Wednesday, December 26, 2012

Merry Christmas!

I hope that everyone had a wonderful Christmas!  We have had a busy but fun week!  We did a lot of shopping, and had a lot of craft time.  Kennedy enjoyed making cards with her thumb prints, and salt dough ornaments for daddy, and her grandma's.  I made her a felt tree with ornaments to take off and rearrange how ever she wanted.  She played with it a little, but mostly ran around with them.  After all, Kennedy doesn't care much for anything that requires her to be stationary for more than 90 seconds.  I really enjoyed making new traditions with my babies.  And although I haven't been able to teach Kennedy to make animal sounds, I did teach her to say, "Ho ho ho!"  She has walked around saying ho ho ho all week.  And it's the cutest thing ever.  Unfortunately, it seems our new Christmas tradition is for Kennedy to be sick.  Fortunately she was in a great mood, but had snot running down her nose in most photos.  Christmas Eve was busy with last minute errands and baking.  Kennedy had a great time helping me bake and decorate cookies.  She stirred up a bowl of sugar and then tossed it behind her.  We kicked off Christmas morning with cake butter pancakes and got right to work with gifts!  Kennedy was greeted by a new table and chair set on the patio, a kitchen set and a Servin' Surprises Table.  The kitchen was a HUGE hit.  She scored tons of puzzles, Little People sets, dolls, their accessories...the list is endless.  As you'll see from the pictures below, Santa was very good to everyone!  It was an amazing Christmas!  I feel truly blessed to have a wonderful family and such amazing children.  It was so much fun to see their faces light up, and I know Christmas will only get better each year.

In an effort to get this blog post done while Kennedy is napping, I'm going to wrap up with a lot of pictures from the past week.

Yes, I know I'm cute.

I have all the attention on me, before my cousin's performance starts.

Giving brother kisses!

Hi Facebook people!

Baby's First Christmas!

Mom, this coat thing sucks.

This felt tree is cool, but not as cool as the real tree.

I'm ready to bake mama!

How about these sprinkles mom?

Can you put extra in?

"Ho ho ho!  I'm baking!"

It's cool mom, I'll just sit up here.

Can we make cranberry bark next?

Really mom?  I can decorate this?

Oh, you didn't want me to eat it?

This is yummy mom.  More please?

Ho ho ho!  Santa will love this!

Checking for Santa!

Ho ho ho!  Better get the windex mom!

Santa came!!

Baby's First Christmas!

The little chunky monkey!


For me???

Want some coffee dad?

Sure Grandma, I'll pour you a cup.

Who's on the phone?

I'm mixing up some scrambled eggs mom.

Running for the gifts!!!

Diving right in!

 I love it Grandma!

She ran to the door with her new keys and said, "Bye!"

This is cool mom.

My friend Mickey!!!

I love you baby.

Caleb made me this???

Giving "Stitch" kisses.

Weeeeeee go faster Grandma!

Talk about photo overload.  I'm determined that I'll be better about blogging in the new year! 

Tuesday, December 25, 2012

The Lost Post - Photo Bomb

I thought that once we moved and we got settled, I would be a better blogger.  But as it turns out, that's not the case.  Maybe after the holidays?  Yes that's it.  After the holidays my blog will be less neglected.  In the meantime we've been busy preparing for the holidays and spending time with family. In fact, I started writing this post several days ago and I guess I got distracted.

Our Disney vacation was a huge hit and one that came with many memories to cherish forever.  And it may be a new tradition.  We loved it as much as the kids did, and I know that as they get older they will love it even more.  We visited Hollywood Studios, Animal Kingdom, Magic Kingdom and Epcot as well as Downtown Disney.  Kennedy was amazed by the fireworks at Magic Kingdom and loved the flying Dumbo ride.  There was a "dance club" where she was able to dance with Chip and Dale and she had so much fun.  Her favorite part of Epcot was the music in each country.  Downtown Disney was full of excitement.  They had several bands playing Christmas songs.  One female group was dancing and singing in an area of fake grass.  It was a good wide open space and the crowd was far enough away, so I let Kennedy get out to show her moves.  She shook her little butt for all of Downtown Disney to see.  She was adorable and everyone thought so.  She danced and danced, running around like a maniac.  She attracted quite a crowd and before you knew it she was partying it up with a huge group of kids. 

Last weekend we attended our niece and nephew's holiday church performance.  Kennedy was a huge hit before the show.  She ran the halls of the church giving everyone her big grins and giggles.  Then she hugged and kissed a little girl, who hugged her back.  Then she kissed a boy.  Twice.  In church.

