Monday, October 31, 2011

31 For 21: Happy Halloween

Happy Halloween from the cutest pink elephant around (and her mommy!)

Kennedy made the most of her first Halloween, even though she slept through part of it.  She was the hit of the neighborhood and didn't want the fun to end.  Holidays truly are better with kids, and even though mom and dad probably enjoyed this more than Kennedy, it was wonderful making such great memories and starting new traditions.  Here are some pictures from Kennedy's first Halloween!

Yes, I know, I'm the cutest pink elephant in town.

Being a pink elephant on the sidewalk is REALLY funny mom.

Can I just sit here and wave at all the people driving by?  I know they think I'm cute.

I can't believe you're bringing me to the grocery store like this.  I'm taking a nap.

Dad, I warned you trick or treating at Publix would be lame.  This isn't even worth being awake.

Enjoying my first Halloween with mom and dad!

Trick or treating!

This is so much fun mom!

Did you hear those people?  They think I'm cute.  I totally knew it mom.

 Remember that nap I took during trick or treating?  Now I don't wanna sleep.  Keep walking, I like the Halloween decorations around the neighborhood.

On another note, the 31 for 21 Challenge is coming to an end tonight.  I hope I didn't bore my readers too much.  I also hope that you all learned something, and can pass it along to your friends or family.  Just because the month is up, it doesn't mean that Down syndrome awareness comes to an end.  I would say that you won't be hearing from me for a few days, but tomorrow is Kennedy's PT eval, and Wednesday we're testing out a new theory for Early Intervention, so I'll probably have updates on that.  But you definitely won't be seeing daily posts for awhile!

Sunday, October 30, 2011

31 For 21: More About Awareness (and a Baby in a Pumpkin)

As October comes to a close, I just want to remind everyone that my point of blogging every day this month was for Down syndrome Awareness Month.  I didn't talk about Down syndrome every day, but then again, we don't think about Down syndrome every day.  It doesn't rule our lives.  But Kennedy, who happens to have an extra chromosome does rule our lives.  Of course, even if she didn't have that extra chromosome, she still would!

This month I talked about heartwarming stories, discovering strength, and how people with Down syndrome are more alike than different.  I gave you facts about Down syndrome and facts about Kennedy.  I asked you to use people first language, and I shared survery results about how great peoples' lives with Down syndrome are.  I talked about Kennedy's therapy and I shared TONS of pictures of her.  I also blogged a lot about nothing.  I'm sure I probably bored you all to death, and you'll probably be thrilled that as of Tuesday, I'll be back to blogging every other day or so.  (Of course, with the holidays coming there will be tons of pictures.)

I've asked a lot of things of my readers.  I've asked you not to use the "r" word.  I've asked you to use people first language.  I've asked you to treat individuals with Down syndrome the same as you would anyone else.  Now I'm asking you to share what I've told you.  Help me make others aware.  I'm challenging you to share my blog with your friends.  Post it on Facebook.  Tell your friends about it.  Pass on the information that I've shared with you.  Help me get the message across that life with Down syndrome is wonderful, and that my daughter, and others with Down syndrome are more alike than different.  I am living proof that most people don't know a lot about Down syndrome until their lives are touched by it.  I didn't know much about it until I had Kennedy.  I want to change that, but I need your help.

And now, what you're all waiting for.  Pictures of a baby in a pumpkin.  But before I share the pictures of the baby in the pumpkin, I have a few other pictures from today's Halloween festivities.  ENJOY!

Happy Halloween Everyone!!!

 I love playing in the hay!!

Isn't this stuff so much fun mom?

Hey dad, come play in the hay with me?

You have no idea what you're missing.

Mom, I feel like someone's watching me.

I love this time of year!  Why can't we always have hay?

I can't wait to carve pumpkins with mommy and daddy!

Mom...are you for real?  This is kinda squishy.

I might like squishy.  It feels neat between my toes.

I can't believe I'm in a pumpkin, NAKED, in the front yard.

Mom!!  The neighbors just drove by!

This is a lot better.  Watching daddy carve my pumpkins.

Excuse me mom?  AGAIN?  I thought we were done with this. Dad, can you help me out here?

Why are you laughing so hard mom?

