{31 for 21} Photo Dump

We have had an exhausting weekend.  Exhausting, but wonderful.  However, I don't have the energy to write tonight, so here are all the photos I've been promising.  Definitely more to come tomorrow on the Step Up For Down Syndrome Celebration, ad Kennedy's new friend.

Giving Mr. Bear kisses on the road trip.

 

 Forget drawing, this helps my teeth. 

Oooh mom, I love the crayons you made me.

I am such a daddy's girl.

I'll give you five Great Grandma!

Hey Aunt Michelle, I like your bar!

This is a serious conversation.

Grocery shopping at Aunt Michelle and Uncle Sam's!

I'll push brother in the cart, like mommy pushes me.

Thanks for all the great toys Aunt Michelle!

My perfect family.

Where's Kennedy?!

Peekaboo Kennedy!

Quality time with Grandma and Caleb.

Yes, you read it right.  I was born Princess.

And here I come, so watch out!!!!

 \

I'll play with you. But no you can't have your mail back.

Giving Caleb kisses!

{31 for 21} Preparing for Change (And a Question Answered)

There was a time (a very brief time) that it felt like Down syndrome was a huge part of our lives. Now, not so much. Often times, I forget about it. Kennedy is who she is regardless of how many chromosomes she has. She is amazing, beautiful and perfect.

As I've mentioned a few times, we're preparing for a big move. This is definitely a bigger part of life than Ds. It's exciting, fun, overwhelming, scary and a little sad. It's exciting that we'll have more time with daddy, and that we'll be closer to family. The house hunting process, combined with finding new physicians and therapists is definitely overwhelming! And that part is a little scary too. We have worked hard to get such a great therapy team, and I'm a little worried that it may be a struggle again. And of course, I'm sad to leave all of our friends and family in Florida. We have made wonderful friends, and I'm grateful to have them and for the support that they have provided through some of the most challenging times for us. I hope that we all stay in touch, and can continue our friendships over a longer distance. Don't worry - we'll be back for plenty of Florida vacations.

This visit to North Carolina was a great reminder as to how wonderful it will be to be near family again. Seeing my grandmother meet her great grandson for the first time, and to watch her excitement at each of Kennedy's steps was wonderful. I'm looking forward to more of these memories. I'm also looking forward to meeting new friends, and participating in new playgroups, etc. Tomorrow is the Triangle Down Syndrome Association's Step Up For Down Syndrome Celebration. I'm excited to meet new people, including Kennedy's Internet pal, Ben, and his mom! I'm so excited to have a friend so close, who has a child around Kennedy's age, with Ds.

This all ties in with a question from one of my readers. She asked:
"How do people react to Kennedy when you're out and about? Do you ever get stares or strange comments? I'm pretty sure that Kennedy's megawatt smile would melt anyone immediately, but have there ever been any negative reactions? And how do you/would you deal with that?"

I do get a lot of stares when we're out and about, but it's almost always because miss Kennedy is so completely adorable. There have been a few situations where I've felt a little uncomfortable, like people are staring. Especially when they don't talk to us. I like to think that it's because they are curious or uneducated. I really don't know if people always realize that she has Down syndrome. Sometimes people act surprised that she's not talking or walking yet, and I have to explain the delays associated with Down syndrome. Often times they tell me they can't tell she has Ds. It does make me a little sad when we have people stare at us. It makes me wonder if they are staring because they are curious, because she's "different" to them, or for another reason. I typically ignore the stares. I've only had a rude comment once or twice. I chalk it up to ignorance, and try not to let it bother me. I kindly inform them just how wonderful and perfect she is. I am her advocate and I will always stand up for her. I've also confronted people for using the r-word. Those conversations don't always end well.

I have some wonderful photos from the past few days, and I'll be sharing them over the next few days, along with details and photos from tomorrow's celebration.

{31 for 21} Blogging Fail

Today is a blogging fail.  And tomorrow likely will be as well.  But in Sunday I'll have a lot to say, a lot of pictures and more time to deal with it all.  In the meantime this is a basic post.

It's Down syndrome Awareness month.  I would love to answer any questions you have about Ds, Kennedy or our life.  Just leave me a message in the comments section!

{31 for 21} Heart Defects

Statistics show that 40-50% of children born with Down syndrome also have a heart defect. Kennedy's heart surgery was one of the hardest things we have ever been through.  I am so thankful to be at that point in our lives.  I've spoken with many moms recently as they prepare to go through similar experiences.

I haven't had a chance to finish my post about Kennedy's AVSD repair, but be sure to check out the Page I have dedicated to her repair. 

I promise, I'll post some cute photos soon.

{31 for 21} Showing Off

Over the past 19 months I've had my ups and downs with therapy providers. I feel very fortunate that we have a good group of providers right now. That wasn't always the case, and I've had a few horrible experiences to get to this point.

Last December was our first visit to the Hope Haven clinic in Jacksonville, Florida. We had a wonderful experience there last year and I was eager to go back and learn more this year.

