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:

http://www.michellemartinphotography.com/

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

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 :)

Caydence is our Rainbow Baby!

In some circles, babies born to families after the loss of a child are referred to as "Rainbow Babies." The idea is that the baby is like a rainbow after a storm. "Rainbow Babies" is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn't mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy and hope.

Happy Birthday to Caydence!!!!!

Yesterday my sweet baby girl turned 1!!!!

As I said in my last post (many months ago), we've been waiting for this day since before she was born. Caydence has come so far in the last year and we're so proud of her. She made it a month in the NICU, then had months of doctor appointments, blood draws, xrays, echos. She had OHS in December followed by a 6 day hospital stay. G tube surgery in February. Got her button placed in April. Now things are finally calming down. I guess that's why I haven't posted much lately. Just enjoying life now :)

This Sunday we are throwing her a big birthday party to celebrate :) I promise to post lotsa pics.

Caydence has been getting better at eating, but still has a ways to go. She will definitely eat all her food orally eventually, but it might take a year to get her acclimated. The good thing is, is that since she's not throwing up anymore, she's starting to associate tasting and eating as "a good thing". A couple days ago she ate a whole ounce of squash! It will be interesting to see what she thinks of birthday cake :)

Currently she weighs 15 lbs 13 oz and is about 27 inches long... or 2'3" if she were standing :) She sees a feeding specialist every other week. And her OT from Birth to 3 comes in once a week to work with her. Both are helping a lot.

Caydence is close to sitting by herself, but is still a bit wobbley and likes to fly backwards a lot :/ You see, most children with Down syndrome are born with really low muscle tone, so it takes them longer to build up that muscle they need to sit, crawl, and walk than typical children.

Caydence's newest tricks are clapping and signaling that she wants the ball when we're rolling it back and forth. Can't wait to see what she'll do next :)

Stay Tuned <3

Updates Galore!

I am sorry it's been so long since our last post. I know many of you have been waiting for updates. I'm gonna try to start posting more often. Time just seems to get away from me :P
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Life with a new tubie...

Since we wrote last, Caydence has adapted to her new tubie wonderfully :) Having her hands free has opened a whole new world for her and she is constantly reaching for toys, sucking on her fingers, and exploring her world. It's also so so nice not to have a tube taped to her face. Her cheeks are finally healed and now we can take her out without people constantly asking "What's wrong with her face?!?!?" "What's that tube for?!?!?" :P The peg tube is much more discreet; we can just tuck it in her shirt or pants. But not for too much longer because she will be getting her MIC-KEY button sometime in mid April, which will be nice because then she won't have an actual tube hanging from her tummy all the time. It will just be a port and then the tube will just be hooked up when she's eating.

Speaking of eating... Caydence is still not into the whole eating thing. I was trying to bottle feed her twice a day and spoon feed her baby food twice a day, but I think it was over stimulating her a little. So now I'm only doing each one, once a day. Either way, she still isn't doing the greatest. She usually ends up just spitting out any food or milk that gets in. Then she gets mad and yells at me. We're looking into seeing a feeding specialist.
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Getting Stronger...

Other than problems with feeding, Caydence is doing great! She actually rolled over from her back to her tummy for the first time yesterday. She had been trying for months to get from her side to her stomach, but she would always get caught up on her arm. Now she's finally got enough strength to roll herself over it. She just needs to figure out how to get from her tummy back to her side again.

Caydence is also putting weight on her feet now. I've been doing exercises to strengthen her legs the past month and it has really been helping a lot. Her legs used to be like two little wet noodles, but now they are getting much stronger and more sturdy. She still can't sit unassisted, but we're working on it. She can do the tripod position for a couple seconds before her arms give way. And she is doing much better in her bumbo chair. This past week is starting to learn to push herself up with her arms when she's on her tummy. But we still got a little ways to go.
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Teefers?...

I could be mistaken, but I think Caydence might be getting ready to pop her first tooth. Although, she is getting over her first cold, she has had a low grade fever the past couple weeks, constantly biting/chewing on her fingers, drooling and making biting movements. Who knows though, maybe it's just one of those things, cuz I still don't feel any toofers in there.
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Birthday Fun...

Since she reached the 9 month mark last week, I have started planning her first birthday party. It's a date we have been looking forward to since before she was born. When we found out about her heart defect, her surgery was kind of like a dark cloud looming over us. One of the things that kept us going was the thought of her first birthday party. We just kept telling ourselves, that if we can just make it to her first birthday, everything will be gravy! Her heart surgery will be over and we won't have this black cloud of death following us around! After everything she has had to go through her first year of life, her first birthday was kind of like a beacon of hope in the horizon.

