Thursday, January 13, 2011

No... this blog has not been forgotten... just neglected :/

Sorry I haven't written for awhile. But I'm ready to get back on track! Although, I AM 32 weeks pregnant... so I'm sure I'll easily fall behind again.


The Step UP for Down Syndrome Walk was another success this year. Our team, Caring 4 Caydence, raised $2,210.00 for the Madison Area Down Syndrome Society! The only drawback was that we didn't actually walk. The day of the event it was cold and rainy outside, but luckily MADSS had reserved an exhibition hall at the Alliant Energy Center for the activities. There was music, activities for the kids, a silent auction, things to buy, and a not so healthy lunch. Hopefully next year the weather will cooperate and will actually be able to WALK :) Thanks to all our friends and family who came to support us... Kris, Louie, Conner, Autumn, Sabra, John, Gina, Adrianna, Evan, Peter, Charlie, Aunt Millie, Uncle Frank, Cassie, Ciera, Kyria, Melissa, Jim, Olivia, Betty, Josh, Melissa, Jena, Sara, Brent, Jean, Dale, Gram Gram, and Rod. Hope I didn't forget anyone!


Caydence has been doing very well lately. She loves books and has learned to put her nesting cups together in order, and she eats about 6-9 oz of pureed food a day now which is a HUGE improvement. December 14th was her Heart Day, (One year since her open heart surgery). She decided to celebrate by learning to sit up by herself. Now when she is playing in her play area she can role, sit her self up, play with a toy, lay back down, roll some where else and sit up again. We are VERY proud of her.

As I said earlier, I am currently 32 weeks pregnant with another baby GIRL! Her name is Sydney Elizabeth and is due March 8th. Although Caydence was 4 weeks early, so who knows when little Sydney bean is going to arrive. So far everything is looking good. At my 20 week ultrasound they thought they spotted an asd (atrial septal defect) in her heart, but a fetal echo came up clean. Sydney will still get an echo sometime after she is born though, just to be sure.



Have you heard there is a new blood test for Down syndrome? Instead of women having to have an amnio performed in order to find out if their unborn baby has Down syndrome, scientists have discovered a simple blood test that can be performed which can accurately detect Down syndrome. I am personally very anti amnio. 1 in 300 women lose their baby after having an amnio. That is why I have declined them the past three pregnancies. I have very VERY mixed feelings about this new test.

First of all, I think it is great that they can now prenatally detect a baby with Down syndrome by doing a simple blood test instead of risking the baby's life by performing an amnio. Many people want to be prepared and informed before they give birth to a special needs baby. That is totally understandable.
My big worry is that the termination rate for babies with Down syndrome is already over 90%. With a safe and simple test being readily available in the near future, I fear that someday there won't be fantastic little babies like Caydence in the world. There isn't enough education given to mothers who are given a prenatal diagnosis of Down syndrome. Instead, genetic counselors use scare tactics and paint a worse case scenario for the parents. Which freaks them out. Women should be required to meet with their local Down syndrome organization before choosing to kill their babies.

I feel like our society is getting closer and closer to Hitler's eugenics and creating the "perfect" human by weeding out any babies who have Down syndrome or other genetic conditions. How far is it going to go? Will there be prenatal testing someday for autism? ADHD? Homosexuality? Depression? Anxiety? Asthma? Allergies? I know I'm getting a head of myself. But every baby is perfect in the eyes of God. I think we should just let nature take it's course. I don't think it's up to us to decide whether a baby lives or dies.

On a lighter note... Caydence hair is now long enough to get into a ponytail. It kind of sticks straight out but it's still cute. Here's a few pics :)



Tuesday, October 12, 2010

It's not too late!!!!!!!!!!!!!!

Next Saturday, Oct 23rd is the Madison Area Step UP for Down Syndrome Walk. We are still looking for people to sponsor our team and also walk with us! Caydence has come such a long way since the walk last year and now it's time to celebrate! To sponsor our team OR register to join us on the day of the walk, you can go to our team page : http://www.firstgiving.com/caydence

Last week our friend Michelle took some awesome pics of us. She is an amazing photographer! Here are some of the great pics she captured...







To see more of Michelle's great photography, visit her website at:

In other news, Caydence is coming along with her feedings quite nicely. She still cannot drink liquids, but she is eating about 4 oz of oatmeal and pureed sweet potatoes a day. We may have to cut down on her tube feedings to make sure she's not getting too many calories. Is that a light at the end of the tunnel? Will Caydence eat all her meals with her mouth someday? We hope so, but we're just so proud of the progress she's made this far :)

Thanks for reading. <3

Monday, September 20, 2010

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

Thursday, August 26, 2010

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 :)

Tuesday, August 17, 2010

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

Wednesday, July 28, 2010

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

Wednesday, July 21, 2010

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 :)