Friday, March 21, 2014

World Down Syndrome Day 2014: Celebrating Normal

Cookies by my awesome friend, Jill!  Check her out at Cookie Cutter Creations on Facebook!

Hello World! 

It's been quite a while since we've written!  We've been busily posting updates to family and friends via Facebook while in the meantime, our little blog has been left neglected and forlorn.  Much has happened in the last year: Kaetlyn turned three and started preschool, riding the bus each day; Grace turned two and somehow has developed the vocabulary and language skills of a 5-year old; Kaetlyn is picking up all kinds of language from her little sister, but is sure to remind her who is boss!  So, why, you ask, after a year did we pick up and write again?  Well, firstly with the hopes we might more frequently do so...and secondly, and more importantly, because it is World Down Syndrome Day 2014...3.21.14...and that is reason to celebrate and update our long-forgotten blog.

World Down Syndrome Day is meant to raise awareness and acceptance for all those who sport that little extra 21st chromosome. That awareness is not just about folks who have DS, but also those all around them. So, today, we write about and celebrate our simple, ordinary, every-day life that unexpectedly was blessed by a little something extra!

Hello World!

4 years ago, while I anxiously awaited the arrival of my precious Kaet, I didn't know what life would hold.  I was afraid of what trials and struggles my baby would have, but oh!  I loved her fiercely.  3 years ago as I pondered the wonder of the second life growing inside me, I wondered how would we make it work?  Two children not walking, not talking, one with special needs, both parents working, and three aging dogs.  I was once again afraid.  How would we define "normal"?
Gracie swingin'
Fast forward to today....  Normal?!  What is normal?   Our days start by running around (yes, literally RUNNING...they ARE 2 & 3!) in the morning to get dressed, hair combed, teeth brushed, dogs fed, and ready to get out the door. There can be tears over footwear (Grace loves rain boots, which Mommy doesn't always find appropriate), or tears over hair (Kaetlyn is in a "no brush" phase), and the ever-present sound of some show - Sophia The First, Daniel Tiger, or Doc McStuffins - in the background.  Then the rush to get in the car amongst choruses of "No I do it myself!" as little girls clamber into their car seats and attempt to don their 5-point harnesses.  Arrival at daycare is heralded with "Kaet's room first!" Or "Grace's room first!" depending on whose day it is to get to their room in advance of the other. Girls settled in, ready to learn or attend dance class or singing class, Mommies and Daddies at work, we eagerly anticipate day's end to spend more time together.
Kaetlyn practices her letter "L" at daycare

Gracie the Dancing Queen

Thursdays are big days - we get to see "Speech Sarah" and Grace is adamant lately that she gets to "play" with Speech Sarah while Kaet must sit with Mommy in the waiting room.  While that has yet to happen, it makes Kaet that much more interested in "playing" with Speech Sarah.  Oftentimes, Daddy meets us in the town where we see Speech Sarah and we get to go out to a restaurant and have someone else cook for us! 

Evenings are spent over family dinners at least 4 days a week.  Important topics such as favorite color, favorite shape, favorite animal, favorite fruit or vegetable, and inevitably favorite ear (Right?  Left?) are discussed. Then playtime and sometimes yoga with Mom or pretend to be an animal (Grace likes to hop like a frog; Kaet to roll like a bug!), somersault practice, and often tea parties are in the mix.  There's frequently singing ("Frozen" songs are high on the list these days! :))  Some nights it's bath night; every night has story time.  There's always the enviable task of telling girls to stay in their beds and go to sleep (though admittedly, this seems to be getting better!).  Lights out, day is done, repeat tomorrow!

Dress Up and GO!
Weekends are spent going to parks, attending birthday parties or the Tiny Tots symphony, running errands, playing dress up, helping with laundry, and myriad other "normal" tasks. It's ALL normal. Every bit of it.
Park Fun

Each day starts with a hug and kiss and ends with a hug and kiss. Some days are tougher than others and we're reminded that this is a journey. Some days are just downright joyful. The best thing about all of it is the friendship that exists between Kaetlyn and Grace. That we get to be a part of an amazing community and get to experience the ups and downs of having a child with Down Syndrome is, for us, simply normal.   And we would not have it any other way!
Happy world Down Syndrome Day everyone!  Here's to the beauty of life and the acceptance of everyone and, yes, to normal, in whatever form it may bring you.  :)

Friday, February 15, 2013

January Tidings - 2013

Finally!  We are out of January and into February!  What a LOOOOOONG month January was!

