Trick or Treat

I'm not saying Ansley thought she was Da Bomb BUT.....

31 for 21 Day 31

I Hope You Dance

Another funny story:
I bring Sawyer out of the bathroom with his cow-self. He runs around saying (rather loudly),
"Moo, Moo, MOOOOOOO" (ala Click Clack Moo, Cows That Type) He does this several times, talking over the teacher and everyone else. Now, to be fair the other kids were equally excited about their costumes and all were talking over the teacher. So, he's running around the room, mooing. Every so often, he stops, grabs his tail, and says, "nice tail".
Here are a few of my favorite costumes:
I hope a month of hearing about Sawyer will open your hearts and minds to those with 'Special Needs'. To be honest, I think it's the ones without Down Syndrome who are the ones with 'Special Needs'. Truly, I think Sawyer has it right. He loves without question. He laughs with ease. He doesn't judge by outward appearance. He sees past that and truly sees what is on the inside. People always say "don't judge a book by its cover" but they don't mean it. Sawyer gets it. He sees what God tells us to see. It's an awesome gift to be able to live like that. We should all be so blessed.

31 for 21 Day 30 A BIG Deal

Kindergarten Parade

Sawyer's Class

This is a BIG DEAL
Sawyer enjoying being the center of attention.
Funny story
I headed to Sawyer's class early today.
I wanted to help Sawyer get dressed for the parade.
First chance I got,
I asked his teachers about Daniel.
I wanted to meet Daniel.
That is all Sawyer talks about.
Daniel.

They told me
Daniel is in 3rd grade.
Daniel and Sawyer are BFFs.
The teachers
could not say enough about their friendship.
They wait for each other on the playground
Then happily go off and play together.
Daniel just happens to have 47 chromosomes.

So I figured, dangit, I won't get to meet Daniel
since he is in 3rd grade.
I mean what are the chances in a school with over 900 kids.

I head outside to watch the parade.
I step out into the lane to get a picture of the crowd.
As I do, I step on someone.
I look down to apologize.
I notice a little guy with striking Down Syndrome features.
I bend down and kiss his finger that I had stepped on.
I ask him if his name is Daniel.

He smiles and says "Yes".
I say, "I'm Sawyer's Mom"
IMMEDIATELY
He reaches up and hugs me.
I turn him around and point to Randy
and tell him "That's Sawyer's Dad"

He motions for Randy to come closer.
Randy does.
Then Daniel hugs Randy.

When we got ready to leave,
both Randy and I got hugs from Daniel.

It's pretty special to be Sawyer's Mom.

31 for 21 Day 29

Just 'cause

The socks were there to keep him from grabbing those tubes and yanking them out.
Tomorrow should have pics of Sawyer's Kindergarten Halloween Parade.
Stay tuned!

31 for 21 Day 28

Thankful Thursday
(it is Thursday, isn't it?)

How could I not be the happiest Mom on the face of the earth? Look at those faces. (They have not morphed into teenagers yet)

Of course, there is one big guy half way across the globe that I wish was in this picture. Hope you are doing well sweet Tamirat!

31 for 21 Day 27 (In which we celebrate)

Happy No. 6 Big Boy

You make us proud each and every day!
You make us happy each and every day!
You make us work each and every day!

Such a blessing!

31 for 21 Day 26 (I SWEAR He knows his letters)

Here, you'll see Sawyer struggles with focus. One reason for this is he had been working with me for about 30 minutes. That's way too much for him at one time.

You'll also see that he can and does recognize lower case letters. He's been doing this for over a year and yet each teacher that 'tests' him for this says he does not demonstrate knowledge of his lower case letters. Frustrating, no?

31 for 21 Day 25 (Learning to Read)

Reading and Down Syndrome

There are lots of ideas out there about teaching children to read. To be honest, I've not researched enough to know which is best. I just know that Judson was a whole word learner (vs. Phonetically breaking it down by sounds) and I can see that Sawyer learns much the same way. So I tried an 'experiment'. Once or twice a day(while Sawyer is sitting on the potty which is the only way to get his undivided attention), I go over sight words with Sawyer. I started with things like family names, etc. Then I decided to go with words in a book. Not just random words but ALL of the words in a book. I picked Dick and Jane because it's repetitive and Sawyer needs repetition.

