Monday, October 31, 2011

31 for 21 Day 31: The Last One

Well, I've arrived. I made it through the 31 for 21 challenge (I found it much easier than last year), but partly because I made it part of my evening routine every night. The hard part was getting to read everyone else's blogs regularly too :(

We celebrated Halloween today with our two little monkeys. The kids had a parade and party at their school, so it's always fun to see the little kids dressed up (think of all of that cuteness in one place!) and to catch up with the parents that I don't usually get to see. This was the first year I made it to some of the parade but didn't get to see either of my kids until they were heading back inside.

When we got home, we went "trick or treating" for a little bit, but we mostly just walked to a few houses of the people that we knew so that I could say hi.

Trick or treating was a bit exhausting for Kailey apparently...

It feels good to end the challenge with something so normal. Happy National Down Syndrome awareness month!

Sunday, October 30, 2011

31 for 21 Day 30: The Good Life

Very early on in the 31 for 21 challenge, I heard the "Good Life" come on the radio by One Republic and it got me thinking about Colin, his life, and all of his peers who also live with Down Syndrome. We all have been working really hard this month to spread awareness about Down Syndrome and the lives of those living with it. We want people to know and understand that a disability doesn't define our children because they have so many abilities that make them who they are.

I am proud of Colin for showing the world that he is the most loving, fun, silly, inspirational, special, hard working and normal little boy.

...and he happens to have a little something extra.

I am thankful to all of you, whether you have a family member or not with Down Syndrome, who help us spread the word, who have changed using certain words, who have donated money, posted messages on facebook, participated in walks and events, and so on for joining us this month.

I am most especially grateful to all of those who submitted pictures and quotes to my project to highlight that even though those living with Down Syndrome have a disability, they do truly live the good life.


Saturday, October 29, 2011

31 for 21 day 29: Brother and Sister

I honestly thought that when we brought Kailey home, that brother and sister bond would be there and would be perfect. I thought Colin would dote on her and smother her with hugs and kisses just like he does with us. I was shocked when it was quite the opposite. In fact, I have been disappointed that he isn't more interested in her. Don't get me wrong, he WILL give her kisses and when no one is around, we often find him entertaining her by playing peek-a-boo, trying to give her her empty bottle, or will just play with whatever she is playing with as well. He definitely doesn't like to be forced into doing anything with her, which I think is why we see more of the playing together when we are watching from the other room. Kailey loves him, but I think she has a ways to go before Colin is as interested in her. I am hoping that as she becomes more mobile, he will take more of an interest in playing with her.

Tonight, Chris and I were both in the kitchen and we heard Kailey squealing like she often does when she is happy or laughing. We peeked in and this is what we saw...

I guess Colin wanted to play and his only option was to sit on her lap. She got him back though by slapping his back and grabbing at his clothes. I guess we have a lot of days like this in our future...

Friday, October 28, 2011

31 for 21 Day 28: A Glimpse Part II

You know how I said yesterday we can see a glimpse of our future in eating? Well...

This guy?

He was REALLY interested in Chris' pizza tonight (not mine, just Chris'...I guess Daddy pizza is better than Mommy pizza) and was taking bites, chewing and saying Mmmmm! The best part? He kept asking for more AND if you asked if he wanted more he would say yes!

We got a tad bit greedy and tried to cut the pizza into pieces, but he would only throw them on the floor and then I tried cutting his own piece (a small sliver off of another piece) and although he picked it up and took a bite out of it, I think he liked eating Chris' better. However, a baby step right?!?!

It truly is the little things that give me the greatest joy these days!

Thursday, October 27, 2011

31 for 21 Day 27: A Glimpse

It's no secret that we have spent the past 2.5 years with Colin facing feeding struggles of some sort. There are days when we feel like we will NEVER get to have Colin eating independently without any kind of struggle.

...and then there are days like the past few dinner times where we see a glimpse of the other end of the tunnel. Colin has been excited for his pancakes, has asked for it, has drank ALL of his pediasure in his cup, AND has been eating a whole banana along with the pancake. We put one piece at a time on his tray, but he will pick up all of the pieces himself and eat them. We are even seeing some slight chewing when we would never see that before. We are not seeing any changes with the spoon feeding, but as with anything, it's one little tiny baby step at a time.

In this video, he started acting out as soon as I had Chris video his eating. He was doing so well, but needed to put on a little extra show for the camera. At one point, you can very faintly hear him saying pancake. It sounds like you only hear the "ck" sound. It takes about 10 seconds or so for the video to focus...