Okay, you're right.  I'm sure this is pretty funny.  Are we almost done?

I'm getting over this mom.  Hurry up.

I mean it!  I'm D.O.N.E.!!!!!!

Saturday, October 29, 2011

31 For 21: Christmas is Coming

Christmas truly is our favorite time of year.  And having Kennedy here is going to make the Christmas season about a million times better.  You can imagine that Marlon and I were pretty excited to hear Christmas music in some of the stores at the mall today.  We already have November and December jam packed with plans, and are excited to start new traditions.  Today began the search for that "perfect Christmas dress."  It was also the start of what appears to be an endless search for "Baby's First Christmas" pajamas.  Apparently they only make these in up to 9 months size.  Well, more than likely, Kennedy will be in a 12 month size sleeper by then.  WHY do they only make them in sizes up to 9 months?  That's just ridiculous.  Aside from the pajama crisis, the plans are in full swing.  Decorating will begin on November 1st.  Last year we had five (yes, five) Christmas trees, and this year we're planning for seven (yes, seven.)  I suspect that once we get seven Christmas trees with lights and ornaments, Kennedy will decide to become mobile.  I anticipate that our house may look like something out of the National Lampoon's movie.  And that Marlon may be pulling some moves like Tim Taylor on Home Improvement.  Wish me luck! 

Christmas plans aside, tomorrow Operation Baby in a Pumpkin will take place.  Seeing as how Monday is Halloween, we're finally going to get around to carving pumpkins.  Part of this includes sticking Kennedy in a big pumpkin.  Her and I had a talk about it today, and she's totally good with it.  Stay tuned for pictures of that tomorrow.  Until then, I'm off to continue my search for Baby's First Christmas pajamas. 

Friday, October 28, 2011

31 For 21: Knees!

Imagine this - I don't have much to say.  And even less to say about Down syndrome.  However, I've mentioned numerous times how much Kennedy HATES getting on her knees during therapy.  And yesterday I mentioned her changing sleep positions.  Well, tonight I went in to check on her, and she was up on her knees, but in the air.  So, it's official.  She's just flat out stubborn and doesn't want to do things unless she wants to.

Thursday, October 27, 2011

31 For 21: 96 Hours and a Sneaky Baby

Who do I talk to about changing the days to have 96 hours instead of 24?  I have far too much to do and 24 hours just isn't cutting it anymore.  Taking care of Kennedy is a full time job in itself.  Then there's my "other job" which requires about 10 hours a week.  Fortunately I can do this job from home and it's VERY flexible.  And that boss even understands that things come up, and babies get sick.  Then throw in cooking and cleaning.  And then any other random responsibilities and commitments.  Hair bow orders, doctor appointments, and grocery shopping just to name a few.  Then mix in a few unknowns that are sure to come up during the week.  Like a sick mama and baby or having to deal with some "crisis" related to Early Intervention.  This week pretty much all of those scenarios have happened, and then some.  The house looks like a hurricane came through, and my list of things to do is about two miles longer than it was at the beginning of the week.  But today, I put everything aside and spent the day snuggling my little monkey and bringing her back to health.  I'm happy to report *knock on wood* that it appears her stuffy nose is headed out as quickly as it showed up.  By the time she went to bed tonight, she was full of smiles and giggles, playing with her toys, and fighting her sleep. 

Speaking of the little monkey.  Last night Kennedy ended up sleeping on her belly.  Of course, she spent the first several hours up and down with the annoying stuffy nose.  It was a nice excuse for me to lay in bed from 8pm on.  Around midnight, she popped herself up on her arms (still asleep).  Then got up on her knees.  In her sleep.  Three or four times.  Wiggling herself around the bed.  Excuse me?  This is the same kid who screams bloody murder during therapy when it's time to get on her knees.  So, I'm even more convinced now.  She CAN do it, she just chooses not to.  She's managed to maneuver around more and more, and I fear that my days of leaving her in one place are coming to an end.  Today, I left her sitting in the middle of the bed to play with Porky, while I made up some bottles.  I came back a few minutes later to an apparently VERY sleepy baby.  In a completely different position than I left her.  And who says that she can't move from one position to the next on her own?  And have I mentioned how much she loves Porky?

