Thursday, March 29, 2012

Vacation Photo Bomb and Other Updates

Kennedy is getting more and more mobile!  Pulling up, scooting, and just getting around!  She *can* crawl, but Kennedy is Kennedy and she does things the way she wants.  And she doesn't like being on her knees, so she uses her butt to get every where.  It's been 3 weeks since we saw our Early Interventionist last and she was just blown away at the advances that Kennedy has made over the past few weeks.  She's also *talking* more and more.  And I can't forget about her new found love for yelling.  She's not unhappy, but she loves to yell.  At the top of her lungs.  Sometimes in hotels, at 11pm.  Sometimes in the close confines of the car...for three hours.  And even in doctor's offices.  Kennedy makes herself known. 

Today was also a Cardiology follow up.  Kennedy rocked it!  We got another perfect report and Kennedy weighed in at a whopping 17lbs 13oz!!! 

Here are some pictures from the past week.  And I promise, you'll start seeing more updates from me! 

Sleeping on Aunt Michelle and Uncle Sam's pool table.

Hi Great Grandma.  I like your necklace.

I can't handle all this family time.  I'm exhausted!

Enjoying the beach!

I think we should start every morning with a walk on the beach.

Hanging out poolside!

 Yes, I'm cute and I know it.

And sometimes I'm shy.

Mom, stop taking pictures,  I don't really like this hat.

Daddy, can't we get a pool at home?

Swimming is fun!  But don't think I'm going to sleep more tonight.

Okay, maybe swimming made me tired.  I'll nap now.

 Did someone say I was getting ice cream?

With sprinkles????
 

I had a little bit of ice cream, and now I'm up partying.

Mom, why don't we ever bring my bike on vacation?

This thing is so much fun!

Look mom, I'm steering!

Sunday, March 25, 2012

Blogging Vacation

I've been slacking a lot lately when it comes to blogging.  I'll blame it on having a 13 month old who is getting more and more mobile, therefore requiring more and more of my energy.  There's also the fact that I'm now more than half way through my pregnancy.  And this week we've been busy traveling, and spending time with family, attending my husband's Grandmother's funeral, and finally taking a much needed break!!  The past two weeks or so have been mentally and physically exhausting, and my wonderful husband surprised us with a mini beach getaway on our way home.  Needless to say, after 9 hours in the car, I was more than thrilled to arrive at an oceanfront resort instead of spending the next 6 or more hours in the car!  Okay, I won't lie, there was a little sense of anxiety as I realized that I'd have to find some *replacement* for milk, since I was not expecting this, and didn't bring enough breastmilk!  But other than that, I was completely thrilled!

Once we arrive home we have several appointments, so there will be more updates to come later this week.  Until then, I'm going to enjoy the time with my husband, my daughter, the beach and some excellent food!  I will have LOTS of pictures to come as well.  


Wednesday, March 21, 2012

World Down Syndrome Day

Today (3/21) is World Down Syndrome Day.  A date chosen to represent the three copies of the 21st chromosome that individuals with Down syndrome (like Kennedy) have.  World Down Syndrome Day was created to help recognize individuals with Down syndrome and the important role that they play in our community.  Whether that be in the United States, Europe, or any other foreign country.  Down syndrome exists everywhere.  I had a lot of plans for what we would do to celebrate World Down Syndrome Day today.  Unfortunately, life happens, and plans change.  We aren't home, and I haven't had time to make Kennedy a cute shirt or finish the slideshow I was working on, so I'm just going to write.

Prior to last year, I had never heard of World Down Syndrome Day, and quite honestly I didn't know much about Down syndrome.

That changed on February 19, 2011.  The day that Kennedy was born, was one that rocked my world in ways I would never imagine.  I will never forget when my Midwife told me she suspected Kennedy had Down syndrome.  I'm not going to sugar coat it.  I thought my life was over, I thought that all the things I dreamed of and hoped for were coming to an end.  I was scared.  I had no idea what to expect.  I didn't know much about Down syndrome.  And sadly, no one at the NICU educated us.  It wasn't until I got home and started to connect to other parents that I started to see it wasn't as "grim" as I thought.  I quickly started to learn, Kennedy was just like any other baby.  She ate, slept, and played just like any other baby.  We had our struggles.  Early Intervention, weight gain struggles, and a heart defect that resulted in open heart surgery at 4.5 months old.  But more than anything, life was "normal."  Especially once her surgery was over.  We went on vacation, out to dinner, play dates, and did the things we always dreamed we would do with our daughter.  I wish someone had told me on the day she was born, just how normal life would be.  And just how much Kennedy would teach us, and change us as people.  She has taught us what is truly important in life and has taught us how to be better people.  She has touched the lives of many and brings a smile to the face of everyone she meets.

