New glasses!

I know....it doesn't get much cuter than that!

Dylan's 1 year old!

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Buddy Walk...SUCCESS!

The Down Syndrome of Cincinnati Buddy Walk took place a few weeks ago. For this being our first year and not knowing what to expect, I would classify it as a smashing success!

We raised close to $7,000 for Team Dylan, and out of close to 200 teams participating, we came in 8th place for fundraising overall! Because of this, as a perk we got our own tent at the event....what a nice bonus!

It was amazing the amount of generosity that poured out from people. Financial contributions from family, friends, co-workers, Dylan's therapists, and even some strangers, just to name a few. On top of the donations, we had over 60 people come out to walk in support of Dylan. Talk about feeling loved. The Buddy Walk was a great day...it poured down rain, but we walked on!

We have already been discussing our tactics on fundraising for 2011 and how Team Dylan can get even bigger and better. We are excited to be a part of such a great cause.

I think that the coolest thing about the Buddy Walk was the tremendous amount of love that you could just feel everywhere. Thousands of people there for just one cause-supporting and bringing awareness to the wonderful individuals with down syndrome. We were so proud to be a part of something so special.

11 months, Buddy Walk and Bye Bye!

Happy 11 months Dylan! It is amazing how fast time flies and it's hard to believe that Dylan will be one year old next month....what a milestone and we cannot wait to celebrate! Dylan has been growing and changing and making us laugh every day. He is sitting up on his own now and has learned how to wave when you say "bye bye." He gets a little carried away sometimes though so you have to watch that he doesn't smack himself in the head once he gets that arm going! :)

In other news, today is the deadline to turn money in for the Buddy Walk to be named one of the top 10 fund raising teams. If you are in the top 10 you get a tent at the event, and with all of our family coming out this weekend to support Dylan, that is a really nice perk. The deadline is at noon, and we know grandma will be anxiously waiting by the computer to make sure nobody comes from behind and knocks us out of our current 6th place ranking. We currently have 38 people signed up to walk with us, and have raised $6,372 so far. Not too bad for our first year!

Buddy Walk

This is the first year that we will be participating in the Down Syndrome Association of Cincinnati Buddy Walk. You can find info on our team here:

http://www.syssolutions.com/fr/DSAGC/2010buddywalk/TeamDylan

We are so pleased with all of the donations that have come in so far. It is such a good feeling to know so many people support us. We are looking forward to walking and hope that many of you can join us! We are also hosting a fundraiser at Barleycorn's in Cold Springs on Wednesday, August 18th. 15% of your check will benefit Team Dylan. We hope to see you there!

Dylan's Baptism

Dylan's Baptism was held on July 25, 2010 at St. Joe's. He did awesome! Everyone in the church was laughing when Dylan could not take his eyes off of the candle that was lit. And check out that outfit...He looked so cute in his white suit! Thanks to everyone that came out to celebrate Dylan's special day with us.

Happy 9 months Dylan!

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Pears and carrots and peas....oh my!!

Dylan has been doing really well with eating his baby food. He loves his cereal, and pears and sweet potatoes seem to be other favorites. After each bite he says "mmmmmm!!!" and gets really excited when you are feeding him. It can get a little messy at times though.....

Dylan and mommy

Dylan went to an ice cream social with other families hosted by the Down Syndrome Association of Cincinnati. His buddy Eli was there and he was happy to see him!

Poopy Party!

Thanks to everyone who came out on Sunday to celebrate with Dylan at his "poopy party." Cheers to no more surgeries.....and to happy pooping!!!

Drumroll please.....

Ladies and gentlemen, I am proud to announce that on Wednesday, May 12th, Dylan had his first (of what is sure to be many to come!!) poopy diaper!!

To some this may seem gross, weird or just plain interesting...but to us, it means the world. As many of you know, Dylan was born with a condition called imperforate anus. For 7 months he has had a colostomy bag, and for us, the main thing this surgery means is FREEDOM! Dylan can now roll around on his belly, take a bath, etc....who would have ever thought that poop could be so exciting??!!

Dylan again did not cease to amaze us with his guts, determination and quick recovery. He really does make us so proud!!

7 months old

Yesterday was my birthday, and today Dylan turns 7-months old. Time goes by so fast and I love the personality that Dylan is developing. I love hearing stories about "what Dylan did today," and WOW can he go on and on "chattering." He always makes me laugh!

