Sunday, December 25, 2011

Merry Christmas

The kids at the Down Syndrome Connections Christmas Party

On the cruise ship somewhere between Mexico and Florida

Clearwater Beach, Florida on Christmas Eve

Friday, November 25, 2011

Happy Thanksgiving and an Ella video

We had a wonderful Thanksgiving today despite both of my kiddos being sick. Hunter was diagnosed on Tuesday with pneumonia and today Ella is not feeling well at all, has a little bit of a cough and by the end of the night had pretty much no voice. We headed up to my mom's house and ate a lot of really delicious food, played, colored, ate pie, watched Charlie Brown Thanksgiving, danced, an played some more! I have oh so very much to be thankful for...I am very blessed!!!

My babies.
The table, looked so good!
The kids made the place cards, Ella made Nana's.

My favorite of course, mine, Hunter made it : )

My view at Thanksgiving....I am a lucky girl!

Ella chowing down, ahhhh the crazy hair!

My Hunter Bug, I so love this sweet boy!

After dinner we did some coloring. Here is one of Hunter's really cracked us all up, the kid has a great sense of humor. I'm thinking I will frame this one and put it up every Christmas!
Ella eating some pie! Pie makes a sick girl feel better....even if its only temporary!

My son however doesn't like pie, at least not pumpkin and not apple, and he hates Cool Whip/whipcream so he had ice cream. Crazy kid.

Here is a video of Ella before we left to go to my mom's. I wanted to record her talking about "fat turkey" as that is all we have heard about for the last 2 weeks. Her teachers read a story at school that had something to do with fat turkeys and she has been obsessed ever since. I just love the way she says it and never want to forget the year of "fat turkey!" Ignore her voice quality as she was in the process of losing her voice!

All in all we had a fantastic Thanksgiving and we are so incredibly blessed!!!

Now hopefully we can get in at the doctors tomorrow for poor Ella, who is now breathing quite loudly.

Friday, November 11, 2011

Ella lost her first tooth

Last night my baby lost her first tooth. I am depressed. Losing baby teeth is a sure sign that a child is no longer a baby. Sigh. I don't like it. Not one bit. We've known for about a week that she had a wiggly tooth, I noticed that one of her teeth looked crooked and checked it and found it to be quite wiggly. Hunter didn't lose his first tooth until he was 6 (much to his dismay,) and because Ella's teeth came in late I just figured we had a couple of years to go. Ella on the other hand was quite excited by it all! She put her tooth in a little zip lock bag and we told her all about the tooth fairy, she did NOT want the tooth fairy to take her tooth, LOL! When she woke up this morning she was very happy to have 5 dollars and didn't care about her tooth! She has told me about 100 times today about her "lost tooth." So cute! I keep getting teary everytime she talks about it, not sure if it's because she is officially a big girl now or because I know that some MAJOR orthodontic work is in our near future.....

Monday, October 31, 2011

Day 31 - Happy Halloween

Phew!! I made it...did all 31 days of posting. Hooray!! The kids had a blast trick or treating tonight! Hunter was a SWAT officer AGAIN and Ella was Rapunzel who hated her long hair (the wig.) The weather wasn't too bad and the kids got lots of candy!!

Mad about her hair.

The neighborhood kids, Ella really not liking her wig!

So Daddy wore it instead : )

Sunday, October 30, 2011

Day 30 - 21 things about Ella

1. Ella's favorite game is Duck Duck Goose!

2. She HATES cheese!

3. She loves to draw. Her current fav is rainbows.

4. She does not like coloring books! Only plain paper.

5. Ella loves the Pinkalicious books and Max and Ruby and Biscuit and Barbie and well pretty much any book but her current favorites are No David and David Goes to School, perhaps she sympathizes with him!

6. Her favorite show is Max and Ruby with Cailou coming in a close second

7. Ella has some really great friends.

8. She loves to be funny. She tries telling knock knock jokes like this one
E: knock knock whose there?
M: um..whose there?
E: Poop!!! with hysterical laughter following

9. She attempts to sing nearly every song on the radio (even ones she doesn't know), typically a word or two behind and then when it's over she declares " I DID IT!"