Kennedy has Down syndrome.  But Down syndrome doesn't define who Kennedy is.  She is beautiful, happy, smart, determined, stubborn, and sometimes she can even be a handful.  She has taught us unconditional love.  She has taught us to open our eyes and our heart and she has helped our friends and family, as well as strangers understand more about intellectual disabilities, like Down syndrome.  She has changed perceptions and taught lessons.  She makes mommy and daddy laugh and cry from joy every single day.  She has taught us to celebrate the little things, and to appreciate what we have, and not stress over things that aren't so important.  She has taught me what really matters in life.

Individuals with Down syndrome have more opportunities today than they did 20 years ago.  And I hope that in 20 years, Kennedy will have even more opportunities than are available today.  I feel a sense of hope and pride every time I read a story about someone with Down syndrome doing something exceptional.  I just know that will be Kennedy.  I don't know what it is that she will do, that's obviously up to her.  But I know that she's going to do something amazing with her life.  All individuals should have the same opportunities, regardless of whether or not they have an intellectual disability.

I'm asking that you please help me spread the word to raise awareness for Down syndrome.  Today is World Down Syndrome Day, but that doesn't mean that it doesn't matter all the other days of the year.  Please help educate your family and friends, so that the rest of the world can see how wonderful people with Down syndrome are.  Help make the world a better place for these individuals.  Kennedy and all of her friends with Down syndrome will thank you for it.

Happy World Down Syndrome Day!!!!


To learn more about World Down Syndrome Day visit this site.

Monday, March 19, 2012

On The Road Again

Kennedy is on the go again.  I'm pretty sure she's traveled more in her first thirteen months than any baby I know.  Fortunately, she's good at it, and enjoys it.  Unfortunately, this impromptu trip north is not for "fun."  Friday was a very sad day for our family.  My husband's grandmother passed away only a week after being diagnosed with cancer.  "Bebe" as she was known to Kennedy, was a wonderful and amazing woman, and she will be greatly missed.  She was one of Kennedy's first visitors in the NICU and just one month ago she was celebrating Kennedy's 1st Birthday with us. 


Just two and a half months ago we made the journey to Virginia when my Grandfather passed away.  Never in a million years did I ever think we would be making the journey to Virginia for another funeral, especially so soon.  In fact, I'm pretty sure that on the way home, I said that it was my last "pregnant road trip."  Yesterday we made the journey to North Carolina, and will be continuing on to Virginia later this week for Bebe's funeral service.  Fortunately for Kennedy she is too little to understand, and to her, she's just on another vacation!  Here's some photos from the past few days.

 Grandma came over to help out so mommy could pack!

What do you mean you can't come on this trip Grandma?

I'm packing my toys for mommy.

I'm ready to hit the road!  Mommy said she disagrees with my shirt though.

Having some mac & cheese along the way!

Is it time to get back to the drive?

We're here!  It's 1am.  Mommy says it's not party time, but I have other ideas.

Can someone bring me my dinner? STAT!
 
Kennedy did amazing on the car ride.  And daddy did a great job driving.  Mommy did a great job of not complaining.  After all, I'm not a big fan of long road trips to begin with, but I'm even less of a fan when I'm 5 months pregnant!  When we arrived at 1am, Kennedy was wide awake.  Girlfriend was ready to party!  And that we did.  Until after 3am.  I figured that she would sleep in at least, right?  Yeah, not the case.  This is vacation in Kennedy's mind, and vacation is not for sleeping.  So we were up at 7:15am.  We were on the go most of the day and Kennedy handled it like a champ!  She also seemed to enjoy her Mexican dinner.  A beef taco, refried beans and rice.  I'm pretty sure someone spiked something because she was a wild woman when we got back to the hotel room!  Crawling, rolling and climbing and playing with all of her toys.  This girl is a maniac in hotels.  


