Monday, October 3, 2011

Fact #3

Having a baby with Down syndrome can happen to anyone. The cause of Down syndrome is unknown, but it has been found that women over age 35 have a slightly higher risk of having a baby with Down syndrome. However, the majority of babies with Down syndrome are born to mothers under 35 years old because of the high number of pregnancies in this age group.
As most of you are aware, women are born with a set number of eggs in their ovaries. Cell division in those eggs remains suspended in each, until shortly after ovulation. It is possible that as eggs age and remain suspended in their cell division for many years, something happens to cause the chromosomes in them to become sticky or to fail to separate properly. Research has supported the view that older eggs are more prone to errors in cell division with increasing maternal age.

Sunday, October 2, 2011

Down Syndrome Awareness Month!

October is Down syndrome awareness month and because of this, I will be posting a Fact about Down syndrome everyday on Caydence's blog and my Facebook page. Since I am already a day late, I will have two Facts today :)

Fact #1: Babies with Down syndrome are born with low muscle tone. It usually affects all muscles of the body. Low tone can complicate all areas of development, especially gross motor skills such as rolling, sitting, standing, and walking. It takes them longer to develop the muscles in their body to accomplish these tasks. It also results in increased mobility between the joints.

So that is why Caydence is so flexible!

Caydence does not walk yet, but she is starting to stand with assistance and has started to walk along the couch. She still has very low muscle tone though. You can really tell the difference when you hold Caydence and then hold Sydney. Sydney feel like a little Hulk Hogan compared to Caydence. But as we work with her and as she grows and plays she will develop her muscles more and more.

Fact #2: Down syndrome is not a disease; it is a genetic condition. You can't "catch" Down syndrome. A baby has Down syndrome the minute the sperm meets the egg. It's not something a woman can develop during pregnancy because it is present at the moment of conception; as soon as the cells divide. The most common type of Down syndrome is Nondisjunction Trisomy 21 or T21; it occurs because of incorrect chromosome division during meiosis. It results in the fertilized egg having three 21st chromosomes instead of two. The other types of Down syndrome are Translocation T21, Mosaicism (Mosaic Down Syndrome), and Partial Trisomy 21.

Caydence has the typical T21 Down syndrome. 

I'll write an update soon, about how Caydence has been doing but, too busy at the moment. Hopefully tomorrow :) Thanks for reading.

Thursday, June 2, 2011

Pedialyte Trail Day 2 and 3... Success?!?!?!


Is that a light at the end of the tubie tunnel I see???? Perhaps... we'll have to see. Here is a recap of what has happened since my last post yesterday, on the morning of Day 2...

So when I last wrote, Caydence had fallen back asleep while playing with her toys and it was time for lunch. I woke her up, changed her diaper and got her in her highchair. She was still very sleepy. She didn't really want to eat. She threw her fishstick pieces, she threw the macaroni and cheese I made her, and she threw her Mac N' Cheese puffs. Eventually, I was able to get her to eat half a fishstick and an ounce of her yogurt/pediasure drink. But she was just SO lethargic. She kept putting her head down on her highchair tray and wanting to go to sleep. Then she started crying. That was when I had it! The therapist hadn't called back yet and I totally caved. I hooked up her tube and gave her half the amount of Pediasure she would normally have and the rest Pedialyte. She seemed to perk up a bit, but was still tired, so I then put her down for a nap.

She slept for 3 and a half hours and when she woke up she seemed much more improved. Earlier ,while she was sleeping her feeding therapist called me back and basically just told me that everything sounded pretty typical. She had heard that a lot of kids get really tired and lethargic. She said that it was fine to give her the Pediasure to get her more awake. Since obviously, you can't really feed a kid who is slumped over in their highchair.

So when Caydence woke up, she was a lot more chipper and back to normal. During her next feeding she declined beef broth, smooshed carrots, mac n' cheese puffs, melted chocolate, and yogurt melts. Thankfully, Josh came home after about 20 minutes of me trying to get her to eat and he was able to help me feed her. She eventually ate an ounce of her drink, 5 or 6 cheddar & bacon TGIFriday's potato skin chips, 1 piece of kix cereal, and 2 sweet potato puffs. Then when she wouldn't eat anymore, she had her Pedialyte and water.

That night we went over to celebrate our friend's birthday. I was eating some popcorn and Caydence was watching me intently and started signing "more". Which means she wants something. I thought it was crazy that she would want some popcorn, since it is such a different texture, but I pulled off some big puffs off the kernel and gave them to her. SHE LOVED THEM!!!! She kept wanting more and more and more!. She probably ate anywhere from 1/4 cup to a 1/2 cup of popcorn puffs. She also ate some garlic bread. Now, I know that most of what she's been eating isn't the healthiest. But right now, I am just trying to find anything that she will eat. When we came home she had Pedialyte and water and then went to bed.

Day 3...