Wednesday, October 26, 2011

31 for 21 Day 26: A Day in the Life

Most days, we go about a normal hectic day without much thought about Colin having Down Syndrome. I have to leave for work by 6:30am so that I can get some things done before school starts, and Chris feeds, dresses and drops the kids off at school. Two mornings a week Colin does have therapy that Chris is home for and then brings them after therapy is over. We are very thankful for Chris' flexible schedule in the morning so that the kids don't have to be at school to early. Before leaving for the work, Colin is usually waking up, so I will go in his room and sit on his bed with him for a few minutes. We "talk" and then I head out. Kailey is usually still sleeping, but once in awhile I will get a quick hug from her before leaving.

I'm pretty lucky though because Chris will send pictures throughout the morning so I can know what's going on with the kids.

They have time to eat, hang out for a little bit and play before leaving for school.

Unlike the first 2 weeks of school, Colin has been pretty good when dropped off. He will usually go right towards playing with either the other kids or the toys.

Colin has grown so happy at school that occasionally when I pick him up, he is not ready to go home. Today, he came crawling over to me as fast as he could on the playground and as soon as he got close, he turned and went to the slide instead!

The time that I pick the kids up at varies from day to day depending on what I have at school and if I am running or not after school. We go for walks, play with toys, watch Baby Signing Time and get ready for the next day.

Then...we do it all again the next day!

Tuesday, October 25, 2011

31 for 21 Day 25: I Didn't Know

When Colin was born and I found out that he had Down Syndrome, I was really scared because I didn't know anything about Down Syndrome. My perceptions were based on the few experiences I had had growing up in school. I didn't know what the future would hold. I didn't know how people were going to react when we told them. I didn't know if Colin was going to have any number of potential health problems. I didn't know what the next day would bring.

With time, I realized that what I didn't know I would learn and that I didn't need to know everything.

Because I also didn't know that one day I would get so excited because Colin sat up for the first time, crawled, and then stood up. I didn't know that it would feel so good to have him eat a whole pancake by himself, drink his whole cup of pediasure AND have half of a banana in one sitting (tonight....yay!).

I didn't know that Colin would introduce me to a whole new community of friends. I didn't know that the smallest of milestones would cause the biggest cheers in my house. I didn't know that Down Syndrome wasn't such a scary place.

I do know that we don't have to know it all because we have Colin and we have learned to take it one step at a time...

Monday, October 24, 2011

31 for 21 Day 24: Reading

Chris and I have been reading to Colin since he was just a new little baby. He went through periods where he seemed to "lose interest", but in the past 6 months or so, he has really enjoyed books. At the same time, his love for books has been coupled with his increase in his spoken words. We still continue to use signs on a regular basis, however, we have been really happy to see that he is really trying hard to say the words as well. I am amazed every day to hear new words coming out of his mouth. One of my favorites these days is him saying "please" because it's so cute and clear. Other new words he has been using regularly are pancake, book, home, thank you, lots of animal noises, and he will pretty much try and say anything. I love it. I am amazed every day when I hear something new or something that is not prompted. It truly is the simple things that make me feel so happy...

Sunday, October 23, 2011

31 for 21 Day 23: Special Olympics

Colin participated in his first ever Special Olympics event today through the Young Athlete Program. This program was a part of their fall festival and although we got there late, it was fun to participate. This is the very beginning of all that we hope to have Colin be a part of. The Young Athlete program helps to encourage the development of different skills in the young athletes. I was hoping that by the time we participated in our first event Colin would be walking independently, but he still had a great time!

He met some new people and worked with the physical therapist who is the "trainer" for the program. Colin wasn't the most cooperative little boy, but mostly because he wanted to do his own thing. There was a lot going on around us because there were many fields of different events going on, and there were a few times that Colin tried to crawl away to see what was going on.

It's funny because Colin is pretty popular already! There were a few people that came over to say hi to him because they thought he was so cute, and there were lots of people that just came over and said "hi Colin!". There was someone who came over and got him on video and several other people snapping photos of him! Of course he hammed it up as soon the limelight was on him! As we walked around, people were instantly attracted to him because he is a part of a community now. I am proud to belong to this community of families.

Part of the reason why we are so involved in the Polar Bear Plunge every year is because the money that is raised goes to the programs that Colin is now taking advantage of. We hope this is our biggest and best fundraising year yet!!

Saturday, October 22, 2011

31 for 21 Day 22: Fundraising

Today my brother Pat and his girlfriend Kristine hosted a fundraiser at the restaurant he works at for the Special Olympics of NJ Polar Bear Plunge in honor of Colin. It was a great success and we are so thankful to raise money for the Special Olympics of NJ!

We are so lucky to have so many family and friends who go above and beyond for Colin AND the Special Olympics.
Thank you SO SO SO MUCH Pat and Kristine for all that you did to set up for today's event. We love you very much!! :)

Friday, October 21, 2011

Thursday, October 20, 2011

31 for 21 Day 20: A Perfect Mistake

"Down syndrome (DS), also called Trisomy 21, is a condition in which extra genetic material causes delays in the way a child develops, both mentally and physically. "

"Normally, at the time of conception a baby inherits genetic information from its parents in the form of 46 chromosomes: 23 from the mother and 23 from the father. In most cases of Down syndrome, a child gets an extra chromosome 21 — for a total of 47 chromosomes instead of 46. It's this extra genetic material that causes the physical features and developmental delays associated with DS."

