Going Backwards....

Have I mentioned lately how happy I am that Kennedy is "mobile?"  However, she's still going backwards.  And I think at this point, it's safe to say that we're both over it.  I think she wants to crawl forward as much as I want her to.  She's constantly stuck under or between something, and I'm constantly having to remove her from these places.  Today was the wall unit in the playroom. 

I've tried everything to get her forward.  I've tried bribing her with phones, computers, and even food.  Today, I decided that I'd try leaving her where she was.  Maybe being stuck under the wall unit would encourage her to crawl forward.  Well, she sure tried.  But sadly, she was only able to wiggle herself out a little and sideways.  At least she got one leg free.  It's a start, right?

 

One of these days she's really going to shock me!  I suppose now is a good time to mention, we have no more PT.  If you remember several weeks back, I posted about how Kennedy's PT insulted me over her backward crawling.  I decided to request a new one, since he was also very inconsistent.  Well, long story short, they have denied her services all together now.  I have been fighting for weeks, and last week I attended a meeting where I insisted that they do a re-evaluation, since her first eval was at 6 weeks.  Well, the good news is that she scored REALLY well.  She was in the lower end of average for all skills, and fell just slightly below in motor skills.  We knew that's her biggest delay, but apparently not a big enough of a delay to warrant additional services.  In fact, they told me if she didn't have Down syndrome we wouldn't qualify for anything.  As much as I'm thrilled that she's doing so well, I can't help but feel like we're losing out on something really important.  After much arguing, they finally agreed to have a PT consult with our Early Interventionist.  She doesn't think that's going to do any good, but my plan is to be back on the phone with them in a few weeks if there's no improvement.  I'm also looking into private therapy.  Unfortunately, it's not a very cost or time effective solution.  The closest pediatric PT is about 45 minutes away.  

I just ordered the book Gross Motor Skills for Children with Down syndrome, and I plan on really stepping up what we're doing at home.  I've been working with her, but I'm no professional, and I don't know what exercises to do unless someone shows me.  So now I'm going to count on the book to show me.  This doesn't mean my fight is over, but I'm quickly finding out that I'm not easily getting my way and I'm losing precious time.  

Here's some other pictures...that don't involve being stuck under furniture.

Kennedy had lots of fun with her big cousin Carla who was visiting from New Jersey this week.

Kennedy has also taken her eating to a new level.  She's refusing lots of the basics and becoming a real picky eater.  She's very specific about her tastes.  Her favorite is still hummus and pita bread.  But tonight's refusal to eat macaroni and cheese, led to me giving her tacos and avocado.  Which, as you can see, she loved. 

Catching Up!

This is always a busy time of year, but I promise, I will get back to blogging regularly soon.  I'm exhausted after a busy weekend, and have an even busier week ahead, so I don't have much to say.  However, I do have TONS of photos to share.  We went over to Orlando this weekend to "do Disney" but after considering how crowded the park would be, we opted to do it in another month or two, when the park is less crowded and we're more likely to enjoy it.  So we stayed at one of our favorite hotels, and then visited all the other (much more expensive hotels - like the Grand Floridian) and saw their decorations and went to Downtown Disney.  We all had a wonderful time, and wrapped up the weekend with a stop at the beach.  We really don't take advantage of all that Florida has to offer, so we're determined to start doing that more.

I also have our Christmas photos to share, but they deserve a post of their own, so look for those later in the week (or maybe even as early as tomorrow.)

(Oh, and by the way.  Kennedy crawled completely across the room today....backwards.)

You're giving me WHAT for lunch?

Ravioli and meatballs are a lot better than I expected.

I give this meal a thumbs up!

Can I have this more often?  It's also fun to play with.

What's in these noodles?

Look blog people, I'm a big girl now. I can take a bath with out my tub in a tub.

 Do you people know how much I love vacation?  And this is a super big hotel.

Chicken tenders? More new food.  I like this.  Sorry I bit your finger mom.

I'm gonna help daddy with this project.  As soon as he's done working we get to go have fun.

Our hotel has SAND!

Mommy says this is one of her favorite hotels.  Now I know why.

 Mommy and daddy said maybe next year they'll take me to the real Key West.

Daddy, don't let the gators get me!  And why are there gators in the hotel anyway?

Can we have a Christmas tree like this at home?

I'm snug as a bug on mommy.  I've seen enough decorations for tonight.

I slept through all of Downtown Disney, now I want to party and enjoy this hotel.  Until 4:30am.

Oh, I'm tired.  Do we have to go to breakfast now?  I guess I should have listened to you mom.

Can we have a fishy tank like this at home?  Maybe in my room?

Look at that one dad. 

You don't mind if I play with this place mat do you? 

Who needs a high chair when you can sit on the table?

 This is the life.   Mommy says this is why we live in Florida.

It's fun to play in the sand.  And kick my feet in it.  And eat it.  See my castle? I did it with my feet.

 This feels funny on my feetsies.

Mommy it feels weird!

MOMMY!  The water got me!  And it's cold!

Help me! I'm sinking mom!

Mommy and daddy even took me back to the hotel they got married at.  They said it was also my first vacation, but I don't really remember it.  I think it was before Dr. Q gave me all my extra energy.

 

36 Hours

36 Hours from now Kennedy will be in surgery.  I'm not sure who is taking this harder or who has cried more today.  There's one thing for sure.  It's not Kennedy.  She is blissfully unaware of what is ahead of her.  Unfortunately for Marlon and I, the reality is upon us.  The day we have been dreading since the day Kennedy was born.  The day that we couldn't think about because it was so far away.  Now, that day is here.  Tomorrow we'll be admitted, and Tuesday morning is the hardest and longest four hours of our lives.  This is not how I wanted to spend Kennedy's first Fourth of July holiday.  Is it wrong that I considered sneaking her out to go see fireworks?  After all, we're only there for pre-op testing.  One thing is for sure.  Tuesday cannot come and go soon enough for us. 

We did have a wonderful "family weekend."  We decided that we would abandon the house (anyone know a good cleaning lady that can work wonders while we're in the hospital?)  And we decided that despite the fact that we shouldn't spend the money, we were going to eat out every single meal for the weekend.  Neither of us had the energy or desire to cook or wash dishes.  So our meals have included Thai, Salads, bagel shops, stir fry, pizza, and wings.  I went against all of my mommy beliefs on Friday night.  I decided that a small taste of ice cream was completely acceptable a few days before open heart surgery.  So, I put a tiny bit on my finger and let her taste it.

Umm...Mommy what is this and WHY is it so cold???

Wait...can you put your finger back in my mouth? Maybe it's not so bad.

Okay mom, that stuff is good.  What do you mean I only get one tiny taste?

We also went to visit both Grandmas yesterday and then we took Kennedy for her first trip to the aquarium.  She seemed to love it!  She loved looking at the big fish and turtles, and she especially loved the bright colored fish and all the colorful coral.  It was so cute to see the faces she made.  I can't wait to take her back as she gets a little bit older.  It also made me think about how much she's going to love going to places like the zoo, Disney World, and Sea World.