T03:27:00.002-05:00

My favorite photo this year. What a year we had... I love Ellie's chubby cheeks in this photo. She looks filled out, grown up, and healthy.

Looking forward to many more Ellie photo ops in 2012!

Spring Days.

2012-01-07T21:44:00.001-05:00

Today is January 7. Yesterday was the twelfth day of Christmas. No one told the weather, and we continued to soak up the sun. My quick 20 minute run turned into 4.5 miles of hills with a stroller, wearing a sleeveless running shirt. And of course, Ellie hit the swings. Twice.

("Wheeeee!")

("Higher, Daddy!")

Along with the swings, Ellie had her first sliding experience today. After some initial hesitation, she went full force the second time, basically sliding solo, with Daddy's arms close enough to catch her. She's a brave one.

("Daddy, I got this.")

(Telling Daddy all about the slide.)

Our afternoon concluded with a visit from Sammi. She taught Ellie how to play with her new blocks, she did a little bit of artwork, and she made us laugh.

(Ellie normally takes her bottle right out of our hands. But she let Sammi hold the bottle.)

(Artist at work.)

If you live somewhere with this extra weekend of spring, enjoy!

Friday Fun.

2012-01-06T12:11:00.000-05:00

After a few weeks of holidays-travel-colds-cold weather, today we are trying to enjoy the sunshine between knocking off items on the "to do" list. The basement is getting organized, Ellie's toys have been sorted and removed from their boxes post-Christmas, and Matt and I filled about five giant bags for Goodwill. Ellie is asleep next to me on the couch following some a run and some swinging time this morning.

(Winter isn't so bad when you can swing.)

(Yep, that's a yawn mid-swing.)

No deep thoughts for today, just happy to have the weekend upon us. And now, I'm going to try to move a sleeping Ellie to a nap location that doesn't require constant supervision. I'm ready to conquer more "to do" items before we head back outside.

(Crazy hair.)

(Ellie loves this toy. She can close the animals, but can only open the panda.)

(Friday Phone Dump. If you are a fellow instagram addict, I'm "meganlando.")

P.S. You may have noticed the note at the top of the blog about Ellie's first birthday giveaway. Start getting excited, because we're giving away over $200 worth of prizes to celebrate the big day. If you're not a follower yet, you may want to click on the "Follow" button on the top left, or the "Google Friend Connect" button on the right. This is going to be great, and you don't want to miss out!

Ten Months.

2012-01-04T08:50:00.001-05:00

Ten sounds so close to twelve, doesn't it?

Ellie, I know I write the same thing every month, but how is time flying by like this? Today, you are ten months old.

Here are some glimpses of our past month:

* At the grocery store, you are big enough to sit in the cart. You "talk" to everyone we pass, blowing raspberries and saying "ah-ba-da-la-la-di-da." We have no clue what you're saying, but we know your message is important.

* Twice in the past week, you've pulled yourself into a sitting position! Whoohoo!

* You love to feed yourself. Your new favorite food is turkey meatballs, which are a huge mess when served with sauce. You are not deterred by your lack of teeth. No plate is safe when you're around, because your chubby little hands grab at whatever looks edible.

* Yesterday you rocked on your hands and knees. Your physical therapist and I were very proud. You were very angry, because you'd rather work on standing.

* Ellie, you give great hugs and you love to listen to stories. This morning, you listened to one of your recorded storybooks and thought it was the greatest thing ever. You also love playing your drum and playing with your elephant ball popper. Sometimes, you can turn your ball popper on all by yourself, and you get startled.

* You love other babies and kids, and you like to pat them on the head. This is a problem when the other baby is smaller than you, because your "love pats" come across as whacks on the head.

We love you so much, Ellie. I'm already starting to plan a big celebration for when you turn ONE. We have many people to thank, and we have so much to celebrate.

Love, Mommy

(This book reads itself! Amazing!)

(Sitting in the rocking chair with Violet the dog.)

(Exhausted from physical therapy yesterday, Ellie napping under the coffee table.)

Holiday Woe.

2012-01-02T07:45:00.001-05:00

I know, I know, I said I was done with Christmas photos. But then, I Heart Faces decided to feature goofy holiday pictures, and, seriously, I couldn't resist.

Can't you tell she's happy about Christmas?

Family Christmas, Part 3: {Illinois}

2012-01-01T08:30:00.001-05:00

Family Christmas celebrations continued after December 25 came to a close with a road trip to Illinois to see Matt's family. Ellie was a gem. She got a little bored during the thirteen-and-a-half hour car ride, but she mostly slept and "talked" to us.

Our trip consisted of eating, seeing old friends, and spending time with family. Ellie visited her first aquarium and befriended some fishies. Much to my disappointment, and in spite of the several books about penguins I've purchased for Ellie, she didn't seem to notice my favorite flightless birds.

(At the Shedd Aquarium.)

(Ellie's favorite.)

(Special jellyfish exhibit... Amazing.)

(More jellies.)

(Ellie and Daddy.)

In other baby vs animal news, Ellie took interest in the doggie and Grandma and Grandpa's house, but only liked her when she was quiet. Ellie expressed her affection by grabbing the doggie's tail and ears repeatedly, causing the dog to walk away.

(Phone photo dump... mostly Ellie vs Doggie.)

(That baby is right behind me again, isn't she?)

We got to see Ellie's uncles and their significant others, and the girls did a little wedding dress shopping for Ellie's "almost-aunt." Ellie really liked seeing Anna in the pretty dresses. Ellie also received the funniest of her Christmas gifts while on vacation: A Build-a-Bear dog in a hot dog costume, named "Portillo" after the local hot dog joint.

(With Grandma and Grandpa.)

(New standing toy.)

(Matt and his cousin Terri.)

(Mike and Anna.)

(Mark and Lindsey.)

(Woah, holding the baby!)

(Playing with Grandpa.)

(Chillin.)

(Opening gifts with Almost-Aunt-Anna.)

Wow, I can hardly believe 2012 is here. Happy New Year, everyone!

Linking here and here.

Christmas Recap, by Ellie.

2011-12-31T16:23:00.001-05:00

Hi friends, Ellie here! This is my blog post to tell you all about my very first Christmas. My mommy said I could do the Christmas recap.

On Christmas Eve morning, Mommy and Daddy decided to go see trains and Critter Castles at the Botanical Gardens. They loaded me up in the car and we drove downtown and waited in a long line. When we got inside, the gardens were warm and cozy, so I took a nap. The next thing I knew, we were leaving. Mommy took some pictures, there's trains in the pictures. Someone built little houses and replicas of famous buildings from plants. Maybe next year, I'll stay awake. Mommy and Daddy keep talking about how much fun they had, and I feel left out.

(All made of plants.)

(Mommy loved this balloon.)

(The train tracks were made of plants.)

(That Bjorn thing is really comfy.)

When we went home, friends came over and we unwrapped some presents and the big people ate cake pops. No one ever gives me cake pops. I got to see one of my friends who is younger than me. He is bigger than me, but I'm faster and I hit harder. I hope Santa didn't notice. I have a feeling that I'll get in trouble for hitting soon, and that all these little babies will be bigger than me. Hmm.... This could be a problem.