We struggled with health the whole of the month, with first Kaetlyn being sick and then Grace and then back to Kaet.  It seems we like to share our germs...and we like to share them with Mommy who got to ride the sick train with us as well.  Despite the germs and coughs, snot and fevers, we made it through with lots of fun things in between...and Mommy and Daddy got to actually have some REAL Mommy/Daddy time together for the first time in years!

We started the month of January with lots of coughs and sniffles and then Kaet got really really sick within a matter of 24 hours.  We left the house for school, Mommy dropped off Gracie, and then Kaet was whisked away to the ER for IV fluids.  The flu is NO FUN.  NO FUN.  As a two-year old, experiencing getting IV fluids can be likened to giving a cat a full bottle of pills...the poor ER staff didn't like it any more than Kaety did!  
Just after getting her IV...

Sleeping with IV running...poor kiddo

Finally back home, Mommy and Daddy kept trying to get Kaety to drink, drink, drink to keep her fluid level up.  Kaety wasn't interested, so creativity kicked in and Kaety got to drink water with a straw from a fancy glass!  OOOOOH she loved it.  OOOOOH Gracie was jealous!
OOH!  What's this?  A big girl glass? A straw?!  Don't mind if I do!

SUCCESS! !! :)

As the week went on, revelations were made about Kaety's preference in fluid ingestion:  Chicken Noodle Soup it is!
Look at me eating with a spoon!!!

Maybe not the cleanest meal, but have you ever seen a more satisfied face?!

Finally, out the other side, we've been trading germs, but seem to be heading in an upward trend!

We had our friend, Ava, come over to play as we started to get better.  Her Mommy and Daddy took her big sister, Madison, to a movie, so we got to have Ava time.  We had the best time playing and hanging out!
Kaety and Ava playing piano

What's up BFF?  Have a snack with me!?

Art time!

We showed her our new favorite show... "Blues Clues" ... which we like to watch side-by-side in our Aunt Rachel chairs.  We ask for it by name, both signing the "jazzhands" of "Blues Clues" to get Mommy or Daddy to put it on the TV.
"You find another paw print...that's the first put it in your notebook 'cuz they're Blues Clues!  Blues Clues!"

Then, joy of joys, GRANDMA WARD ARRIVED!  Grandma came and spent two glorious weeks with us to help care for us during our ailments and offer some much-needed babysitting services so Mommy and Daddy could go out on the town (and away from town!)  Grandma did lots of reading to us and playing with us.  We love her so much.  She even garnered a new nickname...Gracie has taken to calling her "Bilbo" that's her new Gramma name! :)
Bilbo reading to Gracie

Mischievous Kaet...

While Grandma watched us (with lots of support from Aunt Rachel O), Mommy and Daddy PLAYED!  They went out on the town here in Seattle for Mommy's office holiday party...
Out on the town, all gussied up!

Guess where we were...?

Mom's & Dad's just wanna have fun....dressing up!?!?

And then they did the unthinkable...they LEFT TOWN FOR 4 WHOLE DAYS AND WENT TO HAWAII WITHOUT US!  Did they have fun?  You look at the pictures and tell us...

Yeah...that's what I thought...they had fun without us!!!

Finally, Football.  OH, how we love football in our house.  Mommy, a Redskins fan first and a Seattle Seahawks fan second, got us all kinds of good garb for the playoff games.  Sadly, neither team won their way into the Superbowl, but boy did we look good and show lots of support those two weekends...
Hawks vs. Skins...let's go!

We sure are happy about it!

I mean, REALLY happy!

What a difference a weekend makes...

Our "box seats" for the show!

So, what else has gone on this month?  LOTS!  We love to play and we have gotten very involved in lots of antics in school.  Also, the vocabulary train has RACKED and STACKED this month for both of us...just look at how we've grown!

At school, I got to play in "fake snow" and show off my "GI Joe" dress-up and even got my baby doll to participate in it!  I'm starting to really love to play dress up and explore lots of new things!  

GI Kaet

Hee hee

Baby gettin' in on the dress up!