She hammed it up at the mall yesterday.  Everyone was stopping to talk to her or tell me how adorable she is.  Even during the 40 minute wait to see Santa.  But then once we put her and Caleb on Santa's lap, she saw it as an opportunity to get off his lap and run.  So the photo is of Caleb pouting and Kennedy trying to escape.   Photos of this to come in the Christmas post.

And here are the Disney photos you've been waiting for I've been promising.  And thanks to Blogger, they are no longer in order.  Or maybe that was my computer's fault.

Meeting Daisy at Epcot.  And giving her kisses.

Hollywood Studios

Meeting Jake from the Neverland Pirates.

Our first time meeting Mickey.

Riding the Dumbos.

Dance party at Magic Kingdom!

Waiting for the spectacle of lights to begin!

Dancing with Chip & Dale.

The most amazing Christmas display. Ever.

Dance party!!!

 Meeting Stitch!

Amazed by the fireworks at Magic Kingdom.

Giving Stitch kisses!

Dancing with daddy at Downtown Disney.

Stitch was definitely her favorite!

Can you tell she had fun?  Look at her trying to snap her fingers.

Giving Mickey kisses!

Dancing. Again.

Hanging with Pluto!

Dance party!!!!!

Watching the Animal Kingdom parade!

Snapping her fingers to the music!

Christmas post coming soon.  Like tonight or tomorrow.


Friday, December 14, 2012

The Downside of Starting Over

I had a few fears when it came to leaving Florida.  We finally had a really great therapy team for Kennedy.  I was already feeling anxiety over the transition, and we hadn't even set a date to move.  I heard mixed things about North Carolina's Early Intervention program.

Fast forward to this week.  All of my fears and nightmares have come true.  We had Kennedy's evaluation with the Children's Developmental Services Agency.  I'm not sure that it could have gone any worse.  Kennedy was not in a showing off sort of mood.  She was her usual happy bad social self.  So when three strangers came in to the house she greeted them and proceeded to run, dance, smile, and play games with them.  She explored their "toys" aka tools.  None of what they had were actually toys.  In fact, they gave her real dimes to put in a real bank.  Which she did.  But when they handed her a Nerf ball she proceeded to investigate it, squish itt and check out the part that had a bite out of it.  She didn't throw the ball.  But she did throw her ball 5 minutes later.  Little did I know- tat didn't count.  The evaluators had to see her complete certain tasks. With THEIR tools only.  So, even though she put blocks in her shape sorter, she didn't put THEIR blocks in THEIR cup.  She also didn't stack their blocks in the form of a train, and push it across for floor while saying choo choo.

At the end of the evaluation they "freed her" - their terms not mine - to play.  She did not succeed at being a circus animal who performed tricks on command.  They told me how "severely delayed" she is.  I argued that their methods of evaluating would not provide an accurate depiction of my child's abilities.  I'm not one to exaggerate things she can do, especially state evaluators.  In Florida I usually had to exaggerate the opposite way and minimize what she could do.  I KNOW this evaluation was ridiculous and seriously flawed.  I know she's not as severely delayed as they make it out to be.  But there's something upsetting about three strangers making these comments about your daughter that's very upsetting.  I had to hold back tears.  We work so hard - she works so hard - and these women minimized everything she did.  She turned the pages in the book, one at a time but only used one hand.  She walks, but doesn't walk up the stairs.  On the plus side, she scored above average in social emotional skills - I'm not surprised, this girl is a social butterfly. She also scored on the higher end of average in self adaptive skills.

The icing on the cake was their recommendation for services. Physical therapy, speech therapy, occupational therapy and developmental therapy every week.  Our insurance benefits would max out in 3 months, leaving us with the cost of 100% of the therapy, at roughly $100 per hour..  They justified this by saying we could obviously afford it, based on the home and neighborhood that we  live in.  I was shocked.  I explained that I would NOT be agreeing to their recommendations based on such a flawed evaluation.  I made the determination for which therapies we would like Kennedy enrolled in, based on our last trip to Hope Haven and conversations with out therapists before we left Tampa.

I know Kennedy is amazing.  She is a super star.  I could not be more proud of her.  I was especially proud of her when they stood up, and she said, "bye!!!" and proceeded to walk them to the door while waving and saying "bye" over and over again!  Apparently I wasn't the only one who had enough of them.  They were barely out my front door when I burst into tears.  It's days like that when I really wish Kennedy could just be a kid, and not have to deal with things like therapy, evaluations or working so hard to achieve milestones that come so easily for others.

Full Disney recap and photos to come in the next few days.  :)

Tuesday, December 11, 2012

Photos. Finally.

We have returned home from Disney.  It was an amazing trip. One I'll update more on over the next few days.  In the mean time, I have pictures.  Lots of them.  And once I get done with the explosion of photos and Disney updates, we'll get back to real blogging.  I promise.  No more excuses.  That is, if I still have any readers.