(What, it's a love pat!?)

(Getting a little help with my presents.)

(My family. Mommy used her tripod to take this.)

We went to church with our friends and everyone sang pretty songs. This nice guy stood up front and talked. My "cousin" Jack asked "Who's Herod?" I was wondering, too, because Herod sounds like trouble. At the end, the grown ups held candles and kept them far away from me. After we said hi to all of our church friends, we went home and Mommy and Daddy told me to go to bed. They said that Santa only visits kids who are asleep. Mommy kept tracking Santa and saying that he was in places like Australia and New Zealand.

In the morning, I woke up really early to see about this Santa business. I guess he came to our house, because I had a stocking and presents. Our family all had a lazy breakfast while we opened stockings. Santa got me some cool books and he wrapped them in paper. Paper is my favorite present.

(Woah, I like this paper!)

(I like clothes.)

I think Santa ignored the whole hitting thing this year, because he also brought me a drum. Mommy said that next year, we'll have an elf to monitor my behavior.

I opened about a billion presents and a ton of paper. All that paper wore me out, so I took a break during present opening for a nap. When we were all done with presents, Mommy and Daddy and I took a walk around our neighborhood and Mommy and Daddy bought batteries. They said it was a "rite of passage" to get batteries on Christmas. I'm not sure what that means, but I think it's a rule for parents or something. Daddy said all these noise making toys will "drive him to drink." If he's thinking about drinking my milk, he's in a lot of trouble.

For dinner, we went to see friends. They got me a new baby to be friends with for Christmas. She was smaller than me, which is unusual. I tried to say hi, but she didn't really do much. Good thing her big sister is my friend, too, because she played with me. We ate turkey, potatoes, and cranberries, and I fed myself. Some more friends came over for pie and cookies.

(Hi, baby!)

(Christmas joy, right here.)

(Photo by Daddy.)

You know, I think Christmas might be my favorite holiday. The morning after Christmas, my family all piled in the car to drive to a far off land called Illinois for more family fun, but Mommy says that's another blog post.

Happy New Year, friends!

Love, Ellie

PS. Here's a little video that makes my parents laugh.

Looking Back - 2011.

2011-12-29T12:12:00.001-05:00

2011. This year has been hard, good, exciting, joyful, and just plain full. I found this fun little way to look back from Ashley Sisk, and I thought I'd share. Each caption has the prompt she suggested, and I've linked back to the original posts for those of you who are new. Happy New Year!

(Me. Matt took this photo in August on our mini-vacation before Ellie's heart surgery. I look back on this year and I'm amazed at how much sweet Ellie has been through, and how much she put us through! This was such a scary time, and now, we are okay.)

(I love you. I love seeing these two together.... Even though you can't really see Ellie in this photo.)

(Still laughing. We took Ellie to a park and let her play in the leaves. She wasn't upset when Matt snatched one out of her mouth, which was out of character. Turns out, she had one stashed up her sleeve! )

(Winter Wonderland. Thanksgiving in Lake Placid was beautiful. First "real" snow we saw this winter, despite the few random flakes that fell Halloween weekend.)

(Birthday. Yep, Ellie's actual birth day. I think Matt took this? She was born via emergency c-section and came out crying, much to our relief.)

(Friends. Ellie and the neighbors at a party. Don't they look so grown up and intense? I wonder who they are gossiping about... I thought this wouldn't start for a few more years!)

(I Was Inspired. I ran the Marine Corps Marathon in October, and ran a PR. Race inspiration came from an old running buddy and from Ellie. Race training help came from Matt, who let me do what I needed to do in order to train, even if I woke him up early.)

(Spring Fever. Christina has these flamingos sent to our front yard to celebrate Ellie's two month birthday. They made me smile, and the neighbor kids loved them, too. The flockings occur each spring.)

(Travel or Vacation. Ellie bundled up in the snow at Lake Placid during our crazy road trip.)

(Summer Days. This is where I spent my summer vacation.)

(A Day in My Life. I spend a lot of time reading with this little munchkin, specifically "Hippos Go Berserk.")

(All Smiles. This is one of Matt's favorite photos of Ellie. I can't get over that smile.)

(Autumn Harvest. We took Ellie to Cox Farms in October. The absolute highlight for her was this pumpkin.)

(Home. Home from the NICU after three weeks, this photo brings tears to my eyes even nine months later.)

(Celebration. Confession, I did not make or even buy these cupcakes. I take it back, I think I got one? But I took this photo with Matt's family in town to celebrate Ellie's baptism, and that celebration was a very big deal.)

(Let's Do it Again. Hiking with Ellie is a fun little adventure.)

(I Miss You. My brother came to visit and meet Ellie. I miss him, and I hope he comes back soon.)

(Beautiful. The first time I saw Ellie after her transfer to Children's and surgery.)

(Dress Up. Sometimes, baby elephants party too hard. We had a good Halloween.)

(Macro. More Lake Placid. I can't help it.)

(Holidays. Ellie started getting Christmas gifts at Thanksgiving.)

(More Holidays. Because I love this shot.)

(My Favorite. I love these two.)

(Don't Ever Change. I love this laugh.)

(Just Because. This one makes me smile.)

(Hopes and Dreams. Praying for all of us to be happy, healthy, loving and constantly learning in 2012.)

Pen Ready.

2011-12-28T08:09:00.000-05:00

As I'm sure you've all figured out, I lug my camera everywhere.

Okay, almost everywhere. I ~~love~~ ~~adore~~ am obsessed with my DSLR, but I admit, sometimes it's a bit too big to carry. I mean, I already carry a diaper bag everywhere, too, right? Sometimes, I would love to have something smaller that didn't require quite as much thought. I shoot in manual, and since I'm still learning, I mess up frequently. (If you're looking for examples, just scroll through this blog!) I also spend a lot of time learning my camera, reading photography websites, and just playing with the settings and features. A lot of times people ask me about the time it takes to learn. Well, the answer is a lot of time, and I still have a long way to go.

There's a new trend you may have seen. Olympus has a much smaller camera out - the Olympus PEN® E-PM1. From the looks of things, there are way less buttons and bulk. I would love to try one. Olympus gave over 1,000 people cameras in six cities, and had them start shooting. The results are some pretty sweet photos, which you can see at http://penready.com/. These aren't "photographer" people, these are just regular people with cameras. Sadly, I am not one of them.

Add it to my wish list to supplement my DSLR!

This post is sponsored by Olympus.

Merry and Bright.

2011-12-26T05:46:00.000-05:00

I hope you all had a wonderful Christmas!

Here's a quick glimpse of ours. Ellie will be posting later in the week to tell you all about her first Christmas.

Unto Us a Child is Born.

2011-12-24T04:47:00.000-05:00

Christmas Eve is here, and the time has come for us to share our Christmas card shot from this year. Merry Christmas with love from Ellie. Wishing you all the best!

But the angel said to them, “Do not be afraid. I bring you good news that will cause great joy for all the people. Today in the town of David a Savior has been born to you; he is the Messiah, the Lord. This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger. - Luke 2

Santa's Almost Here.