Disclaimer: She really could breathe, though this picture is deceptive!

Wednesday, October 26, 2011

31 For 21: Appointment Day

Poor Kennedy had to put up with all sorts of appointments today.  First up was Cardiology.  Kennedy has a routine on Cardiology days.  She wakes up to party in the middle of the night, so that mom oversleeps.  She followed through as always.  Despite waking up late, we arrived promptly for our appointment.  And we waited.

I'll just sit here and play while you fill out those papers.

Then we got weighed - just under 16 pounds.  We measured in at just over 25 1/2 inches.  She skipped her tradition of peeing on the scale.  Then it was time for the EKG.

Hey miss Deb, let me help you with those wires.
Then it was time to wait for the echo.  We waited, and waited and waited.  Luckily, Kennedy was pretty content.  Her piggys were the hit of the office and everyone came in to see us her.  We played with Sophie and Flutterby and we even had a snack. 

Mom!!! Stop taking pictures of me.  I'm NAKED!

Nom nom nom....I love my Mum Mums. 

Finally - we had our echo.  Kennedy hates this part, and didn't make it a pleasant experience for the tech.  Fortunately, she loves Kennedy, and was happy to see her squirming and moving around the table.  Then we waited some more.  And we played with our ball.  Seriously, I have no idea how I got so lucky to have such an awesome kid.  This was more than 2 hours after we got to the doctor.  She was handling the wait better than I was.

I can't believe you only brought two Mum Mums. I guess I have to eat my ball.

Here mom, want a bite?  I'm okay with sharing.

Go long mom!  Hurry!  I'm gonna throw it out in the lobby!  Catch!

How come we don't come here to play more often?

All in all, it was a great cardiology appointment.  The doctor said that her repair could not look more perfect.  There's no leakage around the patches or the valves.  There was a slight increase in the pressures on the right, that we need to check again in 3 months.  He said it's not uncommon in kids with Down syndrome, and he really thinks it's an isolated incident.  However, it can be an indicator of sleep apnea, so we'll have to investigate further if it increases.  Soooo....we go back in 3 months, instead of a year. 

We also had Early Intervention today.  I'm pleased to say that it went amazingly well.  There were some tears in the beginning, but she spent much of the time full of smiles and showing off her accomplishments.  In an attempt to get Kennedy to like Amanda even more, EI will take place at the park next week. 

And to end our day on a negative note, Kennedy is officially sick for the first time.  I feel absolutely horrible.  We have worked so hard to keep her healthy, but we failed on this one.  Of course the mommy guilt is kicking in.  I've found 100 things I should or shouldn't have done.  I'm just praying that this is nothing more than a common cold and she gets through it quickly.  

I did manage to snap a few pictures earlier, before she started feeling yucky.  

Tuesday, October 25, 2011

31 For 21: Just Another Day at the Park

I've once again broken the promise for Halloween pictures, and tomorrow probably won't be any better.  To make up for the craziness that our life has been for the past several days, I took Kennedy to the park.  I'm telling you, this kid loves to swing.  I know that I'm going to have to set limits in life, but I always feel bad ending our park time, because she never gets sick of it.  She hung out in the swing for 40 minutes today, just talking away. 

Tomorrow we have a follow up appointment with Cardiology.  Kennedy had surgery nearly 4 months ago, and has been off all medications for over 2 months now.  All of her echos have showed nothing but wonderful progress.  What little leakage there was, has continued to decrease.  But, none of that ever seems to keep me from being nervous about these appointments.  To top it off, we're not seeing Kennedy's Cardiologist, because she's on maternity leave.  Not to mention, these echos get harder and harder the older she gets! 

Here's some more pictures of little miss swinging.  And a video of her talking.

Monday, October 24, 2011

31 For 21: It's Official

I know this whole month and the reason I'm blogging every day is to bring awareness for Down syndrome.  But to be completely honest - I just don't have anything more to say about it.  It doesn't rule our lives, and I'm truly blessed to have such an amazing little girl - no matter how many chromosomes she happens to have.