This month, I've ROCKED the language center of my brain.  Ms. Colleen and Ms. Erin are totally over the moon with my progress.  New things I've started saying this month include:
"I did it!"
More (lots and lots of this!)
Thank you/ No Thank you  (lots and lots of these too!)
Chicken / Doodle Doo (for rooster)
Bus You (Bless You)
Gamma (Grandma)
Nite Nite
iPad (!!!)
All Gone

And the big one...

Mama -- you have NO IDEA how cool this was for my Mommy.  She walked into my room after being gone for 4 days and I sat up in bed and said, "Hi Mama" like I had been saying it EVERY DAY of my life.  She cried.  She's a sap :)

I've also gotten into dress-up at school.  I got to play dress up as if I was a vet and I took care of a moose!

I also showed off my skills with hats and dress up clothes in the room with all my friends.  My class is ALL girls right now, so there is a LOT of dress up, baby dolls, and purse carrying going on!
Farmer Grace

Telling secrets in class!

I love to read.  LOVE. TO. READ.  Mrs. Linda can't believe how often I'm sitting with a book!

I also love Icies...I have to have one in my hand at ALL times.  I've even pilfered them from school...Mommy and Daddy have returned them, but I LOVE ICIES!  (Daddy says Brother Brian was like this with boo boo's - but he needed band aids.  I just want an ALL TIMES!)
You can't see it, but there is an icy behind my hand.  I LOVE THEM!
Also, I love my new teacher, Ms. Junalyn.  She's my snuggle-up-against pal...she rocks!
Me and Miss Junalyn
Language for me has been nutso this month too.  Mommy and Daddy can't believe what a parrot I've become.  New words this month for me:

"I got"  (SO FUNNY!)
"I got you Mama"  (even funnier!)
"I your baby Mama"  (awwww)
Thank You / No Thank You (alllll the time!)
Bless You
"Oh Please!" (when I really really want something!)
Nite nite
Away (throwing my own diaper away)
Back (I love to have my back scratched when my diaper is getting changed!)

And, of course, the best one...
"Bilbo" for Grandma. Bilbo is NEVER going to live this name down!

The biggest thing this month that Mommy and Daddy see is how much we (Kaety and Gracie) love each other.  In the mornings, we go looking for each other in each others' rooms.  We MUST hug each other and know where the other one is.  We play REALLY well together (most of the time) and we look out for each other.  If one is crying, the other pats her back and says, "awwww".  We are pretty much a hoot.  Bring on long as we're together, we can tackle it! :)
Who doesn't love a fancy fuzzy vest?!!?

Tuesday, January 1, 2013

Happy New Year 2013!

Happy New Year!
It’s true, we have been woefully inadequate in updating our blog with all our adventures.  Life (and work!) have gotten the best of us.  Mommy has been posting our fantastic pictures to Facebook, meaning to help us update our blog, but, well…you see where that’s gone the last few months.  After multiple requests in the past few weeks, Mommy finally decided it was time!

We have been busy, busy, busy growing, learning and in general, causing mischief.  To catch up on the last few months, we’ve included our favorite highlights below.

We had our pictures taken at school.  Our pictures really showcase our personalities around people with whom we are not that familiar…guess which of us has severe stranger danger??

Sunny Kaet:

Skeptical Gracie:

(And we tried for a retake - same result!)

But we are cute together!!!

October was a busy month!  We did the 2013 Buddy Walk at Seattle Center at the beginning of the month.  It was a LOT of fun and an absolutely GORGEOUS day!  Thanks to all those who contributed on our behalf, we raised over $1000 for the DS community!

Our favorite person, our Aunt Rachel, came with us that day as well ... you can see she had a lot of fun! 

Later that month, we went pumpkin picking with Sissy and her boyfriend, Nico and had a fantastic time.  What an amazingly beautiful day and gorgeous fall we had this year!

Pumpkin buddies

Sissy participated in the fun!

Nico, Sissy, and Kaet...with Daddy in the background!

Best Friends

Funny girl!

Sissy even carved us a pumpkin (without a template - she did this BY HAND!)…our very own Elmo!

In late October through the first week of November, we headed to Hawaii for our annual trip.  We had SO MANY family members there, what a FANTASTIC time!  Our Great Uncle Bob, Great Aunt Nancy, Olmsted Cousins, our OTHER Great Uncle Bob, and our Aunt Kristin, Uncle Ronald, and Baby Cousin Avery all came with us!  We celebrated Halloween there and got to swim, play, and have some fun in the sun!
On our way to the beach!