2011-12-23T08:24:00.001-05:00

Ellie's first Christmas is almost here. Where did December go? We've had unseasonably warm weather here, which reminds me of California Christmases and makes me smile.

I know I've been talking about self-feeding a lot, but I feel like Ellie's willingness to self-feed is her Christmas gift to us. Plus, she's teaching us new techniques for when the spoon is too much work.

Ellie has also been trying to convince Santa to keep her on the "Nice" list, although her three hours of wakefulness in the middle of last night may give Santa pause. Ellie claims she was just practicing her "waiting for Santa Claus" gig. We're trying to break that habit.

I am eagerly awaiting a visit with friends and their two little boys, church services on Christmas Eve, some family time, and watching Ellie tear into her gifts on Christmas Day. She's convinced that the paper is the best part, which is awesome. She'll be happy to know that the paper contains boxes, which are a close second place for best gift ever. (And toys are pretty awesome, too.)

Merry Christmas to you and yours!

****

PS. I was going to post something about the ABLE Act, and I will.... another time. But I know there's a lot of readers who are praying people, and I'd rather request your prayers. The Kelly family has no connection to the Down syndrome community as far as I know, and I've only met Patrick a handful of times. This is not something I'd normally blog about, but it's THAT important.

His family is praying for a miracle, and preparing for a hard goodbye at Christmas.

His story is here.

Wednesday Loves.

2011-12-21T12:31:00.001-05:00

Some things I love today.

Self-feeding. Watching my little munchkin attempt to cram 3-4 Cheerios in her mouth at a time cracks me up, and causes me to become hyper-vigilant parent. Ellie is still learning her limits, but she's so excited that she can get multiple Cheerios in her mouth that she does. And then I take them out.

("Mommy, don't you take my Cheerios!")

Christmas preparation. The gifts are all wrapped and under the tree. Our Christmas Eve plans are set. I even went to Whole Foods today to purchase the necessary items for a corn recipe, including a gluten free version of the crackers. Can you tell my husband is from the Midwest? This was his one Christmas food request. In case you have a Midwesterner in your life, I'll share with you, too. It's pretty good. I put extra crackers in last year, and it worked well. (Note: I'm not even close to a food blogger.)

Baked Corn

1 1-lb. can cream-style corn

1 c. milk

1 egg, well beaten

3/4 t. salt and pepper

1 c. cracker crumbs

1/2 c. buttered cracker crumbs

Heat corn and milk. Gradually stir in egg. Add seasonings and cracker crumbs. Place in greased baking dish. Sprinkle buttered crumbs over top and bake at 350 for 1 hour.

(See, I'm not a food blogger. Instead of a picture of corn, you get a picture of Ellie.)

Christmas tutus. Ellie received this outfit last weekend, and I love it. She's such a rock star with her "Very Merry" shirt and pink ruffles. I'm in love.

(In the second shot, she was blowing raspberries. Love that face!)

Have a wonderful Wednesday!

PS. I've been getting variations on these questions a lot, so I'll answer. "Do you put Ellie's hair in pigtails every day? Does she cooperate?" Yes, I style Ellie's hair in pigtails almost every day. She has a lot of hair, but just on top. (It's like reverse male-pattern baldness.) Occasionally, she gets a ponytail or just a hat, but doing nothing leads to one tangled dreadlock. She cooperates if she has something interesting right in front of her, but there are times she sees a different toy and tries to roll away. I'm not sure how pigtails will work once crawling begins. I admit, I don't want Ellie to have the stereotypical "bowl cut" for kids with Down syndrome. I'm not sure if antennae are better....

A Little Christmas Joy.

2011-12-19T09:46:00.003-05:00

Today's post is a quick one, as we're off to the ophthalmologist to follow up on Ellie's tear duct. She just wanted to share a little bit of holiday cheer with her friends.

(I helped with the spelling.)

(Holiday cheer? I meant woe.)

(Blowing raspberries.)

("I can get it open before Mommy sees me...")

(Our tree!)

(A serious chat with a polar bear.)

Merry Christmas.... 6 days left!

Linking up here, too!

Santa, Parties, Sick Babies, and a Box.

2011-12-18T05:52:00.004-05:00

Before I let Ellie start, and before you all worry about Ellie too much, she is doing much better, had milk twice, and is angry that I won't feed her more. So we're good now. That being said...

Things That Have Happened Since Mommy's Last Blog Post
by Ellie L.

1. My mommy made even more yummy food. And she bought juice boxes.

2. We went to a party with some of our other friends who have Down syndrome. I spit up a lot. The party was super fancy. I saw Sammi and that made Mommy really happy because she said Sammi brings sunshine.

3. I met Santa!

("Wow, that beard looks fun to pull!")

4. I threw up. On the way home. Twice. I was still really happy until I realized that Mommy and Daddy wouldn't feed me. Then I was grumpy. I like food. A lot.

5. Mommy called my doctor and I guess the doctor doesn't like food. The people Mommy talked to told my parents to made me drink pedialyte and not play with anyone at the party. Daddy shoved something in my ear and said, "98.3, so that's okay." And they told other kids not to come play. That wasn't cool.

6. Some of Mommy and Daddy's friends came over, but they made me stay far away and told me I had to sleep. They said that the doctor called me "contact contagious." I didn't like that name very much. And I was grumpy about the whole pedialyte thing. I watched "Baby Signing Times" a lot, and I guess I fell asleep, which is weird. I don't believe in sleep, so I have no idea how that happened.

7. I didn't get to wear my party dress, and that was sad, but after everyone left, Mommy looked at her watch and said, "Eight hours!" and then gave me a tiny bit of milk. I cried and said in baby language, "Mom, seriously, I am so hungry, give me more!" Mommy said no, though. And then I slept. But not for long. And then I got more milk, and now Mommy says she is tired because I woke up at four and so I am helping her out by writing this blog.

Oh, and Mommy and Daddy are also glad they got to see their friends. Some of them came upstairs to meet me, but they didn't pick me up or anything. That was another not cool for my day. I smiled all sweet, and then when they left, I'd say, "AHH!!!! Don't abandon me!!!" I am loud. They all said I'm cute though, even though Mommy took my pigtails out and I was angry.

I feel much better now. I should probably help Mommy out today, she and Daddy are tired and I think they're blaming me!

("Grandma got us a microwave box! Shh, I'm hiding in it!")

And Then She Snapped. Linking up. And lots babies with Santa here.

Value.

2011-12-15T14:45:00.001-05:00

If you're a regular reader of this blog (or even if you're not) you probably know that my daughter Ellie has Down syndrome. I thought I'd write much more about Down syndrome when I began this blog, but to my pleasant surprise, Down syndrome is not our life's focus, although that extra chromosome does impact many daily activities.

I mentioned recently that on Tuesday, Ellie had three different early intervention sessions. She's never napped so well, and because therapy was the only thing on our agenda that day, I spent a lot of time thinking about milestones and skills. I spent some time checking out the milestone charts (typical and Down syndrome charts) and mentally reviewing where Ellie has been in the past nine months. Ellie's skills are "scattered," meaning she has some age-appropriate tasks mastered, but she hasn't hit every milestone along the way.