That said, last week's rough week is carrying over into this week, and I'm sick.  But when you're mom there are no days off.  In fact, not only do I not get a day off, I'm spending all day worrying that I'm going to make Kennedy sick too!  Which is the last thing she needs.  The best part of being sick, is that I got the chance to take a really great nap with my princess today.  It's a rarity that Kennedy will sleep for 2 hours, but she must have known that mommy needed it!  Now that I think about it, the nap was so good, I think I'm going to join the little monkey in bed now.  I promise, Halloween pictures to come tomorrow.  No matter how awful I feel, I'm going to take some.

Sunday, October 23, 2011

31 For 21: Swings and Noses

I'm once again at a loss for words.  My goal of blogging earlier in the day isn't going so well.  And by this time of night, I guess I'm just speechless! 

We took Kennedy to the park today, and let me tell you this kid is growing up!  We all know how much Kennedy loves to swing, but today's adventures were a bit different.  She usually just hangs out, leaning over the front of the swing.  Not today, she wanted to hold herself up.  She was moving all around in the swing, kicking her legs around, and when she leaned back, she would use the front of the swing to pull herself forward again.  Unfortunately, our adventures at the park usually aren't worthy of the video camera, and my iPhone chose that moment to act up.  But I did catch a short video of her new swinging antics.

Secondly, if you remember yesterday's post, Kennedy demonstrated her obsession with Porky's nose.  Apparently it isn't just Porky.  She has a nose obsession in general! 

Oh Minnie, your nose tastes so good!

Hope everyone had a wonderful weekend!

Saturday, October 22, 2011

31 For 21: The Roller Coaster

This week has been a roller coaster.  We've had ups and downs, and have literally been whipped in one direction to the next.  We've gone from happiness to sorrow and everything in between.  It just goes to show that you never know what cards you're going to be dealt, and you never know how things can change from one minute to the next.  Since Marlon and I have been married, we've sure been dealt a lot of tough cards, but one thing is for sure.  Somehow we manage to get through it, and we come out stronger and better people.  That said, it doesn't stop you from sometimes asking why things happen the way they do.  But in the end, it's better not to think about it.

We are so fortunate and so blessed to have such a wonderful little girl.  A princess who has a smile and a laugh that can light up a room, and that can make your day.  No matter what's happening, or how challenging things may seem, one smile and the world seems better.  She's been through more in her 8 months of life than I have in 29 years.  In fact, she's been through more than her dad and I in our 60+ years combined.  And yet, she has the best outlook on life.

We put all of this weeks events aside and went to Orlando for a quick getaway and to see some family.  We spent a great night with my wonderful aunt and uncle at City Walk, were able to enjoy a beautiful day at Downtown Disney today, and ended it all with seeing my husband's great family!  Here's some (okay - a lot) of photos from the weekend.

I decided to nap, just as we got to City Walk.  So mommy covered me up and I rode in my stroller old school style.

When I woke up, I played with my Great Aunt Michelle's hair.

This woman is CRAZY!  But a lot of fun.  She scored brownie points by helping mom change my stinky diaper in the bathroom at Margaritaville.

Mom, I'm telling you, this lady is silly.

Sorry guys, there's too many people to watch.  I don't have time for pictures. 

Hey Great Uncle Sam, you don't mind if I pull on this do you?

Dad, do you think you could get one of these things? It's pretty fun to play with.

Who turned off the sun?  This is Florida, is it not?  Mom, what do you mean you didn't bring me a hat?

At least Uncle Sam brought a hat that I could wear.  But it doesn't really match....or fit.

Thanks for the rice mister!

Why do these people insist on taking so many pictures?

I'm going to take a cat nap now mom.  That way I can stay up and party when we leave here. 

These people are fun, why don't we live closer to them?

Where's Mickey? What do you mean he doesn't walk around Downtown Disney?

Are you kidding me mom?

This stuff is so fun to play in.  Can we have it in the yard dad?

No mom, I'm busy being nosy.  I'm not going to smile for pictures.

I'm looking at you.  What more do you want?

Well this is different.

 What do you mean you won't share your chocolate from Ghirardelli chocolate? You've never heard of chocolate milk?

Chillin' with my life size Minnie Mouse.

This place is exhausting....

I love Porky!

Come here Porky, I'm gonna get your nose!

Got your nose!!!!!  That's what daddy says to me when he gives me Eskimo kisses.

 Look mom, I'm holding my bottle with only one hand.