Down Syndrome is known to be an error, a mistake that occurs right at the beginning. When the "mistake" happened, my perfect baby was formed.

The question comes up all of the time that asks "would you change anything if you could". I have thought about this over and over again because I couldn't imagine not having my beautiful, loving, funny, and crazy little boy (feeding troubles and all). Do I wish that he didn't have to face certain challenges and work extra hard? Of course. But I don't want to change WHO my little boy is. That extra chromosome? It's perfect....

...It's the best mistake ever made.

"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well."
- Psalm 139:14

Wednesday, October 19, 2011

31 for 21 Day 19: Everyday Life

** Calling all Mommies, Daddies, and other family members of those with Down Syndrome. I am working on a project for the end of Down Syndrome Awareness month and I would LOVE photos of your kids (if you are interested of course). It will be a video and I will share it with you when I am finished. I wanted to highlight that our kids with DS really do live the "good life". You can send it to my email at If you send a picture, please also send a word or phrase that you think describes your kids. Thanks! **

After we got home from school today, I set Kailey and Colin up in the family room to watch baby signing times. I left to unpack bags and get dinner ready when I heard a big "thump" (almost, the body hitting the floor kind of "thump" so I go running into the room and find Colin rolling the (rather large) pumpkins off and away from the fireplace.

He was so proud of himself!

...and, to make you giggle again, the next video shows the fun you can have with sticky syrup hands!

...and then some fun with Kailey as she was dancing to Baby Signing Times and playing with Colin. The biggest shock of all is that he didn't get super jealous when she was sitting in his chair!

Just a normal kind of day....

Tuesday, October 18, 2011

31 for 21 Day 18: The Positive Side

Since most of the time whenever I talk about Colin's feeding it is negative, I decided to show you that I DO see a positive side on occasion. We know there has to be a bright side some point down the road, even though it feels so far away.

This was dinner tonight. On the one hand, Colin was doing really well feeding himself pancakes (the positive side) and I am really proud of him for how far he has come in that sense. This is the only thing he will feed himself and we have to put one piece at a time on the tray because as you will see in the video, he will stuff them all in his mouth if you give him more than one. (I wish he would do this with a spoon!)

But then, when I wanted Colin to drink milk with pediasure instead of his smoothie, he fought me and had a mini-tantrum. So, our meal times are very up and down but just wanted you to know that I DO see the good things when they happen...

Monday, October 17, 2011

31 for 21 Day 17: Counting

** Calling all Mommies, Daddies, and other family members of those with Down Syndrome. I am working on a project for the end of Down Syndrome Awareness month and I would LOVE photos of your kids (if you are interested of course). It will be a video and I will share it with you when I am finished. I wanted to highlight that our kids with DS really do live the "good life". You can send it to my email at If you send a picture, please also send a word or phrase that you think describes your kids. Thanks! **

Even though it may take a little bit more time for kids with Down Syndrome to learn things, it does not mean that it is challenging for all and they will learn all of the same things that typically developing children do. We have been working really hard on teaching Colin his alphabet, numbers, and colors. We try to count as many things as we can with Colin so that the repetition will help as a "hand over hand" technique. Colin is doing so well with his numbers and has a specific sound that goes with each number up to 10. This next video is horrible quality, but it was on my phone this afternoon after our walk and shows Colin counting. I love the little head nod too with each number.

Sunday, October 16, 2011

31 for 21 Day 16: Family Time

* Calling all Mommies and Daddies with a child with Down Syndrome! I'd like to do a special project to end Down Syndrome awareness month by showing our kids live the "Good life". If you are interested, I would love it if you could send me a picture of your child either alone, with a friend/family member, with your whole family or whatever works for you! You can send it to my email @! Thanks!*

Just because you have a child with Down syndrome, does not mean that you spend every waking moment of your day and life thinking about it. In fact, most of our days are normal and busy and hectic and challenging, but not because Colin has Down Syndrome. We have little moments here and there where we are reminded that Down Syndrome is a part of our life, but for the most part, we are just a regular ole' family...

We drove out to a popular farm about 30 minutes from us today to go apple picking and they had the orchards closed! So, we walked around for awhile for some pumpkins and photo opportunities. The kids sure enjoyed themselves!

This may be my new all time favorite photo...

and another...Daddy daughter moment.

Love family photos...just wish everyone would look at the camera at the same time.

Aunt Kimmy came and spent the day with us!

I could get used to this...

Being entertained by her big brother...she thinks he is so funny! happy little pumpkin girl.

Yes, Down Syndrome is a part of our life, but it isn't our life. It just makes us all who we are.