10. If you tell her no she gets a pitiful face and says "you hurt my feelings."

11. She had declared pacifiers are for babies and now sucks her thumb pretty exclusively (much to my dismay.)

12. She hates her pillow and will throw it on the floor as soon as I walk out of the room.

13. Ella's favorite meal is chicken nuggets, fries and a chocolate milk and she asks for that nearly everyday.

14. Ella is doing really good at her princess ballet class (though it was a rough start) and has her first recital in December where they will be doing a marionette dance. It's super cute

15. She is also in Girl Scouts now...she is a Daisy.

16. Ella will not wear socks in our house. No matter how cold it is she takes them right off.

17. She has really great conversations with her babies, even when she is supposed to be sleeping and really takes care of them like a little mommy, it's so cute. The little ones are all named Baby Lexi and the big ones are Baby Alice!

18. Though she is quite girly, preferring to wear a tutu over anything else and carrying her purse around, two of her favorite things to play with are cars and legos especially if that is what Hunter is doing!

19. The child drinks non-stop at home. Downs cup after cup of juice (which is a very very tiny amount of juice and a whole lot of water.) This is a sign of Graves' Disease but she's been this way for a long time so who knows.

20. Ella loves to love BUT only if she initiates it!

21. I am the luckiest mom ever. Oh wait that's about me. Ella is the most amazing daughter a mom could ever have : )

Last night we went to our friends house and decorated Halloween cupcakes and made candy necklaces. It was fun!
She stole some of Juan's marshmellows....she thought she was quite funny!

Getting a little OT in, stringing candy onto her necklace.


Saturday, October 29, 2011

Day 29 - Conference Part 4

One of the fun things to do at the conference is to attend the dances, there were two this year. They are just so fun to watch. The dances are a BIG deal to the teenagers and young adults with Down syndrome, and boy to they have some great moves! It is quite entertaining. Unfortunately we didn't get to spend a lot of time in the room where the dance was because it was too loud for Ella. I mean it was really LOUD! Ella does not like loud noises but typically adjusts to it pretty quickly but that was just not happening there. She mostly liked to dance with Nana in the hallway, where we could still clearly hear the music (and where the snacks were which might be the real reason Ella was out there LOL.) She did get brave from time to time and venture back into the room, but wanted to be held. We still had a great time anyway!

Walking to the dance, giving her baby a piggyride

Another awesome thing about the conference is everyone is so friendly. Obviously people that are attending either have Ds themselves or are family/friends with someone with Ds, so everyone is "safe." Ella befriended several people while we were there. This lady below fell in love with Ella during the opening ceremony and came and grabbed her and took her into the conga line.
Nana and Ella dancing in the hall

Dancing with Ella is quite a workout. You just never know when she is going to throw herself backwords and assume that you will catch her. LOL!

Yep! I know I am cute! Everyone keeps telling me so : )

Friday, October 28, 2011

Day 28 - Proud

I am a proud mommy. Really proud. I have two wonderful children. I know this. My kids are smart and funny and sweet (most of the time) and when people tell me these things my heart swells. Today I went to Hunter's 2nd grade class' Halloween party. The kids were making spider cookies and I was squatting in front of Hunter's desk.

This lady comes in and says hi to Hunter, then asks him if I am his mom? Hunter replies "Yep!" with a big grin on his face. The lady tells me my son is amazing, he really is the sweetest most kind hearted kid.

"Aww thanks," I reply.

She tells me she is Mrs (I forget her name.) the special ed teacher that works with "K" and that Hunter is so sweet to him and truly a good friend and helper. "K" LOVES Hunter." K is a little guy in Hunter's class that has CP.

Instant tears. She then says "I know he has a little sister with Down syndrome, he likes to tell me all about her. But, I think he'd be this compassionate even if he didn't."

Seriously? Way to make a mommy cry at a party.

She asked Hunter to go sit by his buddy for a picture for K. Hunter went right over and straighted up K's eagle head. It was just such a sweet moment for me.
With his yummy spider cookie that he made

Another cute moment was that this little guy kept signing something to me and I didn't know what he was saying (my signing vocabulary was just enough to understand a 2 year old) Hunter sighs and says "MOM he is telling you that he is an eagle. K loves eagles!" Which made "K" smile big and shake his head yes! I don't know what was going on in this pic but it made me laugh!

I just love this boy!!!!