It's the crawling that gets to me. Ellie can push up on her arms. She can get her legs underneath her. She wants objects that are in front of her. She cries her little eyes out when she can't get to them with a combination of rolling and using sad little puppy dog eyes. She hates to practice crawling. I don't understand why, because she loves moving around and playing with toys, and I think her life would be way easier if she could just go get her toys. But Ellie isn't crawling yet. Sometimes, that makes me sad. Her physical therapist is wonderful. We do the exercises. Ellie can do each individual part task required to crawl, but the big picture escapes her.

In those moments, I have to remember the rest of her story. The fact that she started out life with a major surgery and the NICU. The fact that she had open heart surgery, and couldn't really use her arms for six weeks. The fact that she has low muscle tone. And most importantly, the fact that when Ellie is 25, it won't matter if she crawled at 10 months or 18 months.

In the greater scheme of things, I know that milestones are just marks along the way. They certainly aren't the source of Ellie's value. What is valuable to me in the milestone realm is how hard Ellie works, and I think that's part of why I get down about crawling. She works hard, and I am hoping for a payoff in terms of more independence for her.

So of course, on the same day I'm a little bit sad about crawling, here's what Ellie decided to do:
* eat a Cheerio with a pincher grasp
* with assistance, pull to a stand
* play with two objects (one in each hand)
* drink from a straw cup (non-squeezy kind.)

And as proud as I am of all those things, they don't really matter. Ellie isn't more valuable this week than last because she can almost pull to a stand. The day Ellie crawls, we will celebrate, but she won't be any more valuable than she is right now.

Not that I'm going to hold back on bragging. Because Ellie can eat a Cheerio!

Yep, she seems to know right when I'm sad for her, and then she shows off, in order to say, "Mama, I'm just fine."

I think that Ellie is teaching us important lessons on value, especially since we live in an achievement-driven culture. If my kid is the last to crawl, I know she still has worth. I hope I communicate that to her.

On a totally and completely different note, we're gearing up for some holiday fun around here this weekend.

Ellie is ready for the Christmas party season!

Bringing a Little Holiday Cheer.

2011-12-13T05:24:00.001-05:00

Forgive me. I posted twice in a row with hardly a mention of Ellie, and no photos. Allow me to make it up to you with an extra dose of Christmas spirit and your cute baby fix.

Are you clapping along yet? I absolutely love it. I feel the urge to hug someone and sing along. Thankfully, Ellie is nearby to hug, and she is still too young to criticize my singing.

I'm excited that we'll be celebrating Ellie's first Christmas here at home. We've been decorating, baking, and generally preparing for festivities of the season. Ellie has gotten into the gifts twice (extra impressive, as she isn't crawling yet) and she loves the decorations, the lights, and the Christmas carols.

("When Mommy turns around, the green one is mine.")

("Look out Santa.")

On Monday night, Ellie "helped" the neighbor with the lights. Have I mentioned how much I love our neighbors?

("I think I should just eat these lights." Not great quality, but so cute. Ellie adores him.)

(Someone is fresh from a nap.)

And in the spirit of holiday cheer... My tripod is here! So I'm leaving you with a random tree photo, because I was experimenting.

Have a festive Tuesday. Grab some tinsel, bust out with song and dance in the mall, or at least eat some cookies or something. We've been celebrating all of December because, hey, why not?

This post is sponsored by T-Mobile.

Feathered Friend.

2011-12-12T07:07:00.002-05:00

Today I'm just sharing a glimpse of our walk through Georgetown when my dad and Kim were in town.

One of my favorite sites, I Heart Faces, is focusing on pets this week, and this little guy was the closest I could find, not having a pet of our own. Matt was partial to Aladdin the Camel, but since I only got a terrible shot where the poor guy has camel-red-eye, the seagull won.

Celebrate the Season.

2011-12-11T06:48:00.001-05:00

You know you're in for a treat when the email exchange goes something like this:

Christina: "I have a Groupon for Hillwood Estate. There's some Russian Winter Festival. Want to go?"
Megan: "Sure, what is it?"
Christina: "There's a mansion and some gardens and coffee, and a snow princess? I'm not really sure, but I heard it was good, so I got the Groupon"
Megan: "Okay, sweet."

(That's a summary, but you get the gist.)

A phone call to ensure we could use the Groupon for this special festival included the phrase "avoid the lines." We weren't really sure what the festival was about, or how big it was, or why the lines would be so long for an event we'd never heard of, but we pulled up next to the Netherlands Embassy and were directed to the parking area for Hillwood Estate. The place looked somewhat crowded, but we avoided any lines and received our visitor tags. They read, "Fabulous."

For all our questioning, the event was a winner. We toured the Merriweather Post mansion, in all it's 1920s glory. We ooed and awwed over the fashions, we saw a room of Russian icons, we admired the wedding feast setup.

(Hillwood Christmas Tree.)

(Just one of the many fabulous details.)

Because the festival was in full effect, some special activities were set up around the grounds. Our favorite was the hat making. (Ignore the fact that the hat making was aimed at small children and my small child was out and about with Matt.) We dug into the craft supplies and made our own blinged-out kokoshniks.

(Hat-making supplies.)

(The finished product, Christina at the gardens.)

After recharging with a cranberry apple crisp (amazing!) we were off to explore the gardens and bridal fashions of the 1920s. My camera battery ran out during the hat-making adventure, so forgive the iphone photos throughout this post. Before heading home, we listened to a Russian folk group and participated in a traditional circle dance.

Not a sponsored post. Just a recap of a fun day.

And if you want to make your own kokoshnik, give us a call. We're pretty good.

(The tree.)

(Folk music! Sorry about the poor photo quality, I took this on my phone.)

(Just a little banquet setup.)

(Card table.)

(More fun mansion details.)

(We tried the camera high, low, whatever. Self-portraits were MUCH easier before we both got DSLRs. Finally, I just held the camera up to my face.)

Friday Randoms: Doctors, Standing, and Decorations.

2011-12-09T09:07:00.002-05:00

Yesterday, Ellie went to the doctor for her nine month well child appointment. Her development was in the "monitor" range in most areas, which we already knew. (We've been monitoring and receiving early intervention since she got home from the NICU.) In one area, however, Ellie was quite advanced. Care to guess?

Yep, social. I can't pretend to be surprised. The doctor asked if she's gesturing yet, adding that it would be a bit early. I told him that she puts her arms up when she wants to be picked up. Ellie was staring intently at the doctor as I demonstrated by asking, "Ellie, up?" She looked at me, looked back at the doctor, and kept her arms firmly down. He laughed, because she clearly did NOT want up.

We also received the stats you've all been waiting for...

25.5 inches tall, weighing in at 15 pounds, 3 ounces, and still hanging on by a thread to the typical growth chart.

We received a baby hiking backpack as a great hand-me-down from some friends. The requirements are "able to sit independently" and "weigh a minimum of 16 lbs." We were fairly certain that the sitting portion would be the hold up, but we were quite mistaken. So close, little one!