Thursday, March 15, 2012

Summer Days!

I know, I know.  It's not summer.  In fact, it's not even spring yet.  But I'm so excited now that the days are getting longer and the weather is warming up!  For us Floridians, that means temperatures in the 80s, pool season is officially back under way, and evening walks as a family.  Last year we missed out on a lot of swim season, since Kennedy's surgery fell in July and she couldn't swim for at least 6 weeks.  I truly love summer time, even if it also means hurricanes and humidity.  This summer will also bring the birth of our son! 

Today we spent a few hours at Busch Gardens, though Kennedy was less than thrilled with the amount of big kids in the splash park.  Apparently during spring break, is NOT the time to go to Busch Gardens.  We made up for it by coming home and filling Kennedy's pool in the drive way.  She was more than pleased with it.  200 photos later, here's just a few of my smiling girl.  Seriously, this girl melts my heart more and more every day.  Her giggles and smiles only get sweeter.












Saturday, March 10, 2012

Turning Toddler

That's it.  Kennedy is officially turning into a toddler.  Minus the toddling part.  The things she's doing are insane.  For example, attempting to climb out of the grocery cart and her high chair, all in the same week.  She's more and more mobile by the day, though she does not like to be on her knees.  She's perfectly content scooting or rolling.  And when I say scooting, I mean she either scoots on her belly or on her butt.  The girl can make it across the room in no time, on her butt.  My house is quickly becoming baby proofed, and Hurricane Kennedy can tear apart her toy room in no time.  Including her alphabet puzzle mat.

This is not something we're used to around here.  So as my good friend pointed out today, we can officially celebrate the "I can't take my kid to a restaurant without her touching everything" and the "My kid is a menace in the grocery store" milestones.  After all, don't ALL kids do these things?

In addition to all these new milestones that keep mommy and daddy on their toes (and completely exhausted), Kennedy has really started to pick up a lot of other things, like pointing.  She's playing with more and more with purpose and has really mastered the "point" of many of them.  We're always reading books, and the other day I asked her "where's the dog?" on each page of her book.  This smart little cookie pointed to the dog on every single page!  I could not have been more proud.  The moment actually brought tears to my eyes.  There's always a reason to celebrate anytime she hits a new milestone, but the cognitive milestones are definitely my favorite!  It's really amazing to know that she understands us, even if she's not speaking more than mama, dada and lots of babble.  And not 30 minutes later, she was standing at the ottoman playing with her blocks.  She dropped one.  With one hand, she held on to the ottoman, bent over, and picked up the block with the other hand.  I sat there, holding my breath, waiting for her to topple over.  She's done this before.  Usually when I'm holding onto her, and she can bring herself back up.  But anytime she's attempted it, with out my assistance, she falls over.  To my surprise, she stood back up and resumed playing!!!!  Seriously, I was one proud mama on Thursday.

I promise, next week I will have some really wonderful photos to share.  I'm determined to be better about pulling out my camera again.  In the meantime, you're stuck with random iPhone photos from the past few days.
Hey mom! What's going on?

 Seriously, this smile melts my heart more every day. 

Yes, I'm wearing bunny ears.  I'm cute and I know it.

Wednesday, March 7, 2012

Spread The Word To End The Word

Today is Spread The Word To End Te Word Day.  A day specifically meant to raise awareness to the fact that the "r-word" is not appropriate and to end it's use.  It's no secret how I feel about the word and lately I've seen it pop up more and more on Facebook.  I've even confronted a few people about how hurtful it is.  Sometimes people truly don't realize and are apologetic, and other times, people just don't care, which is sad.  I've deleted a few *friends* recently, after I suggested that their use of the word "retard" or "retarded" was inappropriate as well as hurtful, just to be bashed and called oversensitive.  In my opinion, real friends don't use the r-word.


Many medical professionals still use this term, however I have started to see a transition to more appropriate terms, such as intellectual delays or disabilities.  I think that's a step in the right direction.  If the medical community can eliminate it, maybe there's hope that it will become used less overall.

I ask you to visit Spread The Word To End The Word and sign the pledge to eliminate the use of the word from every day speech and to promote the inclusion of people with intellectual disabilities.  I also ask that you please share this with your friends and family.