The main problem I am having right now is figuring out what to do for her birthday cake. Most kids get their own little cake for their first birthday and dig in and eat it while getting it all over themselves in the process. But Caydence won't eat... And the thickest food she even attempts right now is stage 1 or 2 pureed baby foods. So I'm not too sure what we're gonna do about that. Maybe the feeding specialist will have some ideas... Anyone got any suggestions?


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Spring has Sprung!...

The weather has been absolutely gorgeous here lately! It's been so nice to get Caydence out on walks in her stroller the past couple days. Since we've been cooped up in the house all winter, the change of scenery has been more than welcomed. The warm weather and blue skies have made me soo happy. I finally feel hopeful that things are going to be alright :)

Our little peanut is home!!

Daddy here:

Well, as most of you probably know by now, our little Caydence had surgery to put in a new feeding tube on Wednesday and she came out of it like a champ. The surgery itself took less then a hour and all went well in surgery. After the surgery was complete the doctor came out and told us that it went well and then she gave us pictures of the inside of Caydence's stomach. I know, kinda weird huh? But it showed us what the feeding tube looks like on the inside so I guess it was helpful. But then we got to go see our little girl in recovery and after 2 hours there, we got to move up to her room. Yesterday afternoon she wasn't feeling so hot but who can blame her, she just went through surgery. But this morning, Caydence was acting like her old self again.

Shortly after arriving in her room, the nurse started Caydence on a slow feeding of Pedialite and after a few hours of that, she was started on a slow feeding of regular milk. For her to be able to come home today she had to handle her normal feeding amount and normal feeding schedule and she was able to do that perfectly, so, here we are at home now.

Here's a picture of Caydence with her new tube. As you can see, it comes out of her stomach and has a couple of different ports for us to use. The really nice thing about this tube is that we can hide it under her clothes so she can't have access to it because I'm sure she would try and pull on it if given the opportunity, and, no one else has to know that she has a feeding tube.

All in all, the stay wasn't bad for her this time. She only had to remain there over the night and we were able to bring her home this afternoon. At this moment she's resting peacefully in her swing with no real effects from her surgery. We're giving her a little tylenol for the possible pain but other then that she's the same. Well, the same except for her new found toys, her HANDS!!! Yeah, since this morning she can't seem to get enough of them. At one point I was worried that she might be trying to eat her hand because she had all of her fingers in her mouth. I love the fact that she's enjoying having her hands out of her mittens and I know I'm going to LOVE the fact that we will never need to put a NG tube in again. And, we get to see our daughter's face with no tape or tube on it which is so cool also.

New Tubie :)

Just a quick note. Surgery was a success! It only took 30 minutes and then they put her in recovery. She had to stay there for a couple hours though because her O2 sats were low and they had to wean her off oxygen before they moved her to her room. She was in a lot of pain in discomfort when she came out of anesthesia, but she's good now and resting peacefully. Hopefully we can go home tomorrow :)

Our little short stack

I just got a call from the hospital a little bit ago and they told me that Caydence's surgery is scheduled for 8:30 tomorrow morning. I can't wait to get rid of that silly ng tube for good!  I was worried the doctor would cancel the surgery because Caydence has been sick the past week with the sneezers and small fever. But the anesthesiologist wasn't worried about it. He said he would only be concerned if her fever was 101 or higher or if she had a bad cough or trouble breathing.

Meanwhile, Caydence has been taking her mittens off every 5 minutes the past few days. She really wants to suck her thumb, but sometimes when she puts her fingers up to her mouth she yanks on her ng tube as well, so I've had to keep putting her mittens back on. This morning I had enough! I felt kind of bad, but... I taped her mittens on with 2 inch masking tape. :P

She thought it was pretty funny at first, but then she realized she couldn't take her mitties off and she wasn't as pleased. We keep telling her that pretty soon she can have her hands free all the time and she can suck and chew on her fingers all she wants. :)

Josh wanted me to write about the unfortunate poo fiasco I had this morning. I won't go into too much detail, but let's just say that there was poo EVERYWHERE! All over Caydence; all over me, all over the changing pad, all over the bed sheet and all over the mattress! The changing pad and bed sheet were casualties of war, but fortunately me, Caydence, and the mattress all survived after some thorough cleaning.

Over the weekend I finally put the jump jump together that we had bought Caydence with her Christmas money. She has been holding her head up pretty well lately, so I was excited to get her in it and see what she thought.