Ellie has been doing a better job of sleeping through the night, but is still waking up around five. Yep, that would be five o'clock in the morning. She's happy, it's working for her, but wow, I wish she could share some of that endless baby energy with the grown ups.

(Working on standing with her rear up against the couch. This exercise evokes intense emotions.)

We've been getting ready for Christmas during this Advent season. Last year was full of so much anticipation as we waited for little miss ~~"is likely to be a preemie"~~ "full term plus a day" Ellie, and this year is more fun and parties and watching Ellie enjoy the lights and wrapping paper.

(Baby Santa has bad hair days sometimes.)

(New tradition: Displaying previous years' Christmas cards. We got a few cheap frames, and every few years, we'll do a collage frame of them all.)

(The stockings hung on the banister with care, and a Pintrest-inspired wreath of cards.)

Speaking of wrapping paper... Just because Ellie isn't crawling doesn't mean she can't cause trouble. She got into the gifts yesterday. I snatched a package just before the tissue paper went into her mouth. Seriously, she is a baby on a mission. I thought she was sitting far enough away from the goodies stacked under the tree, but her super flexibility allows her to bend in half from a sitting position, grab whatever she's not supposed to be touching, and sit back up triumphantly. This little one needs to teach yoga. Or be a gymnast. Or a contortionist.

(Interjection: As I write this, Ellie is playing on the floor. I just witnessed a total crawling fail, because she was trying to crawl with one thumb in her mouth. Crash. Boom. But she's totally fine.)

We'll attend our first Christmas party of the season this weekend, and I am going to try to get out and run, too. A sore throat and some intense rain have kept me from running for a few days, and I need to pick out a goal race for the spring. Locals, I'll take suggestions.... anywhere from 10K to full marathon, clearly, I am early in my decision making process.

And because today is Friday, here's my weekly-ish Instagram dump.

(We wish you a Merry Christmas!)

Have a great weekend!

P.S. Ellie fed herself a few puffs this morning. If you have a child with Down syndrome, you know this is a very big deal. I put them in a teacup and held the cup - made the "picking up" step easy. The "put puff in mouth step" is still a work in progress! At least it's motivation to keep the carpets clean, now that she can pick dirt up and feed it to herself... Gross.

I am sharing my holiday home decor and cleaning tips for the chance to win prizes from The SITS Girls and Great Cleaners.

Grandma Love.

2011-12-07T05:04:00.000-05:00

Ellie loves visits with Grandma. We went to the swings, we went for walks, and I even got to run by myself.

("Thanks for visiting!")

("Grandma, look at my cute shirt! I'm a snowbaby!")

("Grandma, I want to swing HIGH!")

This visit, Grandma got to see both Ellie and Christina for gingerbread house fun.

The gingerbread tradition began about six years ago, and while Christina and I haven't managed to construct our houses every year, we love buying cheap gingerbread house kits and putting together the houses. We usually end up knocking one down, repairing it with an overabundance of frosting, and decorating with whatever leftover candy we can dig up from Halloween. Or Easter. Or Valentine's Day. Or Christmas 2003. Combined with a few random craft items, we end up with something... festive. I'm not a craft blogger, I never will be a craft blogger, and I know that drawing on a marshmallow with Sharpie and using toothpicks are in violation of the "all edible" gingerbread house rules.

(The finished products.)

(Serious houses require serious photos. Christina in action.)

(That would be a heart, just in case you can't tell.)

(Christina's happy snowman.)

(My happy snowman.)

Whatever, we have fun. I know I have friends who build crazy, intense houses, but I bet they don't laugh as much as we did.

Grandma also got to see Ellie's developmental and physical therapy, and she was very impressed. The nice thing about grandparents is that no matter what Ellie does, they think it's amazing. Come back soon, Grandma!

PS. Participating in Wordless Wednesday here and here.

Swing.

2011-12-05T12:33:00.001-05:00

Almost every day, we take a trip to the swings. They make the munchkin happy.

(Happy swinging feet.)

Head over to I Heart Faces for more focus on the feet.

Family Christmas, Part 2: {Grandma Sally}

2011-12-05T07:12:00.001-05:00

My mom arrived yesterday, so we headed out to see Mt. Vernon by Candlelight. This is the third year in a row Matt and I have attended this event, which is a tour of George Washington's home decorated for Christmas with various "historical figures" sharing their stories.

(Photo by Matt.)

(Someone was sleepy.)

(Perhaps I should add a compass to our tree?)

(Or maybe some books?)

The experience begins with a walk through the entry area, where beautiful trees are on display as you wait. You get a nametag designating you as a "Guest of ______" (fill in historical figure who visited Mt. Vernon at Christmas) and are called by group to the outdoor hospitality area, which features carolers, cookies, cider, and my personal favorite, Aladdin the Camel. George Washington bought a camel for 18 shillings (75 bucks) so a camel is on display at Mt. Vernon.

(I wonder if I could buy a camel for 18 shillings?)

After the hospitality area, we were off to the mansion, where we heard from Martha Washington and others, followed by a quick spin past the blacksmith shop.

I love Christmas.

(The blacksmith making a "J-hook.")

(Mt. Vernon in gingerbread. We're making gingerbread houses today. They won't look like this.)

(Before the tour. We took her out of the Baby Bjorn and she was still asleep sitting up.)

And I must have been really good this year, because Grandma Sally retrieved a crying Ellie at three o'clock in the morning.

Nine Months.

2011-12-04T06:04:00.001-05:00

Little Miss Ellie,

How in the world are you nine months old? The past nine months have been so full, so fun, so hard, and oh so sweet. You look older. I'm convinced that the doctors did a good job fixing your heart, because now you have plenty of energy to eat. You eye everything on our plates and open your mouth like a baby bird in hopes we'll share. The other day at lunch, you swiped my plate and it landed on the ground!

You have already received a fair number of Christmas gifts, and lately you've been loving your pull toy gorilla from Aunt Patti and your blocks from your godparents. You also have taken great joy in staring up at the lights on our Christmas tree. Your attention to people is wonderful, and hilarious. I think you try to get out of therapy tasks by making friends with your therapists. I've heard this is common in kids with Down syndrome, and one stereotype that holds true for you is good social/emotional intelligence. You look to Daddy or I when you want something that seems too hard to get on your own - a piece of food, a toy, a piece of paper.

("Mommy, check out this box I found. I think it's full of gingerbread houses."

Ellie, I have a confession to make. The other day, I had to fill out some papers for the doctor. I had to say what you are able to do and not able to do. It's part of being nine months old, but I was scared to fill out the papers. Some tasks are harder for you than for other kids. You can sit up, you can stand supported, you can easily transfer items from one hand to the other and cross midline. You use your arms to show us when you want "up." But your arms just aren't ready to push you into sitting or pull you to a stand. I thought filling that out would make me sad for you, because you work harder and things still take longer.

Then, I got to this question: "Has your child had any major medical events in the past few months?"

Just open heart surgery. Oh, and a blocked tear duct.

