Step UP for Down Syndrome Walk 2010!

• Who: Caydence's Friends and Family
• What: The MADSS Step UP for Down Syndrome Walk
• When: Saturday October 23rd, 2010 from 9:30am - 1:00pm
• Where: The Alliant Energy Center Exhibition Hall
• Why: To show your support for Caydence and raise money for the Madison Area Down Syndrome Society

It has been a big first year for Caydence and what a better way to celebrate than to Step UP for Down Syndrome! This year the Step UP for Down Syndrome Walk will be held on Saturday, October 23rd at the Alliant Energy Center Exhibition Hall. We are inviting all our friends and family to attend. There will be music, mascots, bounce houses, a balloon artist, face painting, children's craft area, a silent auction, lunch and of course the ceremonial walk! There has been less than ideal weather the past few years, so this year the walk activities will be held indoors, but as long as the weather cooperates, the walk itself will be held outdoors. :)

 

Last year Team Caring 4 Caydence raised a whopping $2,429.00. So this year our team goal is to raise $2,500! All money goes towards the Madison Area Down Syndrome Society which is an organization that is very dear to us.
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To join us on the day of the walk you can become a Caring 4 Caydence Team Member by registering online. The cost is $20 per adult walker and $10 for walkers 12 and under. Make sure to register by Oct 1st to be guaranteed a Step UP for Down Syndrome Walk T-shirt!

 

*Go to our fundraising page at: http://www.firstgiving.com/caydence

 

*Click on "Join this team"

 

*Also, make sure to print off the Free Parking Pass available at: http://www.madss.org/ before the day of the walk and bring it along :)
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If you aren't able to attend the walk, you can still support us by sponsoring Team Caring 4 Caydence!

 

*Simply go to our team fundraising page at:
http://www.firstgiving.com/caydence

 

*Click on "Sponsor Us Now"

 

We appreciate any amount you are able to contribute! from $1 to $1,000,000 :)
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You can also support Team Caring 4 Caydence by raising money for the Madison Area Down Syndrome Society!

 

*You can refer your friends and family to our online fundraising page http://www.firstgiving.com/caydence

 

*If you are already a registered team member you can start your own fundraising page on Firstgiving.

 

*And you can also raise money offline. A printable pledge form is available at: http://www.madss.org/ You can print it off, along with the Walk brochure and pass it around to your coworkers, friends, and family. All checks should be made out the MADSS, or Madison Area Down Syndrome Society.
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We're looking forward to having a great time and hope you all can attend :)

 

<3 Jenny, Josh, and Caydence

Defying the Odds

This morning I got a message from Josh's cousin Chad...

"Hey just started my first day in college and in my education class we have a couple of senior students that help the professors. One of the senior students has Down syndrome and she said that even though she has that difficulty, it doesn't stop her and she is almost done with finishing her major in art education and is on her way to becoming an art teacher. I love her in the class you know, because she has a great personality and brings great energy to the class, that I like. So I just wanted to let you know that because looking at Caydence, I just see her and have so much love you know and seeing that in the class room and you don't hear of that that often is just so great. So I wanted to just throw that to you and send my love.
Love Chad"

I was so glad he shared that with me. Many years ago people believed children with Down syndrome couldn't learn and were useless, so they just left them in their cribs and hid them away. Many were placed in institutions. In fact, in some countries, many children with Down syndrome are STILL placed in institutions.

As advances in medicine came about, like specialized surgeries, hearing aides, feeding tubes etc., doctors were able to help many of the problems that children with Down syndrome are born with and thus prolonging their life expectancy immensely. In 1929 the life expectancy of a person with Down syndrome was 9 years. Now a days it is not uncommon for individuals with Down syndrome to live into their 50's or even older. The oldest person with Down syndrome is currently around 82.

As these children with Down syndrome began to live longer, people began to realize that these children can learn, it just takes them a little longer. And with therapy and more individualized tutoring, they can learn even better. The capabilities of people with Down syndrome are still being discovered.

Unfortunately the problem plaguing most people with Down syndrome later in life now a days is alzheimer's. For some reason, yet to be discovered, people with Down syndrome are much more apt to develop alzheimer's. And they do it at an earlier age. Usually in their 40's and 50's. Hopefully they can figure this out in the future and a cure can be found.

I love hearing stories about individuals with Down syndrome who have defied the odds. So thanks for sharing Chad :)

What's new wiff Caydee?!?!?!

Yesterday Caydence had her 1st echo and cardiology appointment since her surgery in December! She was amazingly good for her echo. Usually she squirms everywhere and doesn't stay still. But she was sooo good this time. She just laid on the bed and let the technician do her thing. I was amazed :) YAY Caydence. Then later we met with her cardiologist. She still has a very small VSD (hole between her bottom chambers). But it is very little, they can't even hear it with a stethoscope. It's something that they will keep an eye on. It may close on its own as she grows. If it doesn't close they will wait until she is much older to do another surgery.

Hopefully it will close :) She actually doesn't have to see the cardiologist and have another echo for a whole year!

The big question that we hear at least three times a week is "Is she eating yet?!?!?". I have to admit, this question drives Josh and I CRAZY!!!!!! She will eat someday, but it's gonna take some time. Like a year or two... or more! Progress is very very very slow!!!!