Think of this face the next time you think about using the word or you see someone else use it.  Please make a difference and do your part to eliminate this awful word from society.


In case you need more reasons not to use it.  Take a look at this video.


Tuesday, March 6, 2012

Look How Far We've Come

Kennedy turning one a few weeks ago was pretty surreal.  It was hard to believe that we had endured so much in her first year.  This morning I was talking to some moms at my local Down syndrome playgroup.  One of the mom's is just starting on this journey, and on the way home it really hit me just have far we've come in a year.  It doesn't seem possible that Kennedy was ever that small, and it's amazing when I look back at how far I've come as a person and how much Kennedy has taught me over the past year. 

Seeing such a tiny baby also brought about the reality of having another little one in the house in a few months!  Of course, it all feels real, especially now that he's actively kicking and flipping around in there.  I keep imagining Kennedy with her little brother, and I am so excited to see her in action.  I know she's going to be a wonderful big sister!  Speaking of the little guy, we have decided that his name will be Caleb Alexander!  And since I've been such a slacking blogger lately, I don't think I've mentioned that we did get the MaterniT21 test results back, and they were negative.  It's weird to say that I was relieved, but that's the best way to describe it.  It was a relief to know that we would not have to switch prenatal care, and that the increased risk of things like cardiac defects is reduced. 

Blogging isn't the only thing I've been slacking on lately, I've been pretty bad about taking pictures as well!  But here's one of the little cutie watching Baby Signing Times and having a snack.  It was also mommy's sneaky way of throwing in some therapy time.  I mean, standing at the ottoman watching TV and eating goldfish is perfectly reasonable therapy. 


Thursday, March 1, 2012

Catch Up Post

I've been really slacking on the blog for the past week.  It's not that I have nothing to say, but finding the time has definitely been hard!  Between getaways, therapy, and life in general and being 18 weeks pregnant (yes - I said 18 - when did THAT happen?) it's been a nearly impossibility to find the time to get something written.  I promise, I'll resume normal blogging this weekend.  In the meantime, here's a major photo bomb to hold you over.  The past week has included two trips to Orlando, two days at Sea World, two hotels, dinners out, a second birthday party, swimming amongst many other things.  (Do you see why I've had no time or energy for blogging?)  Anyway, here is all the cuteness from miss Kennedy!

 I can't wait to see Shamu!

Shamu was one of Kennedy's favorites!

 Mommy can I have a Shamu for my birthday next year?

Someone was so exhausted, she just couldn't take it anymore.

I'm awake, I'm good. What now mom?

I'm not so sure about this strawberry shortcake stuff.

Well those are cute.  Can we bring one home? (Baby dolphins)

Can I swim with them mom?

Okay, maybe I'll nap again.

When are we going back there? That place was fun!

I know everyone thinks I'm cute. I'll keep smiling.

If they don't bring my food soon, I'm going to eat this paper.

I love hotels!  This one is the one I stay up and party at.

Hey peeps!  Want to party with me?

I'm not tired. I'm not going to bed.

Let's play peekaboo mom.

Another birthday cake?  For me?  I love this birthday stuff.

Yay!!! Another hotel!  This will be a fun week!

These sting ray things are so cool mom!  

They said I can pet them!  I'm going for it!

Mom!! Why won't you put me a little closer so I can pet them?

Grandma, can we go back to see the sting rays?

Really mom!  I'm good.  Just a little closer!

Wow!!! Those are really cool Grandma!

Kennedy loved the dolphins.  I think more than Shamu.

I like Shamu mom, but I'm not sure about this.

Can we go on the carousel mom?

 That was so much fun!  Now who are those funny guys?  They look neat!

Kennedy loved these guys!

 Oh my gosh I love this place!

Kennedy's first trip to Senor Frogs.  And her first sombrero.

If I chew on this elephants nose does it mean Grandma has to buy it?

I'm so glad it's swimming season again!

Do I really get to play in all those fountains?

Really mom?  I can go at that fountain?

What's with the big kid shooting me with water?

Splashing is much more fun here than the tub.

Grandma and Kennedy bonding over Sophie while waiting for dinner.

Hey mom, I'm going to throw Sophie on the floor again.

I LOVE ice cream!!!  Can I have some more?  With sprinkles?

Vacation is exhausting.  I can't take it any more. Mom, you can sleep on the couch, right?