Must. Get. Cheerios.

Kennedy has been "crawling' so to speak for awhile.  Whether it be army crawly, scooting, whatever you want to call it.  We've been working on the hands and knees crawling, but this kiddo has always hated being on her knees.  Until recently.  She's been getting on her hands and knees for brief amounts of time, and yesterday she just decided to go with it.  We are mastering the hands and knees crawl!  Of course, her biggest motivation is - you guessed it - Cheerios!

She has definitely taken off with it and has been crawling on her hands and knees with more confidence and a little less effort.  I suspect in no time, I won't be able to keep up with her!  I could not be any more proud, especially because I know how hard this little princess has been working at this!

Changing Perceptions

When I started this blog (over a year ago!) I did it with many intentions.  As a way for me to get my feelings out on paper, and to document our journey so I would never forget anything.  A way to keep friends and family informed.  Because I learned so much from reading others blogs, I had hope that mine would one day help someone else.  And although I didn't have it in mind when I started the blog, I decided that I wanted Kennedy (and her blog) to help change people's perception of Down syndrome, and to educate them about how wonderful life really is. 

It seems like that's a mission that a lot of parents of special needs children have.  We should not have to convince people that all life is valuable, or that Down syndrome doesn't mean your world is no longer "normal."  I read a post from a physician this morning.  She has a child with Down syndrome, and she admitted her fears upon getting the diagnosis, and the discovery that medical school did not provide her with a real life example of what Down syndrome was.  She's not set out to change that.  Sadly, she's met some resistance.  I know for a fact that Kennedy (and this blog) have changed at least a few people's perception of Down syndrome.  For me, changing one person's perception makes a difference.  But I'm not going to stop there.  You can read Dr. Julia Kinder's article here. 

Life really is normal for us.  Better than normal actually.  Sure, we have a few more appointments, and Kennedy may not be doing everything "by the books" but the same can hold true for a child with 46 chromosomes too.  Right now, as I sit here typing this, I'm watching Kennedy crawl around, in search of the Cheerios she left on the floor last night.  Sadly, she doesn't know that mommy cleaned up 99% of them after she went to bed.  Yes, *most* kids her age are walking.  But I'm okay with crawling.  She will walk when she's ready, just like any child. 

Here's some photos from last week's adventures on the fake grass.  I finally got around to getting unpacked and downloading them.  Maybe now that our marathon travels are over, I can get back to regular blogging (but don't hold your breath, something always comes up.) 

Mommy it's windy out!!!!!

 But I think I like it!

 This is much better.  My piggies aren't blowing around.

 Can we please get fake grass at home???

I promise, I will use it all the time!

Grandma?  Will you buy me fake grass?

 

On that note...Kennedy has given up her hunt for Cheerios and is now making a toy out of the DVR.  Guess it's time for a new activity!

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. 

Go Baby, Go!

Kennedy has got this crawling thing down!  Backwards.  She can get across the whole room. 

Unfortunately that also means she can get stuck under, and around pretty much anything.  Furniture.  Christmas trees.  Walls.  Today I was doing laundry and heard a very upset baby screaming "Mom mom mom mom."  I came running in, and saw this:

Mommmmm!!  Stop taking pictures and get me out of here!!!!!

So just a little note to my sweet little Kennedy.  Mommy is SOOOOOO proud of your newest and one of the biggest milestones.  But if you started crawling forward, you would stop getting stuck under everything.  I promise!!! 

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.

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!!! 

I lied

You're stuck with me for one more week of consecutive blogging.  November 1st-7th is Down syndrome Awareness week in Canada.  I know, I know.  I don't live anywhere near Canada.  And I hope I never do (remember, I'm a Florida girl.)  But I do have some Canadian readers.  And like I said in my post earlier this week, just because Down syndrome Awareness month is over, doesn't mean that we stop trying to raise awareness. 

Okay, that said.  I still don't have a whole lot else to say about Down syndrome.  But as usual, I have cute pictures, and I can always come up with something to say about Kennedy.  Today she continued to prove what a diva she is.  She was totally willing to practice her crawling skills for me this morning.  In fact, she even got up on her knees on her own.  This is huge progress people.  Until today, the only time she'd get on her knees was when she was sleeping!  Of course, when she tried to move, she face planted.  Fortunately, we have a squishy new exercise mat, so her face plant was softened. 

Mom!  Don't take my picture.  I have bed head from my pigtails!  I don't care if I AM on my knees!

How the heck am I supposed to do this mom?

Today was EI.  We met Amanda at the park, in hopes that it would make for a more pleasant and productive session.  Kennedy loved it.  She was talking away and enjoying every minute of Amanda pushing her on the swing.  Then she took her out and actually tried to do something with her, and Kennedy threw a fit.  

Hey mom, that's my friend swinging next to me.

And these next two pictures made me realize how big she's getting.  Seriously, who said my baby girl could turn into a little girl so quick?