Wednesday, November 30, 2011

Diagnosis: Amazing

Kennedy had her 9 month well baby appointment today, and it went GREAT!  She's weighing in at 16lbs 9oz and is 26.75 inches!  It is so hard to believe how much she's grown.  It's even harder to believe how far we've come.  That at one point we were stressing over heart surgery and weight gain.  That we were practically force feeding her, and now I can't keep up with how much she wants to eat.  I think it hits me more every day.  She's truly turning into a little girl before my eyes.  Dr. Perkins was thrilled with her growth, her muscle tone, and her eating habits.  She also confirmed that she doesn't have the significant low tone that most babies with Down syndrome have.  She was amazed at how well she's doing developmentally and despite the PT's lack of enthusiasm for her backwards crawl, she was very happy!  She said, she's amazing.  And that she is.  She's been through so much and has proven that she's not going to let anyone tell her what she can and can't do.

We also had another very successful EI session.  Kennedy was full of things to say, was happy to play with the cups that Miss Amanda brought her, and she was full of smiles and giggles.  I think it's finally safe to say that we've reached a new milestone with EI.  Now hopefully we can build the same relationship with a new PT. 

And now, here's a few pictures and a video.  Kennedy LOVES to give kisses these days.  It may or may not have something to do with the fact that her father and I give her about 100 or more kisses a day.  But Kennedy's kisses are extra special.  They are wide-open-mouth-slobbery kisses.  And she has to grab at your face and neck while she does it.  It's completely adorable.  And she may or may not sneak a bite or two of your nose.

Here's a video of Kennedy attacking Grandma for kisses today!

Today was also her first experience with scrambled eggs.  Over all, it seems to have been a success.

Would you eat dry toast mom? Can't I have some jelly?

Look mom, eggs!

I got some in my mouth, some in my lap, some on the I'll get them in my hair.

Take this mom!

Tuesday, November 29, 2011

He Did NOT Say That

This following is all pretty ironic considering what I wrote about yesterday.  Today was PT day, and I have to admit, I was pretty excited to show him the backwards crawl.  This is a huge step for us...even if it is backward, it's a step in the right direction, right?  Well, he wasn't nearly as thrilled with her backward crawl as I was.  His exact words were, "Well that's the wrong direction.  Do you have a rear view mirror Kennedy?"  And, if I wasn't already having mommy guilt that I don't do enough to help Kennedy, he pretty much told me that I'm not.  Actually his exact words were, "You know, her success is dependent on how hard you're working with her."  He followed that by telling me I need to work harder to get her to crawl forward. 

Just how much can I do?  Really?  I work so hard with her, and I'm so proud of every milestone she meets, no matter how large or small.  I refuse to force her to do exercises 24/7 and I'm not going to spend hours a day doing one exercise that makes her scream bloody murder. 

Do I think I'm not doing enough?  Of course, I always worry about that.  But in reality, I do a lot!  I shouldn't feel guilty.  I shouldn't question what I'm doing.  I'm really looking forward to our visit at Hope Haven next week.  I think that will shed some light on how things are going, and what we should be focusing on. 

(I promise, I'll have some adorable photos and videos of Miss Kennedy tomorrow.)

Monday, November 28, 2011

Crawling and Other Milestones

Don't let me fool you.  As much as I know that Kennedy will do things on her own time, when she's ready, I always worry that I'm not doing enough to help her.  I've always stood firm in that I want a happy medium between obsessing over therapies and letting her have a "normal life."  For the most part, I feel like we have that.  But there's always a little part of me that feels guilty when I leave her to play on the floor while I do laundry or dishes.  Everyone told me when we got her diagnosis to throw the milestone charts out the window because none of them matter and "our kids" aren't held to those expectations.  Yet I still look at the charts and emails, and feel like I'm under even more pressure to help her achieve those things.  I know not to compare her to other kids her age, but it's hard when all of her friends are walking and crawling.  Everyone always asks me, "Is she walking yet?"  When I say no, then they ask if she's crawling.  It gets frustrating having to answer, "no" all the time.  Why does the grocery store cashier REALLY care if my kid is walking?  Sometimes I feel the need to explain why she's not doing those things yet, but then I think, why is it any of their business? 

Well, as Kennedy usually does, she's figuring out how to move, and is well on her way to being mobile I think.  Of course, for right now, it's only backwards.  But I'll take what I can get.  I even got a little of it on video.  Of course, every time I recorded her, she would stop. 

We've also been hearing lots of "dadadada" around here for the past few weeks.  Every now and then I'd get an occasional mama.  Things seem to have changed today.  Not only am I hearing a lot of "mama" but she's already mastered "mom."  Of course, that said, I don't think she knows to associate it with me.  And I'm sure she'll likely call my husband mom too.  But I'm really excited that she's starting to pick up on more words and sounds.  We'll keep working on the association part.  And I'll be sure to work on getting that on video.

Saturday, November 26, 2011

Let the Festivities Begin!