I think that if I were a parent of only "typical" kids this wouldn't be so tear inducing to me. I would just think that it was cool that Hunter had friends of all abilities. But I think because I have Ella I realize that not every kid will be friends with her, not every one will just accept her as she is. Ella has so far had a best buddy in each of her preschool classes and I think she has been generally accepted just because preschoolers don't really pay that much attention to ability. I just hope that she has a friend like Hunter when she is in 2nd grade!!!

Thursday, October 27, 2011

Day 27 - Times Square

It's late so just a quick easy post. This year a picture of Ella that I submitted was picked to be included in a video shown in Times Square during the New York City Buddy Walk. This is Ella's 3rd time, out of 4 submissions, to be included in the video. They sent a link yesterday with pictures taken of the pictures during the video.

Here is a little generic fill in the blank statement that they sent out explaining it too!

NEW YORK, NY - Ella Grace Bode of Spokane,WA, will appear in lights on Broadway on Saturday, September 24, as part of the National Down Syndrome Society (NDSS) video presentation, which promotes the value, acceptance and inclusion of people with Down syndrome.

The photo of Ella, who has Down syndrome, was selected from over 1,200 entries in the NDSS worldwide call for photos. Over 200 photographs will appear in the video, which will be shown on the larger-than-life MTV plasma screen, located in the heart of Times Square.

Ella is pictured riding the therapy horse, Sugar.

The Times Square video presentation kicks off Down Syndrome Awareness Month in October. The video presentation will be followed by the 17th Annual New York City Buddy Walk® in Central Park. This year, Buddy Walk events will be held in more than 250 cities across the country, as well as select international locations, in and around October. For information about the NDSS Buddy Walk Program, visit or call 800-221-4602.

About NDSS

The National Down Syndrome Society is a nonprofit organization with more than 350 affiliates nationwide representing over 400,000 Americans who have Down syndrome. The mission of NDSS is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome. NDSS envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities. For more information visit

And there is my baby girl : )

Wednesday, October 26, 2011

Day 26 - Fieldtrip

I had the pleasure??? of going on a field trip to Hidden Acres Farm today with 28 preschoolers. It was freezing cold but at least it wasn't raining! Ella was all out of sorts, I'm thinking she might have a sinus infection, but we still managed to have some fun!

Here she is this morning before we left the house.
Here we are on the bus. She was so excited to ride the bus.....because we don't do buses with Ella in general. She did pretty good though I had to remind her several time to sit down.
My beautiful flower.

The hay maze. Ella was NOT a fan and stood at the entrance refusing to move, even though her class was way ahead of us. Me being the nice mommy that I am pushed her in, only for her to start bawling. So, of course I had to pick her up and carry her until I couldn't possibly carry her anymore (because I was also carrying a large bag with extra clothes, coats, and diapers and wipes because we are in the middle of a Miralax clean out and no one wants to be stuck on a farm with poop all over themselves.) She decided that it wasn't too bad once we were in the middle of it.

Then we came to this big pile of hay bales. She thought it looked pretty cool and climbed right on up with the other kids....

and then freaked when it was time to come down because she had to use her hands and touch the hay which she was NOT a fan of. So she froze right there

and I had to climb up and get her.

After that we explored some tee-pees. But she refused to go in them once she peeked inside to find several shrieking/yelling preschoolers inside.

Then we visited some sheep and a pig. You can see how she felt about that.

We then went to pick a pumpkin. She freaked out there because the vines or weeds or whatever they were were nearly as tall as her and a couple touched her so she then refused to walk again, which meant I had to carry her, which meant no pictures. Once we found a good pumpkin (most were rotten) I set her down and told her to pick it up. Apparently she had been sucking her thumb so it was wet, well she put her hand in the dirt and it all turned to mud on her thumb which made her cry even more. I was really tempted to leave the dirt on so that she wouldn't suck on it, ha ha!

Then we went on to pick apples. This she enjoyed!

After the apples we headed over to go on a hay ride, which requires you to sit on....HAY! That was so not happening, but she was fine sitting on my lap. So no pictures of that either.

Finally Ella's favorite part of the day.....lunch!

I really think she must not be feeling very good because this was so unlike her. She is currently on hour 2 of her nap. Poor baby.

PS - I still have some more to write about the Conference!