Here's Thanksgiving photos.  Note the size difference between Kennedy and Caleb.  No, I didn't photoshop anything.  And no, your eyes aren't playing tricks on you.  They both wear the same size diaper.  My 21 month old is wearing 18 month clothes and my 4 month old is wearing 9 month clothes.  He won't have his well baby appointment until Wednesday but I'm fairly certain there isn't more than a 2-3 pound difference between them.







Tuesday, December 4, 2012

Checking In!

Life continues to get in the way of my blogging. But it's a good thing. We're currently enjoying a Disney vacation! The kids are having a blast, and so are we. Although we're considerably more tired than they are. We've seen Hollywood Studios and an amazing Christmas Display! By far one of Kennedy's favorite moments. We had breakfast with Mickey, Pluto, Lilo, and Stitch. Kennedy enjoys meeting (and kissing) all the characters. She's not shy or scared at all! Caleb absolutely LOVED meeting Mickey! He laughed, smiled and talked to him. After Kennedy kissed Pluto, she pulled his whisker. We also visited Animal Kingdom. Kennedy's favorite part was the parade. She was in awe!

I have tons of photos, and I still owe you all Thanksgiving photos. my computer is somewhat operable again, but we can't seem to access the wireless Internet. So be on the look out for a massive photo dump in the coming days! Just as soon as I upgrade Blogger...

For now, I'm spending my evenings chasing Kennedy away from Papa Sam and Grandma Grace's Christmas tree. So thankful to be able to stay with them, and for their wonderful hospitality. Oh, and for allowing our little hurricane to take over the house and keep them up past their bedtime!

Wednesday, November 28, 2012

Technical Difficulties

I'm currently living in the land of electronic nightmares.  My MacBook has reached its' capacity and our PC is no where near capacity but also not anywhere near functioning properly.  And to top that, tonight Blogger told me I'm out of storage space.  All too many technical difficulties to manage at the moment.  Please bare with me as I work through them.  I promise, I'll be up and running soon, with lots of adorable photos!!


Saturday, November 24, 2012

It Will Happen (Video Included)

I think it's safe to say that no matter what you may or may not go through in life, you have yours ups and downs. We've had a lot of major changes going on lately.  None of them really related to Down syndrome.  In fact, Down syndrome does not play a big part in our life.  But some days I do get a little sad about things.  Latley I've struggled a bit with Kennedy's speech delay.  Everyone is constantly reassuring me how wonderful she is doing, and I have no doubts about that.  I'm so incredibly proud of her.  But every now and then it hits me a little harder.  Especially when I see other kids her age doing things so easily when we work so hard. 

Today we made an impromptu trip to the park.  Because, well, I'm officially a North Carolinian now and I was thrilled that it was 65 degrees and a "warm" day.  So despite my middle of the night shopping trip induced exhaustion, we headed to Kennedy's favorite swing spot.  The same park that we had a play date at just over a month ago.  The very park that Kennedy took her socks and shoes off at, and refused to walk more than 5 steps.  Well, today, she didn't take her shoes off.  She spent the majority of the time we were there running around the grass.  She was wild.  She was happy.  She was the social butterfly that she always is.  The baby that wouldn't take more than 5 steps on her own outside of her home last month, was now RUNNING through the grass at the park.  I remember the days that felt like Kennedy would never walk.  And now, just three and a half months after she started standing independently for a few seconds, she's running!!!!!!!!!  When she took her first steps, I felt like we were far from having an independent walker.  But I think that we can officially call her that!  So although some days feel like Kennedy may never really "talk," I just have to keep reminding myself that she will get there. 

I should also mention that not only was Kennedy a social butterfly today, she was a stalker.  She was chasing after babies, toddlers and older kids, trying to play with their balls and run around with them.  Some of the kids were more receptive than others.  And none of the parents looked at me like I was crazy, as my toddler ran around kissing strangers.  I keep trying to tell Kennedy she should blow kisses to these people, instead of kissing them physically.  She isn't convinced.  Here's some video.

 
And one more.
 
 
Check back tomorrow for more photos.  I had computer problems that delayed my blogging tonight, but I have some seriously adorable photos.


Thursday, November 22, 2012

Settling In

After a few very hectic weeks I'm happy to say we made our move over the weekend and we're settling in to our new home nicely! The house is put together and we are enjoying some relaxation. And shopping. And preparing for Thanksgiving.

Kennedy is really enjoying her new home. Her favorite part is the stairs . She is like a pro going up them. I just need to teach her to go down them. One of the greatest parts about our move is that Kennedy has her cousins and family nearby. Yesterday one of her cousins came over to play with her for the day. I'm not sure who enjoyed it more. And it was fun for me to watch Kennedy playing with Hannah. I'm really looking forward to seeing Kennedy grow up with her cousins. I'm also excited to have a designated play room and a fenced in yard! We can finally play outside and not worry about alligators. The biggest downfall to North Carolina is the weather. We are still adjusting our wardrobe and neither of the kids like to wear hats and winter coats.