You lookin' at me?!

Relaxing by the Lagoon

I love my Baby Cousin Avery!!!

Kaet the Sunflower Fairy

Gracie the Butterfly Fairy

Avery the Flower Petal Fairy

Hanging out in a cabana...AWESOME!

Fancy Kaet

We love our Baby Cousin Avery...

And especially her head gear!!!

Grocery shopping upon return from Hawaii...this is just EXHAUSTING!
After we got back from Hawaii, we had a big event.  Mommy and Daddy had taken me (Kaetlyn) to the doctor to check on my hearing in August.  We found that I had some hearing loss.  We tried a protocol that was non-invasive, and after about 6 weeks, Mommy and Daddy realized it simply wasn’t working.  Mommy insisted we get seen by the ENT again and when we went back, they checked my hearing again.  The news was bad.  I had moderate to severe hearing loss, but they thought it was because there was so much fluid behind my ears.  Because, well, I’ve pretty much had a constant sinus infection since I was born!  So, we scheduled surgery to put in ear tubes and remove my adenoids.  The week we got back from Hawaii, I had the surgery.  The good drs and nurses at Seattle Children’s hospital took really good care of me.  I had some difficulty coming out of the anesthesia, but they worked with me to make it as positive an experience as possible.  When the doctor came to get Mom and Dad to take them to me after the surgery, he said, “I’m REALLY excited for you.  There was SO MUCH fluid behind her ears and her adenoids were HUGE.  I would be surprised if you don’t see an IMMEDIATE improvement.”  And it was amazing.  Suddenly, I was hearing things I never had heard.  Guess what?  I love to sing…and I sing WAY more now!  :)

Given all the activities early in the month, we stayed home for Thanksgiving, but the greatest gift of all this year was that both Sissy Meg and Brother Brian were with us for Thanksgiving!  We got to play and hang out and have a fabulous Thanksgiving.  We LOVE our older siblings!
Gracie, Brian, Kaety & Megan

Sissy reads to us

Sibling lounging

All gussied up for Thanksgiving!
Because all the Spivey kids were here, we also were able to take Family photos with ALL the kids together!  Mommy and Daddy were super happy!
Gracie and Kaety in their Christmas finery

They like each other! :)  Brian and Meg

Four Spiveys


Cutie Grace

December brought on the holiday spirit and we got to go to a concert at Benaroya Hall with our wonderful friend, Kayla.  We then went to visit Santa, who Kaetlyn found to be curious and Gracie flat out didn’t care for!  We had a lovely afternoon with our friends, though!
Kaet, Grace & Kayla

Kayla & Kaetlyn dancing

Kaetlyn & Kayla curious about Santa

Gracie's not having any of this!
We also did our very first 5K walk!  We all participated with Mommy and Daddy’s friends Ginger and Angel and Mommy’s work people in the Jingle Bell run in Seattle.  It was a lot of fun and fortunately, the rain held off, so we didn’t get wet!  We were definitely cold by the end though!

Finally, December took us on another trip back to the East Coast to visit with our Uncles Kevin and Tommy and their new son, our Baby Cousin Austin!   Grammy Chris and Grampa Ward and our fantastic Uncle Connor also came and we had a fantastic family holiday!  We read books, ran amok all over Uncle Kevinommy’s house, and in general showed them what they have to look forward to with our Baby Cousin Austin!!! J
Grandpa reading to the Princesses

Uncle Kevin and Baby Cousin Austin

Grandpa and Gracie

Uncle Connor reads to the girls

Notice a theme with Gracie and her relatives...?

Of course, no holiday trip is complete without the obligatory crud.  Kaety and Mommy came down with a nasty flu/cold from which we are still trying to recover.  But at least we got to feel icky in the presence of all those who love us and can take care of us!

Through all of the travel, fun, mayhem, and mischief, we’ve managed to grow by leaps and bounds.  A few fun things about us:

-      Now that I can hear, I am working on consonant/vowel sounds and trying to form more words.  Mommy says I’m very good with “NO!” and “OOOOH!” and “UT OH!”  Other words I’ve become proficient at include:
Frog               Dog                Daddy
Kaety             Shoe               Sock 
Sister             Cow                Mine
More              All Done          Please
Thank You      Down              Cat 
Baby             Bye Bye           Hi
Owl             Austin (my cousin’s name!)
(and FINALLY!)  Mama  

-     The progress since my surgery has been remarkable and I can now start to mimic what people are saying.  Every once in a while, I’ll throw out a phrase like “I did it!” or “My turn!” 