For a while Caydence was taking about an ounce of baby food a day. Then when we switched her to a toddler formula, she started throwing up a little which side tracked her and she didn't want to eat anymore. It doesn't help that she is getting 4 molars, 1 or 2 bottom teeth and a couple upper teeth all at once.

The good thing is that she is fine with putting things in her mouth. Mostly her fingers and toys. In order to make eating "fun". We have stopped trying to spoon feed her for awhile and instead just doing a lot of oral motor stimulation. Then before her baths, she gets to sit in her bumbo chair in the bathtub and play with her food. When she puts it in her mouth herself, she is ok, she still spits it out a bit, but the important thing right now is getting her exposed to tastes and not worrying about the amount she is taking in.

Since we've been using her new hip helpers, she has definitely been keeping her legs closer together. And the best part is that she doesn't seem to mind wearing them :)

Nothing much else is new. It is finally cooling off here in Wisco, so I'm looking forward to taking Caydence on walks again. On a side note, for those who haven't heard already... Caydence is going to be a big Sister! It was a little unexpected, but we are very excited :) I am currently 11 weeks and the two ultrasounds we've had so far, show that everything is looking good. The little bundle is due to make their appearance around in early March 2011. However since Caydence came 4 weeks early, who knows... maybe it will be in February, we'll just have to wait and see :) Stay Tuned <3

BTW - If anyone has an exercise ball they aren't using anymore, we could really use one for Caydence's therapy!

I'll leave you with a cute pic of Caydence and Daddy <3

The Down Syndrome Creed

My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

Save the Date!

The Annual Madison Area Down Syndrome Society's Step UP for Down Syndrome Walk is scheduled this year for Saturday October, 23rd. This year there is both indoor and outdoor space reserved in the event of inclement weather. Last year it was freezing and we actually had flurries! We are inviting all our friends and family to come walk with us, so save the date and stay tuned for more information :)

Oprah

Me and my fellow parents of children with Down syndrome are writing the producers of the Oprah Show in order to encourage them to create a show devoted to Down syndrome. A few parents have written in the past and not heard a response. Now we are banding together to make this happen.

Here is the letter I sent...

Dear Oprah Show,

My fellow parents of children with Down syndrome and I are banding together to educate the public about Down syndrome. We would love if you would help us in this effort by devoting a show to our cause. Did you know the abortion rate for babies diagnosed with Down syndrome prenatally is a staggering 97%?!?!?! It makes me physically sick to think about this statistic. You see my first baby was stillborn at only 28 weeks gestation. I later found out it was due to an underlying blood clotting disorder, I wasn't aware I had. When I got pregnant again 8 months later, I was overjoyed. At my 19 week ultrasound I found out my daughter had a heart defect (AVSD). It is very common in babies with Down syndrome. We were told our baby had a 60 - 70% chance that our baby had the genetic condition. The only way to know for sure was to have additional invasive testing. My husband and I immediately declined the testing. If she had Down syndrome that was fine with us, she was our baby. Meanwhile, we decided to educate ourselves about Down syndrome in the event our daughter had this condition. We learned a lot, and when our daughter Caydence was born in June of 2009 and we found out she did have Down syndrome, we were prepared. It seriously didn't phase us; after losing our first daughter, we realize how precious life is and we were just so happy to have her with us. Sadly, many women who find out their child has Down syndrome are devastated and often go through a mourning period. The social stigma of Down syndrome is deeply rooted in our society. Now, as parent of a child with Down syndrome, I want to devote my life to changing this social stigma.

If you would like to help us in our effort, please submit your letter at: Oprah Show Submission Site

Sum Sum Summertime!

Well, Caydence had her huge birthday bash last month. We had LOTS of friends and family come to help celebrate. Here are some pics from her big day...

She did pretty well with her cake. She got a couple tastes in. I am purposely omitting the pictures where she got a little too much cake in her mouth and starting crying/screaming. Luckily she quickly recovered once we sung her favorite song "If you're happy and you know it" :)

Caydence has been doing very well as of late. Her newest trick is sitting unassisted and she is getting better at it every day. The main thing she is lacking is the ability to hold herself up with her arms. I try to work with her, but she just doesn't like putting weight on her arms.

We took Caydence to the big 4th of July Parade a couple weeks ago. She had a really good time before the parade started, but she wasn't a big fan of the honking trucks, fire engines, and marching bands. So we ended up leaving after only a half hour. Maybe next year :)

Right now we're waiting for her hip helpers to come in the mail. They are spandex shorts with the legs sewn together. Caydence often sits with her legs wide apart and bent like a frog. The hip helpers will help her bring her legs together and kind of straighten out, which will help with crawling, standing, and eventually walking. Her OT made her a pair of legs bands out of a piece of elastic, but Caydence likes to take them off. The hip helpers definitely won't be as easy to remove. I'll be sure to post a pic of Caydence in her nifty shorts as soon as they arrive :)

Last week Caydence developed a blister under/next to her button (feeding port). This weekend it kind of deflated and last night it was bleeding a little. So this afternoon we're going to the GI doctor to have it looked at. We're thinking that she is just out growing this button, so she needs a bigger one. We'll see. I'll keep you posted :)