I'll have lots of photos tomorrow and a little more serious of a post! I hope everyone enjoys their Thanksgiving!

Tuesday, November 13, 2012

Blogger Fail. Updates.

It's a miracle that I made it through 31 for 21, because I haven't blogged in almost two weeks since it ended.  It's been a busy two weeks, preparing for the move, dealing with illnesses, teething, and appointments.  It's hard to believe that we're leaving in just 3 days.  In the past two weeks so much has happened.  We saw cardiology and were cleared not to come back for a year.  As I sat in their waiting room, watching Kennedy run around, playing with all the toys, another mom started talking to me.  She had a baby Caleb's age.  She was tiny.  When the mom asked me how old Caleb was and I told her, I saw that look.  The look that I remember giving off, when Kennedy was a baby and I met other kids her age, two or three times her size.  It made me think back to the bi-monthly cardiology visits that we were making for so long.  The time leading up to her surgery.  My life was centered around that.  And now here we are, not going back for a year.  Through the Mended Little Hearts program, I've also been speaking with other parents lately.  Parents of children who are having their AVSD repaired.  In answering some of their questions, it's occurred to me that something that was once the center of my universe are now fuzzy memories.  I actually had to reference my blog to answer some of their questions. 

In the past two weeks we've also said goodbye to a lot of friends.  Mostly people that I've met since Kennedy was born.  People who will always have a special place in my heart.  People who promised me that "it" would be okay.  The women that I cried to, in fear of what our future would hold.  The women who supported me through my struggle with breastfeeding.  The women who were present for the birth of both of our children.  The friends who have supported us through open heart surgery and helped us to celebrate Kennedy's milestones.  The friends who have recognized Kennedy for who she is and how many chromosomes she has.  I feel like we've come so far since we met them.  I distinctly remember meeting Amanda and her son at my first Mom's Group.  We compared horror stories from the NICU.  We had swim dates with the kids.  We were both pregnant with our second children at the same time, battling the fear of another NICU experience.  We welcomed our babies into the world just weeks apart.  I'll never forget when my midwife visited me in the hospital, and gave me Stephanie's phone number.  She told me she had a son with Down syndrome, and that she would love to talk to me.  I remember the first time we talked.  I cried.  A lot.  And I hung up, replaying in my head that things would be great, and that it gets easier.  She offered to take newborn photos of Kennedy.  And Kennedy flopped around in her flower pot, making it difficult to get photos.  And just a few months ago, she offered to do Caleb's newborn photographs.  And Caleb was equally as uncooperative. 

The hardest goodbye of them all was my Doula, Angie.  We reminisced about the day we met for the first time.  AS usual, I had 5,000 things going on and my mind was in 20 places.  The day that I made the decision to hire her, I had no idea just how huge that decision would be.  I never imagined that we would need the amount of guidance and support that we did.  Angie or "Aunt Angie" to the kids, has become a part of our family, and will hold a special place in our hearts forever.  Of all the "goodbyes" this was the hardest, and the most tearful. 

Today we said goodbye to our Physical Therapist, Holly.  Holly has been with us since January, and I owe her some credit towards Kennedy's success with walking.  She has given us some excellent guidance and has always praised Kennedy for how wonderful she is.  I know by experience that good therapists are hard to come by, so this was a difficult goodbye. 

Of course, with all that said, we're very excited about moving forward.  I'm ready to put all of the stress of the move behind us.  To get the kids rooms and play rooms set up.  To run around the back yard with the kids and not worry about snakes and alligators.  To see Kennedy learn and grow around her cousins and to watch the fun that they will have together.  Most importantly, to have more time as a family.  I'm looking forward to meeting new friends, and play buddies for Kennedy (and Caleb.)  I know that I will form new friendships with memories just as special as the ones I have here. 

Enough rambling.  Here are some photos from the past few weeks. 

Showing off my walking and my hair cut!

The nice therapist at Hope Haven told mommy to give me Twizzlers to help strengthen my jaw.  Mommy wasn't too thrilled with the idea, but this is one therapy I'm okay with.

Can we do this therapy more often?

My little brother is getting to be more fun.

Playtime with Grandma.

We went to vote.  It was exhausting.  I was being adorable, and all the people loved me.  And then I fell asleep because it was taking so long.

Even with two teeth and being sick, I'm still smiling.

What do you mean I can't wear tank tops after this week?

Come on mom!  I want more swinging.  See....I'm signing "more."

Bedtime, what?  No thanks.