-      I understand far more than people give me credit for and like very much to tell my Baby Sister Grace what to do and how to behave.  I have been known to shake my finger at her and then say something like, “Shshe dadado nnnno da sha de do so”  I know what I’m saying even if others can’t quite make it out.  And quite frankly, Gracie knows what I’m saying and will usually stop whatever it is that she is doing that she shouldn’t be!

-      I haven’t stopped signing and have added another 15-20 signs in the last few months, my favorite being “music” (I love music, dancing and singing!)!  I am still helping my classmates learn signs to help me communicate better with them.  I often help Mrs. Katrina model the signs to my classmates.  I like helping others learn and am a good teacher!

-      I am learning that I DEFINITELY have opinions about things and try desperately to let them be known.  Mommy says I’m a spirited child.  Grandma says the apple doesn’t fall far from the tree!

-      I’m *learning* about sharing.  I am not too good at that yet.  Baby Sister Grace and I often find ourselves in time out for not sharing.  It’s a work in progress!

-      I love to read and am often found sitting in a chair, reading a book to my baby doll.  I help turn the pages of the books for my teachers in class, and have been known to sit down and hold the book up as if I am the teacher in class!  I did this in therapy for Ms. Erin and Ms. Colleen.  They thought I was hilarious!

-      Speaking of therapy, 2013 will bring changes to our home, as I will graduate from the Birth-to-Three program in May and start the head start program with my local school district.  Mommy is very nervous about this whole thing and I’m sure we’ll have lots more to share on that in the coming months!  I don’t know what to think, but I’m sure, since I’m the only little girl with DS in my typical daycare, and I’ve rocked that place, that I will do just fine.  (Someone may need to get my Mom a valium though to help her chill out!!!) J

-      My bestest friend is my Baby Sister Grace. I love her a lot.  I like to hug on her (sometimes a little too hard!) and kiss her and I love to hold her hand when walking into school because, well, I’m the big sister and that is what we do!

-      I am a talker.  A BIG TIME talker.  I mimic EVERYTHING that is said to me and am putting together full on phrases!  I started talking, really talking right around my first birthday.  I have LOTS of words and often try to teach them to my Big Sister Kaet.  It’s kind of nice, because we’re doing this talking thing together.  My massive vocabulary includes:
Dog              Cow               Horse
Dadda           Juice              Sister
No (one of my favorites)      Hello
Mine             More              Sheep
What’s That?  I See You!     Shoe
Sock              Milk              Bite           Please         Done          Baby
Up                Down            Away          Nite Nite     Blanket       Owl
Bye Bye         Hi                Mouse         Mama (my favorite word!)

-      I am a climber.  Oh yes.  Moreso even than Kaet and that i saying something!  If you put something in front of me, I’m going to climb on it, over it, around it, whatever it takes.  I.  DON’T.  SIT.  STILL!

-     Where Kaet is a lover and is immediately friends with EVERYONE, it takes me much more time to really trust others.  I’m very wary and often provide scowly petulant looks at people, even if Mommy says they’re ok!

-      Once I know you, though, I’m a snuggler.  I love a good snuggle while reading a book!

-      Speaking of books…I am ALL about books.  I LOVE to read and anyone who will read to me is instantly in the “you’re ok” category.  I am great about pulling ALL the books off the bookshelf and reading them.  I’m not great at putting them away yet!

-      I love to be tickled and play the “giggle game” where I run up to you and laugh in your face and then run away.

-      Blankets.  Yes, blankets.  I love them.  They are the most wonderful things in the world.  Beware, if you come to our house with a blanket, I will likely steal it.  “Binkits” are cool!

-      My bestest friend is my Big Sister Kaet.  If she’s sad, I’m sad.  If she wants to play “sit on Gracie’s head and bounce”, I think that’s wildly funny (Mommy and Daddy do not!).  I follow her every lead.  Sometimes this gets us in trouble.  Mostly, it’s a lot of fun!  It's even better when our Sissy is here!

We hope you and your family have had a WONDERFUL Holiday season and we wish you only the best in 2013.  We’re gonna ROCK this year!

Love, K&G (and our Mommy & Daddy too!) :)