Monday, October 3, 2011
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: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:
Thursday, June 2, 2011
Pedialyte Trail Day 2 and 3... Success?!?!?!
~~~~WARNING, VERY LONG POST AHEAD~~~~~~
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 :)
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
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
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.
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.
- 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.
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.
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 :)
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...
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. :)
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http://www.firstgiving.com/caydence
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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 :)
"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
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 :)
Tuesday, July 20, 2010
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
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
Monday, July 19, 2010
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 :)
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 :)
Tuesday, June 15, 2010
Caydence is our Rainbow Baby!
Friday, June 11, 2010
Happy Birthday to Caydence!!!!!
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 :)
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
Wednesday, March 17, 2010
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.
-----------------------------------------------------
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.
-------------------------------------------------------------
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.
-----------------------------------------------------------
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?
------------------------------------------------------------
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 :)
--------------------------------------------
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.
-----------------------------------------------------
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.
-------------------------------------------------------------
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.
-----------------------------------------------------------
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?
------------------------------------------------------------
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 :)
Thursday, February 11, 2010
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.
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