We had the opportunity to spend an hour each with a Physical, speech and occupational therapist. They each evaluated Kennedy, provided feedback about her progress since last year and gave us some advice on what we can work on over the course of the next year. There was also an hour and a half educational session in which we discussed other more specific activities and ways to promote learning, future choices and considerations regarding schooling, and our upcoming move to North Carolina.

We all know that Kennedy doesn't always show off or perform her skills for the right people. I came armed with videos to show as evidence that she's doing the things I'm indicating, and in hopes that they could at least provide some feedback, based on the videos. Fortunately, there was no need for them. Kennedy took the opportunity to show off all of her skills to each of the therapists, despite being very tired halfway through the morning. By the time we reached PT, she was exhausted and over it. She still managed to show off her walking skills before she declared the performance over and demanded an end to the day. It was a long day for her, but she was a rock star as always. We left with some new ideas and I felt a lot more confident with my efforts. I look forward to receiving their full report in a few weeks.

31 for 21 has brought me back to the blogging world, and I'm determined to start blogging about the different activities that I'm working on with Kennedy.

After our exciting morning at Hope Haven hit the road for the remainder of our road trip. Apparently Kennedy had a talk with Caleb about how road trips are supposed to go, because they both did excellent. Be on the lookout for a lot of cuteness. We have plans for fake grass, time with family, pumpkin patches, Down syndrome celebrations, parks and play dates!

{31 for 21} A Note From Kennedy

Hi there blog reading people!

Mommy, daddy, Caleb and I are on vacation again.  Mommy seems like she's been a little stressed lately and sometimes I hear her say she's going crazy.  I'm not sure what she means, but I figured I'd give her the night off from blogging.

I'm not sure what mommy has been telling you all lately.  I hope it's all good things.  She keeps telling me that I'm really becoming a toddler these days.  I don't know what's so difficult about that but it seems to stress her out some days.  Or maybe several times in one day.  Usually when I'm pulling toilet paper off the rolls.  Or emptying spices out all over the floor.  Or throwing the clean laundry.  Or throwing my food onto the wall.  Or when I try to climb out of the shopping cart.  And especially when I give her a hard time about going to bed. 

I guess I do spend a lot of time doing things to get me in trouble.  Good thing mommy usually takes a picture and laughs.  Or sometimes she shakes her head and tells me no.  Then I lay on the floor and scream.  Mommy says that's me turning two and that it's a good thing I'm so cute.  I'm just trying to get my point across, really.  That's all.

I also like to make mommy look like a fool.  She's been telling Miss Holly, my physical therapist, how good I'm doing at walking.  So today, during my PT session I sat on the floor, and crawled around.  I did the same things I've been doing for many months.  I didn't even show Miss Holly how I stand up on my own.  Tonight at the hotel I was walking all over the place though.  Mommy said that I'm a little stinker and I'm trying to make her look bad.  She said that she's going to keep sending my therapists videos of me doing everything since I don't perform for them.  I tried to tell her I do.  I talk a lot for my physical therapist and I do a lot of walking for my speech therapist.  What's the problem?

Mommy says tomorrow is a big day.  I'm going to see my friends at Hope Haven.  Last year when I saw them I wasn't crawling yet.  Now I'm starting to walk.  I probably won't feel like showing them that though.  I also was just learning to feed myself.  Now I'm a pro, and refuse to let other people feed me most of the time.  I also wasn't a big sister yet.  Tomorrow I'm going to show off my baby brother.  That's probably all I'll feel like showing off. 

Anyway, I guess I should get to sleep.  Mommy says I need to wake up early to go see my friends.  I'm sure she'll report back, and who knows, maybe I'll surprise her and show off.  Otherwise she can show the videos and pictures.

Like this video of me walking in the hotel room.

And here are some pictures from the first day of our trip.  I think we're going to have fun!

Are you ready for your first road trip Caleb??

My reward for being so good, was dinner and games at Dave & Buster's!

Daddy and mommy helped me play!

I love anything with buttons!

This is the bear I got with my points.

Haha. Bed? That's what you think!

I have to kiss my bear goodnight first.

I taught my brother how to relax on hotel beds.

{31 for 21} Prenatal Testing

Everyone has their own beliefs on prenatal testing.  I'm not one to judge others for the decisions they make, as long as they make an educated decision based on facts.  There's two very common questions that I usually get.  1) Did you know about Kennedy's diagnosis before she was born?  2) Did you have prenatal testing with Caleb?

When I was pregnant with Kennedy, we made the decision not to have the genetic screenings.  It would not have changed anything, and we didn't want to worry about the chances of "false positives."  When she was born and the midwife explained that she thought Kennedy had Down syndrome our life was turned upside down, or so we thought.  Initially, I regretted our decision not to have the screening.  I wished we had known, in order to mentally prepare.  And then my midwife told me that we wouldn't have been able to have her at the birth center.  If that was the case, I was glad I didn't know.  The first few weeks were tough.  It was definitely the happiest time of our lives, but also a period of acceptance. 