When I woke up this morning, I was nervous to see her. I was afraid she would be the weak, shaking little Caydence I saw the previous day. But when I went in her room, she was fine. Sitting in her crib, playing with her stuffed animals with a big 'ol smile on her face. I took her down stairs and got her all set up for breakfast. She declined (uh um, threw) banana, toast, yogurt melts, and applesauce. But I was able to get her to have about 7 big spoonfuls of oatmeal, which equaled about an ounce. And 2 ounces of her drink! This was a big deal, for she hadn't had 2 ounces of her drink in like 2 months! So when she wouldn't take anymore, I subtracted the amount she drank by mouth and hooked her up to have the rest via Pedialyte and water in her tubie.

At lunch time, she again surprised me. She ate practically a whole fishstick (only 2 small bites left), she had 28 mac n' cheese puffs, and drank 4 ounces of her drink!!!! Yes 4 OUNCES! That's the most ever! INSANE!!!! It was awesome. After she wouldn't take anymore. I again hooked her up and gave her Pedialyte and water; (subtracting the amount she took by mouth).

At this point I am thinking... she finally gets it! She is starting to understand that eating makes your belly full. It makes you feel better!

After lunch she took a 3 hour nap. When she got up she ate again. She initially threw the macaroni and cheese I tried to feed her. But I was able to bribe her by making her realize that she doesn't get to drink her drink until she eats a noodle. So she would eat a macaroni and cheese noodle and then get a drink, eat another noodle, get a drink. She caught on quick. She ended up eating about 1/8th cup of macaroni and cheese, about 15 cinnamon maple crunchies, and again 4 OUNCES of her drink!!!!!!!!!!! Awesomeness!!!!

For dinner tonight Josh and I had steaks on the grill, garlic mashed potatoes and green beans. I definitely wanted to have the mashed potatoes, cuz I know Caydence really likes them, so I wanted to be sure she had an opportunity to eat them. We were kind of slow on getting dinner started cuz we were on a cleaning spree when Josh got home from work. But we got things going and dinner was probably 15 minutes away from being ready. All of a sudden Caydence just had a melt down. She just kept crying and crying. I figured she must just be tired and hungry. So I had Josh get her in her high chair and I made up her drink. Boy did she want that drink!!!! As soon as I started giving it to her she was all smiles! She wanted more and more and more and more!

Caydence ended up taking 7 OUNCES OF HER DRINK!!!!!!!! The most ever by far! I couldn't believe it. It was enough, that she didn't even need a tube feeding!!!! This is the first time ever, that she has eaten enough by mouth that we were able to actually skip a tube feeding! I should also mention, that she also ate about 17 mac n' cheese puffs, but wanted nothing to do with the garlic mashed potatoes...which is weird because she's always liked them whenever she's tried 'em. Oh well. I am just sooo happy that she drank that much!!!!!

Tomorrow I'm going to call her feeding therapist and GI specialist to see where we are supposed to go from here. I first need to figure out how many calories she was able to consume; especially today. Then I need to figure out if her thickened Pediasure dranken at 7 oz, is still equal to 7oz unthickened, so figure out if its enough fluid to sustain her. I'm just not sure if thickened Pediasure would equal the same amount as unthickened. Kind of confused... I'm sure we'll need to work with a nutritionist.

On Day 2, I was SO ready to throw in the towel, but I'm glad I stuck it out! It seems cruel, but Caydence has now experienced real hunger, probably for the first time in her life. But I think she is starting to realize just when food is. That food is good, it gives us energy to live, and is necessary! Hopefully she will continue to eat like this, and expand her palette a bit along the way. I'll keep you updated :)

Wednesday, June 1, 2011

Pedialyte Trial Day 1 into 2

Caydence has been starting to eat more the past few months. But not enough to eliminate or decrease any of her feedings. Her feeding specialist that she sees recommends that we do a Pedialyte trial with Caydence in order to get her hungry and hopefully, get her to eat more. We called Caydence's GI specialist and they agreed and gave us the directions and amounts for the trial.

What happens is that we replace all her Pediasure with Pedialyte for 3 days. So she stays hydrated, but doesn't get any calories. The Pedialyte is also supposed to keep her electrolytes balanced. We were told that kids don't eat much on Day 1, but by Day 2 and 3, she should be eating a lot more. The GI specialist suggested not giving her any Pedialyte during the day and just give her all the Pedialyte and water overnight while she is asleep. But I know that totally would NOT work since she is a mover and a shaker at night. The tube would probably come out or she'd pull it apart and we'd have a Pedialyte water crib. So I've opted to give the Pedialyte in her tube after ever "meal" like I would with the Pediasure.

Yesterday was our first day on the trial. For breakfast she had a bite of banana and then she spit it out and threw it. After that she had 7 pieces of kix cereal and then started throwing them. She also had 4 spoonfuls of her yogurt/pediasure drink on a spoon and then started spitting it all out. She wouldn't take anything more after that.