Unfortunately, our little short stack can't reach the floor, even at the lowest setting :(

I propped some books under her, but she isn't putting any weight on her feet yet, so I think it's gonna take sometime for her to actually JUMP in her jump jump :P

On a good note, Caydence went to the cardiologist yesterday and although she screamed bloody murder throughout her entire echo, her heart is looking good :) We also got the green light to lift her under the arms again.

Anyways, thanks for checking in on us :)

I'll write tomorrow afternoon to let you all know how her surgery goes in the morning.

Another Surgery

Caydence still isn't doing well at all with bottling. We were rather optimistic after her heart surgery since she no longer had the gag reflex, but she just can't seem to grasp the concept of sucking on her bottle. So Caydence will be having surgery next Wednesday, February 10th, to get a G-tube.

The NG (nasogastric) tube that she has now is really only meant to be a temporary solution, like 2-3 months and she has had it 8! The G-tube placement is a minor surgery and will take about an hour to complete. Caydence will be put under general anesthesia and will require a 1 to 2 night hospital stay just to make sure it is working alright.

The kind of tube she will be getting is called a PEG tube. It will remain in place for about 2 months which will allow the opening to heal. Then she will go in for an outpatient visit at the sedation clinic and get a balloon type G-tube put in it's place. It's a type of tube that is held in place with an inflatable balloon. They lie flat against the skin and the is no external tube attached. It kind of resembles the inflation valve on a beach ball.

Josh and I are nervous and excited all at once. Nervous because, although it's a minor surgery, it IS still surgery! And excited because once she has the G-tube, Caydence doesn't have to keep her hands in mittens all the time anymore and we won't have to worry about her pulling out her tube like she did yesterday. She won't have to have a tube taped on her face all the time. Her little cheeks can heal and we can see her whole face, SANS TUBE! :)

Meanwhile, Caydence is learning to eat baby food. Thus far, she has experienced rice cereal, prunes, and sweet potatoes. She's seemed to enjoy them all, but I can't really tell how much she is actually swallowing. A lot end up on the bib, her hands, and face. Someday she will learn how to drink from a cup and suck on a bottle or straw, but it will take some time.

Anyways, wish us luck! <3

Sweet Baby Gabby

A few weeks before Caydence's open heart surgery, I was on BabyCenter looking at posts on their Down Syndrome board. To prepare myself for Caydence's surgery, I was reading posts by other parents describing how their children's heart surgery went.

I came across a mother whose 4 month old daughter had just had the same surgery Caydence was to have. Unfortunately, her daughter Gabby was having complications and the next day I found out she had passed away. I was devasted for this poor family and obviously very distraught at the thought of Caydence's upcoming procedure. I didn't tell my family about Gabby because I didn't want to scare them. But her story stayed with me and I thought about her often.

This morning I saw a video that Gabby's mother had made in remembrance of her daughter. It's not just about the loss of a beautiful baby. It is also about raising awareness about Down syndrome. 90% of babies with a prenatal diagnosis of Down syndrome are aborted.

YES... 90%!!!!!

So many unborn babies with Down syndrome are killed simply because their parents are too scared to take care of them. They think that caring for their child will be a burden or are worried about what other people may think of them. They want to take the easy way out.

Every life is precious and every life is sacred. Aborting your child just for the simple fact that they may have Down syndrome is simply ridiculous. But so many people are uneducated and don't even understand what Down syndrome is.

The potential of children with Down syndrome has been underestimated for centuries. But today, with advanced medical care, early intervention, better education, and greater social acceptance, children with Down syndrome are functioning at increasingly higher levels.

As Gabby's mother states, "Every life has a purpose. Gabby's life had a purpose."



To learn more about Down syndrome, check out the book "Babies with Down Syndrome" or visit the National Down Syndrome Society Website www.ndss.org

Thank you for taking the time to read this post and God Bless Baby Gabby!

Rice Cereal & Pigtail Fun!

Caydence's hair is just long enough for little pigtails now! She looks so cute in them too. Since I've written last, her incision has continued to heal up very nicely. She only has one little scab at the very top.

The other day I tried her out in her high chair for the first time. She seemed to like it pretty well :)



We had been wanting to expose Caydence to solid food for quite awhile, but her doctor's had wanted us to wait until after her surgery. When we met with her pediatrician a couple weeks ago he thought it would be alright for us to start giving her solids. So yesterday Caydence had her first try at rice cereal! It's kinda funny :) Enjoy!