When we got pregnant with Caleb, I already knew how amazing life was with Down syndrome.  I knew there was a slightly higher risk of having another child with Down syndrome.  I wasn't scared of Down syndrome.  I was however scared of the medical complications that could go along with it.  We made the decision not to have any testing, with the goal of having a home birth.  Our bubble was burst at one of my first prenatal appointments when the midwife told us that we would have to consult with an OB and have her approval because of Kennedy's history.  The doctor recommended an AFP screening and a level II ultrasound, before I could be approved to continue care with them.  The AFP screening scared me.  I didn't want to deal with odds or the "unknown."  But I also knew, no matter what the "odds" were, it wouldn't change things and I wouldn't have an amnio to confirm a diagnosis.  Fortunately, the MaterniT21 test was available, somewhat locally.  We traveled 2 hours to see a Maternal Fetal Medicine physician that ordered the test.  It was a long two weeks waiting for the results.  Like I said, the idea of another child with Ds didn't scare me.  But the idea of juggling Kennedy and a child in the NICU or one needed open heart surgery did scare me.  I was able to devote every second of my time to Kennedy, and I knew that if we had another child with significant medical needs, it would mean balancing and splitting time between them.  That scared me.  I was also scared of how a positive result would impact our plans for the birth.  After having Kennedy in a birth center, I couldn't imagine a hospital birth or the interventions that would come. 

The MaterniT21 test comes with great controversy.  Some people believe that it will eliminate the population of individuals with Down syndrome.  I don't necessarily believe that.  Even if the test becomes more readily available, there will always be people who recognize the value of life, regardless of how many chromosomes there happen to be.  Personally, I'm glad that I was able to access non-invasive testing, and avoid the stress of the unknown, or jeopardizing my home birth plans. 

{31 for 21} Celebrations

I had a much more serious post in mind for today, but decided to take a different approach. I have 24 more days left this month so there's plenty of time to fit it in.

One of the first things other parents of children with Ds told me was to throw away developmental charts and recognize that Kennedy will do things on her own time. She works a lot harder at everything she does. There's a lot more steps to learning things and achieving milestones. Each milestone, no matter how big or small, is celebrated in a big way!

Kennedy has been taking several steps completely unassisted, and I've been trying to capture them on video for a few weeks now. I finally caught a few! Unfortunately for me, Kennedy is pretty stubborn and only does things when she wants. Sometimes she can be bribed to do things. When she learned to crawl, we used Cheerios. But bribing her to walk doesn't work so well. So I'm left trying to always have my phone at hand, ready to record. Seems simple, right? Yeah, not so much with a busy toddler and hungry baby. I spend many hours of my day chasing Kennedy while nursing Caleb. Who can keep a phone or video camera on hand too?

Every time she takes steps I try to make a huge deal out of it, in hopes to encourage her. Our physical therapist says she has everything she needs to be a walker. It's just a matter of her wanting to do it.

I'm blogging from my iPad, so please excuse my ridiculous formatting of the video and photos.

Kennedy's Independent Steps

Hanging out with the monkeys at the zoo!


The zoo was far too too exciting for someone. She was asleep in an hour.


Stuck. Head first. In the toy bin. Kicking her feet. And yes, I took this photo before rescuing her.

{31 for 21} Dreams

As a parent you always have dreams for your children. One thing that I realized when Kennedy was born is that her dreams may be different than what I always imagined. And then it hit me that regardless of how many chromosomes your children have, their dreams may be different than what you imagine.

I love to see news stories about individuals with Down syndrome making their dreams come true or succeeding in something that they have dreamed of. I think it helps raise awareness. At the same time, part of me feels that these individuals are just like everyone else, and that making it news worthy points out that they are "different." Either way, I'll enjoy the stories and imagine Kennedy achieving her dreams 5, 10, 20....years down the road.

I don't think I ever noticed the prevalence of the stories before Kennedy was born, but October is always a big month to hear about students with Down syndrome being crowned as homecoming king or queen. This year has been no exception, and the month is just beginning.

Homecoming Queen in Louisiana

Homecoming Nomination

Another Homecoming Queen!

Homecoming King

Another Homecoming King!

These stories warm my heart and brings tears of happiness to my eyes.

I promise, I'll have lots of cute photos tomorrow and the coming weeks. Today was the end of a massive house project so my camera (and even my cell phone) haven't had much use!

{31 for 21} Toddlerhood and Down Syndrome

Kennedy set a new record last night and took eight steps on her own. She's far from toddling on her own, but that's not stopping her from getting into everything. I've spent the past two days working very hard to get the house prepared to be shown. And Kennedy spend the last two days frantically crawling behind me, tearing apart everything. All of the toys I packed, she unpacked. All of the trash I through away, she emptied. The clothes I bagged for Goodwill, she emptied and put around her neck. Despite the fact that Kennedy doesn't do everything typical toddlers do, she isn't lacking in the ability to make a mess, get into trouble or throw tantrums when the word no is used. She is definitely a typical toddler in my mind. Just another example of how children with Ds are more alike than different.

Stay tuned tomorrow when we return to our regularly scheduled blogging. Right now I'm off too tackle my "to do list" and clean up the other projects I already completed!