At lunch she ate almost an entire fishstick, which is the most fishstick she has ever eaten. This took her a half hour. And she wouldn't eat any of her cooked carrots which she normally likes. She also had a 1/2 oz of her Pediasure/yogurt drink on a spoon.

For an afternoon snack I tried giving her small bits of peanut butter and jelly sandwich, but that was a no go. She just would pull them out of her mouth and throw them. She had 1 goldfish cracker but after that, she proceeded to pull them out of her mouth and throw them. She did take an ounce of her Pediasure/yogurt mixture on a spoon and 7 pieces of bacon and cheddar potatoskin chips and 8 pieces of mac N' cheese puffs.

Dinner was the hardest, because I knew by then she must be starving. Except she didn't want to eat :/ She didn't want any brownie, noodles, or chicken tenders. She took 3 spoonfuls of her drink and then just started spitting it out and smooshing it around in her hands. We tried her mac N' cheese puffs, but she just took them out of her mouth and threw them. She didn't want anything, but seemed fine.

This morning she was VERY lethargic and didn't want to wake up. We finally got her up and got her down stairs in her highchair. She was very weak and sleepy and her hands we kind of shaking. She acted hungry though and I was able to get her to wolf down an ounce of her drink on the spoon, 3 big bites of oatmeal and a half a jar of applesauce. She turned down the blueberry waffle, kix cereal, banana, strawberry/apple puffs, and mac N cheese puffs though. She had her Pedialyte and water and seemed more like her self.

I called her feeding specialist and left a message asking if this is normal. If she should be eating more by now... If I should give her a little Pediasure in her tube to take a edge off. I'm still waiting to hear back. Caydence just fell asleep playing with her toys. And it's time for lunch. Understandabley she is zapped for energy and very tired. For lunch I'm going to try more fishsticks since she seemed to like them yesterday and some mac n cheese. Tonight we're having steak and garlic mashed potatoes for dinner. So I'm hoping she'll eat some of the potatoes since she has LOVED them the past two times we've had them. Maybe she'll have some hotdog and veggies too. We'll see...

It was so hard seeing her so weak and frail this morning. I don't know how much longer I can do this. I guess we'll see how lunch goes, but I might end up having to give her Pediasure. Hopefully my little sleeping beauty will wake up for lunch now...I'll keep you updated...

Wish me luck <3

Monday, May 2, 2011

My New Favorite Pic

The other day Caydence was playing in her play area and I brought Sydney over and placed her in the bumbo chair so they could sit together. Sydney started crying, so Caydence looked around and found her dolls baby bottle and proceeded to try to feed Sydney with it. It was SOOO adorable! Here's the pic!

Tuesday, April 5, 2011

Caydence Welcomes her Baby Sister!!!!

Caydence's baby sister Sydney was born on March 2nd!

Monday, February 28, 2011

She's a SPONGE!

I'll be 39 weeks pregnant tomorrow and being induced Wednesday morning. I thought I'd better get a post in before things really get crazy with 2 little girls in the house.

Caydence has turned into a sponge, she seems to be picking up everything we've been teaching her lately. It's amazing. Here's some new things she's been doing the past few months.
  • Can sit up from a laying position
  • Pivots around in a circle while sitting
  • Stacks her blocks
  • Puts together her nesting cups in order
  • Waves Bye Bye
  • Feeds her babydoll with a spoon and bottle
  • When asked "Where's your foot?" she will either grab her foot or grab your hand and put it on one of her feet.
  • When asked "Where's your hair?" she will grab her hair
  • When asked "Where's your nose?" she will point to your nose, sometimes her own
  • When asked "Where's the bear?" she will point to Josh's bear tattoo on his left arm.
  • When asked "Where's Katlyn?" she will point to Josh's tattoo of our daughter Katlyns footprints on his right arm. Katlyn was stillborn in Feb 08.
  • Understands the words "In", "Sit Up", "Up", "Stack", "bear", "foot", "nose", "bye bye", "Katlyn", "Elmo", "Grover", "Ernie", "Play", "Mama", "Dada", "Gram Gram", "Ball", "Kitty", "Book", "Spit", "Eat", "Drink", I'm sure there are more, but I can't think of them off hand
  • Understands the signs "All Done", "Eat", "Drink", "Play", "Ball", "Daddy", "Mommy", "Grandma", "More"
  • Clearly says "Dada" when she wants her Dad
  • Signs "More"
  • She also has been trying to do the hand motions when I sing her the Itsy Bitsy Spider

Right now, she is really into fine motor skills. She's not big on gross motor skills. She doesn't like to be on her stomach or on her hands and knees, so she still isn't crawling, but she gets to where she needs to go by rolling, twisting and pivoting around. We aren't too worried though, it's not like she will never walk.

She was doing pretty good at eating, but now she's poppin a couple more teeth, so she's been rather fussy. Only taking about an ounce at a sitting :P

Anyways, I just thought I type a quick note to let everyone know how's she's doing.

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 :)