Here is a sample of him reading his book. Sorry about the quality of the video. I was trying to film and direct the whole thing while his brother and sister were in the other room making oh so much noise. (might need to turn up the volume to help you understand his speech)




Now, how much this translates to other books is yet to be determined. I will say that he can pick out these same words in other things. (books, magazines, etc) We still have to work on tracking and how much he is comprehending. It's a good start! You might have heard him say "Mommy happy". It's a big deal for him to make Mom happy. I admit I use that to my advantage.

*Disclaimer* I am not a professional teacher. I do not claim this is the way for YOU to teach your child to read. I am just showing the way we are doing it at our house. I believe that mommies and daddies know their kids best and are the best at figuring out what works. My only advice is to 'trust your gut'. We only get to work with Sawyer maybe 10-15 minutes a day because he is in school from 8-4 M-F. We have been working on this book for 2-3 weeks.

I'll post more of what we are doing at home over the next few days. You'll see how he struggles with some words and how he tries to divert attention to ANYTHING besides what is being asked.

31 for 21 Day 24

Imaginative Play

Goodness, Sawyer is the best at this. He'll find a stick(or something else that the rest of us would just overlook) and before you know it you're involved in the reenactment of a movie he's seen or story he's heard. It might be a 'sword' (usually a mop from a play set or a toy guitar or anything that might somewhat resemble a sword). He'll hand it to you and you're suddenly the opponent in a sword fight. Or perhaps you're reenacting a scene from The Apple Dumpling Gang or Swiss Family Robinson. You have to be on your toes to know which scene you're playing out. He moves quickly and with few words. A couple of favorites: The anaconda fight scene in Swiss Family Robinson and the scene in Apple Dumpling Gang when the kids get the 'drop' on the Hash Knife Gang. He also likes a scene from Babes In Toyland where the evil guy shrinks the good guys. You have to know your movies. So study up before you come visit!

Here he is showing off his Halloween costume. He wanted to be the Huntsman from Snow White. You know...the guy who takes S.W. to the forest at the Queen's order and is supposed to 'get rid' of her. He wanted Ansley to be Snow White but she has different ideas. Isn't he looking all 'growny' lately?

Getting a big boy look about him.
BTW, can you guess what Pooh's signature color is?
She also has hot pink sequined shoes to complete the ensemble.

31 for 21 Day 23 *edited*

What it looks like?

A scared Daddy. (He sucks his bottom lip when he can't 'fix' things)*edited* It should be noted that at this point, we were being told Sawyer had a different heart defect. One that would require 3 different heart surgeries just to get him to a point for a heart transplant. You can understand the stress we were under. It was not until they discovered the PAH that they ruled out the other heart defect and decided upon AV canal. Medicine is NOT an exact science.

Transporting from one hospital to another.
This was the day they transported Sawyer from the hospital of birth to the children's hospital. It was very scary for us although I'm pretty sure Sawyer did not mind.

You might notice he did not have oxygen tubes or feeding tubes. They had not fed him since he was born. They assumed he'd have surgery fairly quickly and did not want him to have food in his system. They had only given him IV fluids. As for oxygen, the typical mode of operation with heart defects is not to give them oxygen if their O2 sats are in the 80s or above. If the body never experiences the oxygen saturations near 100, it does not 'need' that. At that point, he had not been diagnosed with PAH so they were going without oxygen. He was about 5 days old at this point.

31 for 21 Day 22

How is a diagnosis of Down Syndrome confirmed?

Typically, a doctor will notice 'markers' for Down Syndrome right after birth. In our case the markers were noticed prior to birth. (nuchal fold, heart defect, shorter nose) Since we did not have tests done prior to birth, they confirmed the diagnosis after birth. They use a test called a Karyotype.

In Sawyer's case, they drew blood. They tested 6 cells that all mapped out with the extra chromosome. Since 6 cells all showed triplicated 21st chromosome, he was diagnosed with Trisomy 21. As I said before 95% of all Down Syndrome diagnosis are Trisomy 21 so this was not a surprise. The only surprise is this might be the first and only time Sawyer has fallen into the 'norm'.