I am so proud of you. You had your sternum opened and your heart fixed in the past few months. (And we're working on that tear duct, but honestly, it seems so minor to me.) I don't care if crawling and walking take you longer than your friends, you are pretty dang amazing!

We just started watching "Baby Signing Times" and you love it. I have a feeling you'll be a big signer once you figure it out. You love other kids. Your friend Violette (Missy's daughter) sent you a video to say "Thank you" for a Christmas card and you nearly climbed through the computer to watch her.

("Mommy, this gingerbread house tastes like cardboard!")

Ellie, you are deliberate. You eye toys for a long time, then swoop in and grab them. You are getting less patient with pigtails, because you always get distracted and want to play. You can play "Peekaboo Barn" on Mommy's phone, which you did during our roadtrip. Daddy held the phone, but you hit it yourself to make the animals appear.

You are becoming more interested in real animals, too. You recently met a puppy in our neighborhood after you stared him down on the way home from the swings. His owner let you meet him, and you just wanted to stare. You didn't mind the puppy in your face, but you were angry when I tried helping you pet him. When you are at your angriest and saddest, we go to the swings, and that usually calms you down. As the weather gets colder (and your hatred of socks stays the same) I have NO idea what we'll do. Maybe you'll just wear a snowsuit and I'll stick you in a swing anyway?

Ellie, thank you for being such a fun baby, an easy baby (90 percent of the time), a funny baby, and a sweet baby. Thank you for making friends with strangers, for making us laugh, and for giving great hugs.

You light up our lives, and I am so excited to watch you in action on your first Christmas! We are blessed to have you.

Love, Mommy

PS. Still, no teeth. Maybe for Christmas?

Family Christmas, Part 1: {Dad and Kim}

2011-12-03T06:51:00.000-05:00

Babies and Christmas. Seriously, I don't think there's anything quite as entertaining.

(Sometimes, baby Santas get grumpy.)

(Some swing time with Pops cures the grumpies.)

(Photo by Pops.)

We've been celebrating Christmas with my dad and Kim, and Ellie has been enjoying herself quite thoroughly. She's unwrapped gifts and she's rocked her Santa outfit from my mom a few times. Christmas cards are beginning to arrive in the mail, and the December calendar is filling up quickly.

I love it.

Christmas lights and decorations make me happy, so we headed downtown last night to check out the National Christmas Tree, which is surrounded by state trees. We weren't sure what to expect, because the former National Christmas Tree is no more following a February windstorm. The new tree is kind of short, but I thought the decorations were better. Just like last year, we went the weekend after the tree lighting, which unfortunately meant that Santa was not yet in attendance and the Yule Log was not yet lit. Oh well, there were trains and trees and lights.

(Someone was a bit bored at first, but she perked up.)

(The new, shorter tree with the Washington Monument.)

(Photo by Kim.)

(What, is there something going on? I'm trying to take a nap!)

We followed all that up with a walk around the White House and dinner. After the grandparents leave today, Ellie won't have much time to be sad, because Grandma Sally arrives tomorrow! Bring it.

(Treasury Building.)

(Have I mentioned that I love Christmas?)

(State Trees.)

(There were presents, too, but Ellie prefers paper.)

Grandparents.

2011-12-01T18:32:00.001-05:00

Ellie had fun with her grandparents today.

(Snuggles with Pops.)

("Too comfy to open my eyes for a photo op.")

(Me and my dad.)

(Dad and Kim.)

("Woah, lights!")

("Hi Pops, I'll be snuggling here now.")

(This is how Ellie rolls.)

("Hey, when do we get to play with the paper?")

We hit up the Spy Museum and Old Town, hung out around the house a bit, and watched Ellie work her charms.

Linked here.

Mostly Wordless Wednesday.

2011-11-30T18:07:00.000-05:00

The family holiday craziness continues tonight with Grandparents, Part I. Just popping in to share a little photo love from the past few weeks.

(I know, it's not Friday, but I'm sharing anyway, because I forgot last week. MeganLando on instagram if you care to join the fun.)

Are you getting ready for any big family Christmas events? (Or other holidays?) Our tree is trimmed, the stockings are hung, and the cards are out!

PS. Props to anyone who knows the story of the three matching ornaments, especially if you're not my facebook friend.

The Doctor is Online.

2011-11-29T09:14:00.065-05:00

Thank you to 2nd.MD for providing me with a $200 stipend to test-drive this revolutionary online medical service.

If you know me, or know Ellie, or have ever attempted to make plans with either of us, you know that we spend a lot of time visiting various medical specialists. We visit some due to Ellie's corrected GI blockage and repaired heart defect. We visit others because the list of specialists that kids with Down syndrome visit in their first year of life is about a mile long - Ellie's eyes and ears and thyroid must be checked. And she needs bloodwork frequently. Add those appointments to the general well-baby checkups, immunizations (including the monthly Synagis), physical therapy, speech therapy, and developmental therapy, and you have one very busy baby girl.

I had the opportunity to review the services of 2nd.MD. The concept is fairly straightforward. Clients sign up for the website, type in key words or symptoms, and can schedule an appointment to speak with a physician. Looking through the physician list, I saw names of hospitals I recognized, which gave me confidence that the doctors would prove to be well-equipped to answer questions about my child's medical needs.

I logged onto the website and searched for pediatrics, GI, and genetics, and found a physician who seemed well suited to answer my questions. I clicked on "Dr. Isreal Kochin." He was unavailable, so I requested an appointment. I had some trouble at that point, because I couldn't seem to find available appointments, but an email to customer service was returned promptly and I'm fairly certain the problem was operator error on my part. I set up an appointment and was given the opportunity to upload medical records, summarize my concern, or even request medical records from the hospital to be sent to 2nd.MD. The video setup is easy if you can use Skype, and if you have the newest version of Adobe Flash Player. If (like me) you need to update Flash Player, this is the point at which you will email customer service again because you've been outsmarted by your computer. I never did get the service to work on my Mac, but I could have pursued a phone consult if that was my only computer.

The customer service response time was impressive. I believe in good customer service, and 2nd.MD delivers. My call was returned about three minutes after they opened. I successfully installed the Flash Player, and was off and running after I checked my microphone. Five minutes before appointment time, I logged into my 2nd.MD account and was sent to a virtual waiting room, or "Consult Lobby." Instead of reading outdated People magazines, I sat on my couch and finished a cup of coffee.

(The virtual lobby also offered random facts and inspirational quotes.)

The doctor logged on and I felt like I was using Skype for the first time, "Hey, I see that guy!" He had the goals of the appointment (a question about reflux) and we reviewed Ellie's history. Since I've listened to rounds for Ellie frequently, I was able to succinctly list her concerns and needs. "Eleanor is a full-term 8 month old baby girl diagnosed prenatally with...." (I felt like I was on Grey's Anatomy. But I didn't say that out loud, because that would be super geeky.) We had some connection issues with the microphone - Not sure if it was on my end or his, but the physician quickly obtained my number and called so we could continue the appointment.

(Hello there, doc!)