I couldn't be more excited about the holiday season.  I'm doing everything I can to pack it full of traditions and memories!  This weekend included getting our Christmas tree, seeing the Christmas show at a local outdoor mall, and visiting Santa!  I'll let the pictures do all the talking.

I just need a little nap before we go find the perfect tree.

Mommy says there's something wrong with buying a tree in the parking lot of Home Depot.  But I'm okay with it.

Can we get a 12 foot one?

That one looks perfect mom.

Enjoying the Christmas show with mommy, daddy and Grandma.

This is so fun daddy! I love Christmas lights.

Hey daddy, can we make our tree look like that?

I'm not so sure about this cold white stuff!  What did you call it again?

I can't wait to meet Santa!

Do you think he'll like my outfit?

Is the line almost over mama?

Look mama, my hand is almost as big.

Daddy, can we get a pet polar bear?

How come our Christmas tree doesn't look like this at home?

I like this stuff better than last night, it's not cold!

I didn't think Santa would be so grumpy mama, can we find a happier one?

Friday, November 25, 2011

Kennedy's First Thanksgiving

Kennedy was so excited to celebrate Thanksgiving that she woke up at 3:45 yesterday morning.  That made for a long day, with few naps.  I could not have asked for a better day though.  Kennedy and I have both talked about what we're thankful for over the past few weeks.  Most of all, Marlon and I are thankful for Kennedy.  She is truly a dream come true and the start of our family.  She is what we've dreamed of for many years.  We always talked about holidays with kids, and how they would be so much better - and they are.  We're also thankful for our family and friends who have been so supportive this year.  We have experienced some of the most wonderful and also challenging things all at once this year, and we sincerely appreciate everyone's support. 

Kennedy also wanted me to let all of the readers know that even though she's thankful for her piggies, hair bows, clothes, toys and Grandma's Visa - she's most thankful for her mommy and daddy!  She knows Mommy and Daddy love her more than anything and would do anything for her. 

Here's some photos from Kennedy's First Thanksgiving.  We spent a quiet day at home with my mom and mother-in-law.  Kennedy enjoyed the Macy's Thanksgiving Parade, and spent the day eating her favorite foods. 

Toast and the Macy's Parade, what more can a girl ask for?

Look Mommy!!  Snoopy!!

 What's that mama?

I found another piece of toast.

Grandma, look at my feetsies.

Seriously, these people are boring.

Hey Grandma, can I have your credit card?  I need to order these skinny jeans.

Hey mom, how's lunch coming?

Daddy stop tickling me!

Yummmm!  Sweet potatoes!

Hi Grammy!  Whatcha drinking?

I want to help cook the turkey daddy!
Hey Grandma, look at my toy.

 I'm going to eat this toy until dinner is done.

Grandma knew where the Cheerios are!

Thanks for cooking all the good food daddy!

Look at my ball Grammy.

Almost time to eat!  I should have napped, I'm getting sleepy.

But I'm really excited to eat!

Make it snappy mom! I'm starving!

More gravy please?

Wednesday, November 23, 2011

Thankful for Kennedy (And Other Random Updates)

We've had a pretty busy week and some of you may have noticed, I've been slacking a little in the blogging department.  I think I'm finally taking a much needed break after all of my awareness posts!  I will have lots of pictures tomorrow, which will most likely be posted upon my return from shopping on Friday.

The week was kicked off with another birthday party.  Kennedy once again enjoyed her cake and party hat! 

The crazy bath time baby also struck again.  It's completely hysterical to watch.  But don't give her a bath unless you're prepared to be soaked, and to clean the bathroom.

And who can forget about PT and EI?  I figured this weeks sessions were going to be off to a rough start when Kennedy fell asleep 10 minutes before her PT showed up.  Apparently she thought this was a good way to get out of working.

However, that didn't work.  And for the first time ever, she managed to only scream through half of her PT session.  The rest was all smiles.  I was a little concerned that this meant EI would be a disaster.  After all, what are the chances we could have two successful sessions in one week?  Well, we hit the lottery jackpot this week!  I'm proud to say that for the first time in 6 months, we made it through an ENTIRE session of EI, and we didn't have one tear.  Amanda was really excited, and so was mama. 

Kennedy also figured out how to scoot herself backwards this week.  At one point she ended up off her play mat and against the sliding glass door, and the other time she ended up under the table.  Note - she won't do it when we're in the room.

Mommmmmmy!  Help!!!  I'm stuck!!!

Someone posted a question on Facebook, about what's the ONE thing you're most thankful for.  Of course I'm thankful for my amazing husband and wonderful family. But most of all, I'm thankful for Kennedy.  She has opened my eyes and taught me so much in 9 short months.  She's changed my life in ways that I never imagined.  She's shown strength and determination.  And she's been through more in 9 months than I have in almost 30 years, but always comes out on top.  She's a fighter and I could not be more proud, or any more in love.  I am thankful to be celebrating this Thanksgiving with my husband and my big girl! (And the Grandmas!)  

Kennedy, Marlon and I wish you all a Happy Thanksgiving!!!