Side note:
I've read several blogs whose diagnosis has changed from their original diagnosis. One person had the T21 diagnosis. Then when she was diagnosed with Leukemia, they biopsied her bone marrow and did another karyotype. They then found out that her bone marrow did NOT have T21. Weird, eh? On another blog, the child had been adopted and had the diagnosis of Down Syndrome. When they got home and did another Karyotype, (by swabbing the cells in the cheek) she was said to have only 2 (21st) chromosomes. Finally, after many tests they took cells from behind the ear. There they found triplicated chromosomes. All that to say, even doctors get it wrong every once in a while.

What does a karyotype look like?

Sawyer's Designer Genes

31 for 21 Day 21

Mobility

With that extra copy of the 21st chromosome, comes low muscle tone. With that low muscle tone, sometimes you wonder when they will go from this:


To this:

And then they get there and you wonder, why you ever worried.

Happy 21st of October!
Be sure to click on the Emma's Hope button on the right.
Exciting times!

31 for 21 Day 20

Here's what I see....

A very independent young man climbing the stairs without using the handrail!(his latest "I do it MYSELF!")

Two silly kids showing off their Halloween socks. (Every picture I took of Ansley on this day had her head tilted to the right. Don't ask me why)

31 for 21 Day 19

Some more sights from the Botanical Garden


The average person might look at these next 2 pictures
and think:
"Nice Water Features"

Not Sawyer, he looks and says:
"Swimming!"

31 for 21 Day 18

Family Time

We took a trip to the Botanical Garden this weekend. The weather was fabulous and the kids needed to get out and enjoy it.

This time around, we let Sawyer have some freedom. He is going to be 6 in just a few days, so he does need to learn to stay with us and not wonder, etc. So, no stroller and no 'leash'. He did pretty well for the most part. (ie, reminding him if he did not stay with Daddy he could not watch Polar Express when he got home) Towards the end, his patience was wearing thin and he was tired. (Meaning Dad had to carry him part of the way but not much)

More tomorrow....

31 for 21 Day 17

Open Heart Surgery

Better than 50% of children with Down Syndrome,
have congenital heart defects. Sawyer had an AV Canal (very typical)
and his Mitral (I think, could have been tricuspid) valve was leaky.
The VSD closed on it's own but the ASD and valve had to be repaired.
This can usually be done when the baby is weeks/months old.
With Sawyer, he had the added issue of PAH.
He's the 1 in a million case.

Notice the "I Love You" sign Judson is giving him.

Did you know he was less grumpy after this surgery
than he was with new teeth coming in?
At this point, he was not on anything more than Tylenol.
He was a ROYAL PAIN when his teeth came in
but didn't really show any grumpiness
with his heart surgery.
Go figure.

31 for 21 Day 16

This picture makes me smile.

Look at that tongue. Whenever he'd get hungry (ie, it was close to feeding time-which was every 3 hours via NG tube), he'd start sucking on that tongue. LOVE IT.

31 for 21 Day 15

Do you feel having Sawyer (with all his 'special' needs) takes away time from your other children?

Absolutely, NOT!
Each of our children has their own 'special' needs.
Each of our children has their own unique gifts.
Each of our children get special Mommy/Daddy time.
Each helps the others to become the best person they can be.
I think that is pretty darn awesome!
Even more awesome?
I get to witness it each and every day.

Just a little Extra

http://www.reecesrainbow.com/atriskwaiting.html

Take a good look at that list.
Yesterday, there was a little girl named AnneMarie on that list.
Today, she is not.
Not because someone decided they needed a little girl in their family
and committed to adopting her.

Nope.

AnneMarie is no longer available for adoption.
You see.
AnneMarie died.

She died waiting for someone to love her
as their very own little girl.

She was in the orphanage likely because she had Down Syndrome.

Today, she is in Heaven.
In Heaven, she is seen as perfect.
In Heaven, God celebrates her.

31 for 21 Day 14

How Judson helped

Sawyer spent quite a bit of time in this saucer.
We were trying to help him get his legs stronger.
Judson spent a lot of time entertaining Sawyer.

You can see by the picture
They had a great time together

One day, I was not in the den with them
when Judson came in and said something like
"Mom, Sawyer wants Cheerios"

I said,
Judson we don't give Sawyer
Cheerios because he might get choked.
(We were still working on how his tongue moved
food around in his mouth)

Judson said
"No he won't Mom"
He ate my Cheerios
And didn't get choked.

I scrambled in there
to find Sawyer happily munching
on Cheerios.

I think it was at that point
I finally realized Sawyer was going to be okay.