The doctor answered my questions, and proved to be quite knowledgeable about the specifics of Down syndrome. I'm not sure if that was based on his prior knowledge or research specifically for this appointment, but he was helpful. I'll give him extra points for exclaiming at Ellie's cuteness and using people-first language, calling Ellie a "baby with Down syndrome" instead of a "Downs baby." At the end of the consult, the Dr. Kochin ran through the expected disclaimer that an online consult does not take the place of an exam. He was able to answer my question and met the goal of the appointment.

The services of 2nd.MD aren't cheap, most appointments cost $150-200 for twenty minutes. However, for anyone who lives far away from a specialist, $200 may be a small price to pay for a consult, especially when factoring in time away from work and travel or hotel expenses. I would imagine the same is true for anyone paying out of pocket for specialists, or who is facing a lengthy wait for an appointment. I joked with a friend yesterday that I need a personal assistant to handle Ellie's appointment scheduling, and I cannot imagine if I lived hours from the nearest Children's hospital or Down syndrome clinic.

2nd.MD is on Facebook and Twitter. Their staff is amazingly helpful, and returned calls and emails far faster than most doctors I've contacted. I filled out a survey after my appointment and received a call within hours asking how they could improve the experience. Yes, I had some technical difficulties, but effective troubleshooting made the process overwhelmingly positive.

Thank you again to 2nd.MD for sponsoring this blog post. Please click here to learn more about 2nd.MD. I was selected for this sponsorship by the Clever Girls Collective. All opinions are my own. #Clever2ndMD #spon

Bring the Merry.

2011-11-27T21:52:00.000-05:00

After our vacation adventure, we decided to decorate the tree. Ellie wasn't sure what was going on, but she loved the lights!

This is just the beginning of Christmas around here, so get ready to see much more celebration. And for more laughter, check out I Heart Faces this week.

A Bunch of Turkeys.

2011-11-26T23:10:00.003-05:00

Warning: This Thanksgiving post is going to be long, because when you're with my family, there's a lot of photos, a lot of laughs, and fun in the form of photo contests, snow golf, and of course, turkey. I promise, I am trying to control myself and just share a sampling of the photos from vacation. Family members, let me know if there's any other pictures you want to see and I'll email them!

I'll start chronologically. We packed Ellie up in the car and headed to my cousin's house on Tuesday, where we met up with some of the family, ate pizza, and realized that Ellie needs to work on her "making friends" skills. She met a baby who is a bit younger, and while bigger, not quite as quick on the swipe. My sweet little girl kept taking his toys. We had a talk later about sharing, but I'm not sure it stuck.

("Totally innocent, Mom!")

("How loud can you cry, Ellie?" Thanks, Aunt Kitty, for encouraging that one...)

The following morning, it was off to Lake Placid, where we encountered a winter wonderland. We walked around the town and grabbed a snack, and even made a brief visit to some Olympic sites, including the hockey rink from the 1980 Olympics.

("Who turned out the lights?")

For Thanksgiving itself, our day began with coffee and showing Ellie some snow. Then we headed over the river and through the woods to my aunt's house, where Ellie met plenty of family members and was spoiled rotten. She even enjoyed some turkey, cranberries, and potatoes. Ellie was always in someone's arms, or playing with her "cousin," or opening another present. (And yes, "cousin" is in quotes. What is the relationship between Ellie and my cousin's child? Second cousin once removed, maybe?)

("What the heck?")

(Thanks to my aunt for letting me steal this from facebook!)

("I got paper!")

We hit some golf balls in the snow, thanks to my cousin and her boyfriend and their idea to "snow golf." I was peer pressured into playing. In flats. And I'll use that as my excuse, but the reality is I'm painfully bad at golf.

I'm proud to report that my husband won the annual Fall Photo Fest. I took second with a picture of Ellie. A huge thanks to Aunt Bonnie, we love the throw and pillow Matt won, and I even put them in the guest room so our holiday visitors can enjoy them and be envious of Matt's skills and popularity.

(Winners.)

On Friday, we spent the morning taking a walk around Placid, and then spent some time with Danielle, James, Bonnie and Kitty in the afternoon. We ate lunch, we laughed, and said our goodbyes. Ellie was enthralled with James, and was sad to say goodbye to him.

The drive home took the vast majority of Saturday, but when we came home, Ellie helped decorate the tree. New York family, I love you all dearly and I can't wait until next time!

Linked here.And here.

Happy Thanksgiving!

2011-11-24T05:49:00.004-05:00

Fact: The average size turkey at an American Thanksgiving is 15 lbs.
Fact: The average size turkey outweighs my own little butterball.

Have a wonderful Thanksgiving. We are so thankful for those of you who follow Ellie's journey, including our blog friends, our real life friends, and of course, our family.

Two Years.

2011-11-21T03:08:00.005-05:00

Two years ago, our friends and family gathered as Matt and I said, "I do."

(Yep, I smashed cake. I know some people think it's not classy. That's OK, I smashed cake anyway!)

It was a good day, a great day, one of the best days of my life, right up there with the day Ellie was sent home from the NICU. But the wedding was only the beginning, because what has followed is two years of being immensely grateful for Matt's presence in my life. The last two years have not always been easy. The joyful news of our pregnancy followed by our heartbreak at Ellie's Down syndrome diagnosis, the struggle through the NICU and heart surgery have taken a toll on us. But there is no one I would rather have by my side than Matt, through difficult times and the fun times.

(Snowmageddon, December 2009.)

When Matt proposed, he said he could promise that our life together would be an adventure. He has delivered, and I know he will continue to deliver on that promise. I can picture us growing old together, laughing together, driving each other crazy, and falling more in love as the years go by.

(Climbing Mayan ruins on our honeymoon.)

We were married the Saturday before Thanksgiving. I like that Thanksgiving falls near our anniversary, so I can stop each year and reflect on why I am so happy to have Matt. I could write forever on the reasons he is amazing, so I'll just share the top 10 from our second year of marriage.

(Back in the dark ages, before we were married.)

10. Matt was understanding and encouraging of my desire to run a marathon less than eight months after having a baby. He woke up early to watch Ellie so I could go to the track. He didn't complain about the hours I was away.

(Out to dinner last year to celebrate Ellie making it to 20 weeks.)

9. Matt knew before I did that I wanted a nice camera. So he bought me one.

8. When I get crazy ideas ("Let's celebrate fall by going to an overcrowded, overpriced farm!" "Let's order a 500 pound dresser for Ellie's room!") Matt doesn't just go along with me, he's nice about it.

(At a wedding in January 2010.)

7. After I had an emergency c-section, Matt made me come home from the NICU each night to sleep at home, in our bed. Although I cried every single night, he knew that forcing me home was the best way to take care of me. He was right.

6. Matt is encouraging. He's my biggest cheerleader, and he's Ellie's biggest cheerleader, too.

(Visiting NYC, October 2010.)

5. Holiday shopping. My sweet husband hates to shop. He has gone shopping twice with me twice since we've been together, once for Christmas gifts, once for clothes. Yet every year, for every holiday, he goes to the mall (his least favorite place) to buy my gift. He generally goes on Christmas Eve or the day prior. He always comes home frazzled and tells me, "I hope you know I love you." I love him. A lot.

4. Matt lives what he says he believes.

3. Taking care of our family is always Matt's first priority. Always. He's an amazing dad.

(At the San Diego Zoo for Spring Break 2010.)

2. When I'm around Matt, I'm a better person. He calms me down, he makes me the best version of "me."

1. He's really really ridiculously good-looking . (Thanks, Zoolander.)

I'd love to properly credit the photos. I think most of the wedding photos are by Laura Click, but I think one might be from our friend Robert. And there's a lot of self-portraits. And photos taken by random nice people walking by. So thanks, everyone!

Thankful for Leaves.

2011-11-20T16:34:00.004-05:00

Today, we took a walk at one of our favorite parks. One trail was covered in leaves.

("Mommy, I have a new favorite place!")

(Examining the leaf.)

("I must find the perfect leaf.")

("I found it! The perfect leaf!")

Ellie thought the leaves were the greatest thing ever. She examined them, she crunched them, and she laughed. A lot. I love when simple things bring great joy, and trust me, the leaves brought joy. We could have stayed all day. As Ellie gets older, I love seeing her personality develop, and I love watching her smile and laugh.

(Giggles.)

("Hey Daddy, I'm gonna eat a leaf.")

("Amazing! There's another leaf!")

(Scene from our walk.)

Sweet little girl loves the fall foliage. She loves it so much that she even holds onto bits when her parents insist that she can't eat leaves.

I hope you are all preparing for a wonderful Thanksgiving weekend with friends and family.

PS. Linked up at And Then She Snapped and Rub Some Dirt On I t .

Ellie's Turn.

2011-11-18T15:49:00.001-05:00

Dear Mommy's Blogger-Reader-People,

It's Ellie again. I haven't stolen Mommy's blog in awhile, and with all this thankfulness and Thanksgiving stuff coming up, I have a lot to share. Mommy writes letters to me, but today, I wanted to write a letter to you. (I'm dictating to Mommy, because she says I spit up on the keyboard sometimes.)

(This is me, eating lunch. I tried to hug Mommy, but she didn't hug me back.)

I'm pretty thankful for all you bloggy-readers. You say nice things about how cute I am, even when I do things like wake up really early. So thank you, and keep telling Mommy I'm cute. This will be extra-important as I become more mobile and I can cause some trouble and use my cute factor to get out of it.

I'm also thankful for my toys. Mommy talked yesterday about my loud piano. I also love my dog Violet. She is purple and she sings songs. My favorite song goes like this: "I'd like a DUCK please. It's my favorite animal. I'd like it to be PINK, please. It's my favorite color. I'd like it to eat PEARS, please. It's my favorite food. And I'll call it ELLIE, just like you." Isn't that an amazing song? My dog knows all of my favorites and my name.

Pears are another reason I am thankful. They're amazing. I like them with broccoli and peas. Whoever invented those little packets with the good flavors all together is brilliant. My parents don't seem to like broccoli, pears and peas together, but that's okay. I still like my parents, because they buy me broccoli, pears and peas, and they don't make me share.

(And now you know why I wear pigtails.)

Technology is a good reason to be thankful, too. My parents got iphones, and they are fun to attack. My mom wants me to practice crawling after toys. I want to practice crawling after iphones, cameras, and anything else expensive. Computers are good, too, because they have tasty corners. I'm thankful that sometimes, when Mommy thinks I'm falling asleep, I can sneak attack her computer. I like the button that says "Delete."

I'm thankful for the people who come over and teach me fun stuff like standing and crawling and talking and eating and playing. Sometimes they make me tired, so I cry and lay down on the floor, but I really like them. (But I do NOT like using my arms. I'm going to skip to walking, okay? Because crawling uses arms. I hope you're reading this Ms. Megan. Walking is good. Crawling is hard!)

Oh, and I'm thankful for the doctors that fixed my heart. I used to be a really good sleeper, but now, I'm a really good play-all-day-with-no-napper! I love all this energy, and I like to share my energy with my parents at 4:30 am. They say, "Shhh, Ellie, go to sleep." And then I say, "No, let's go eat and play and start an amazing day and sit and stand!" Since we live in a townhouse and have neighbors, I usually win. I guess I'm also thankful for our house.

(I'm thankful for swings.)

We've been busy making preparations for Thanksgiving and Christmas. Mommy listens to Christmas carols when Daddy isn't home. She told me not to tell before Thanksgiving, but I'm telling all of you, because I decided that I really like Christmas songs. My favorite is "Baby, It's Cold Outside." Because I'm a baby. And sometimes, it's cold outside.

Happy Friday, everyone! What are your plans for Thanksgiving? Mommy says I can eat some potatoes and some turkey. She also says I will get to meet my great aunts. I guess they're pretty awesome, if they are "great."

Love, Ellie

PS. Since it's Friday, Mommy wanted to share her phone photos. I think the pictures of me are the best, but Mommy thinks that the reserved parking for Jesus is funnier. She's also pretty stoked about the new font she found on Pintrest. I said, "Mommy, no one cares about fonts." She ignored me, though. Also, Mommy says this is a good blog to follow. She says if you want Down syndrome resources, this blog is going to bring together all the other blogs. I like it, because there's pictures of me.

Thankful for Growth.

2011-11-17T10:30:00.000-05:00

There was a time that six children's books were required under Ellie's feet for her to reach her piano. Now, provided her weight is shifted entirely to one side, baby girl can tickle the ivories (er, green/blue/yellow/purple plastic) with her toes, one foot at a time.

(At least one foot can reach.)

She's huge. Aunt Danielle, Ellie says thank you so much for her piano. She was a little suspicious when she had to balance on a pile of books, but now, it's the greatest thing ever. Ellie's mommy, on the other hand, isn't sure whether to thank her cousin for hours of fun, or threaten to record the piano song as a torture device for Aunt Danielle as a Christmas "gift." (I love you, Danielle!)

We're also thankful for speech therapy, which started yesterday. Ellie rocked the straw cup. (Huge thanks to Eli's mom, Lisa, who suggested a little lemon in the water to convince Ellie to drink it. Ellie is a classy baby, so the spritz of lemon did the trick!) Per her therapist, we also covered her little tray in a puree, and let her go to town.

("Mommy, my spoon is stuck in a sea of pumpkin!")

("Can I eat like this for every meal?")

And one last bit of thanks for today. A local couple is adopting sweet Charlotte. There are so many great adoption stories through Reece's Rainbow, but this one melted my heart, since Ellie and Charlotte will be able to play together once Charlotte comes home. They're still raising funds to get Charlotte home for good, so make sure you check out their blog.

Thankful for Standing.

2011-11-16T18:37:00.001-05:00

I just had to share this photo of Ellie from very early this morning.

She's not pulling herself up yet (that's going to be awhile), but wow, she is happy when she stands up! Her balance and leg strength are improving. Now if only we could get those arms working on the army crawl...

Thankful for Conversations.

2011-11-15T20:14:00.000-05:00

Clearly, Ellie has some things to say.

I'm thankful that Ellie can provide humor, even at 5:30 am, which in when this video was taken.