Dylan goes into the hospital on Sunday to get prepped for his next surgery which is taking place on Monday, May 10th. Sunday is also Mother's Day, and unfortunately, Shannon will be spending it in the hospital with Dylan. I know there will be many more Mother's Days to be celebrated in the years to come, but for now, I just wanted to wish Shannon a Happy Mother's Day. We are all so proud of you....these past few months I know have been challenging, but one day Dylan will grow to know how lucky he is to have you in his life!

-Shelly

6 months old!

Can you believe it? Dylan is 6 months old today....how quickly time flies. This Friday, Dylan goes back to the surgeon for a check-up and hopefully schedule his next surgery. This past week Dylan celebrated his first Easter, and also got to go on his first Easter egg hunt!

Opening Day

Ladies and gentlemen, I now present to you, our newest Cincinnati Reds fan. Play Ball!!

Could he get any cuter??

Dylan is almost 6 months old.....and he gets cuter and cuter every day!

Introducing Mr. Chatterbox.....

Who, me?!!.....

If there is anything that Dylan loves even more than ceiling fans, it would have to be "talking." We call it "telling stories." Once he gets going, he can go on and on and on. I wonder where he gets that from? (grandma??....kidding!) He is pretty savvy too....at 5 months old he already knows how to have grandma dial for him and he leaves people voicemails! He's not particular either.....he'll talk to people, his toys, himself.....whoever will listen. He's just so cute though, it's not really hard for him to find an audience when he is telling stories!

Warrior Dylan

Dylan has received a new blanket from Jaxson's Blankies for Babes. The blankies are for kids of all ages with life threatening illnesses. I encourage you to click on the link posted and check out all of the children that have been recipients of blankets. It will truly touch your heart.



I've also posted a link on the right side of the blog that links to Jaxon's site. Dylan's blanket arrived in the mail addressed to "Warrior Dylan." I couldn't agree more with that....our little fighter that brings smiles to our faces every single day.

Dylan's new trick

Dylan is feeling a lot better. Earlier this week he had a sore throat and couldn't make a sound when he cried or tried to talk.He was not running a temperature, but was very congested. We took him to the doctor and after some antibiotics, he was feeling much better.

He now has his voice back and today he was telling us everything that he hasn't been able to say for the past few days!

Guess what?.....Dylan rolled over today!!!! He rolled over 2 times this afternoon when we had him on his mat. It was so cute!

On a side note, Dylan's visit to the surgeon on Friday went well. The surgeon said that he is doing good and healing well, and his next surgery will probably be some time in May.

5 months!

Dylan is 5 months old today! He has been doing really well with holding up his head, and he is still changing every day. We are so proud of him and his progress....and 6 months will be here before we know it!

Happy Birthday Dylan!

Dylan and Dad

It's been a week since Dylan's surgery, and he is doing really well! He is back to his old self...smiling and laughing, playing with his Cat in the Hat, scanning all rooms for ceiling fans, and just being a happy baby. It's like he never even had surgery!

Thanks again for everyone's well wishes. Dylan is so lucky to have so many people praying for him.

Home Sweet Home!

We got discharged from the hospital yesterday and we were home by about 2pm. It feels so good to be home! While Dylan was in the hospital he kept looking up at the ceiling. I think he was looking for a ceiling fan! I fed him shortly after we got home and he kept smiling at me. I really think that he is happy to be home too.

We put him in his usual spot, the corner of the couch, and he looked up at the ceiling and saw the ceiling fan and threw his arms out and yelled. He was so excited to see the fan!!!

We go back to the surgery clinic on March 5 to see the surgeon and he will see how Dylan is healing and decide then when his next surgery will be.

Dylan-surgery update

Dylan's surgery went well yesterday. He is doing well and hopefully will be released within the next few days. He's still a little groggy, but slowly but surely getting back to his old self.

Even after going through surgery, Dylan is still a funny little guy. He has monitor stickers stuck to his chest, and while holding him last night, after only looking away for maybe 2 seconds, he took one of the loose stickers from his chest and stuck it to his cheek. Even with everything he's been through, he still manages to make us laugh!

Here is a picture of him hanging out in the hospital. As you can see, the Cat in the Hat makes everything all better!

Prayers for Dylan

This Thursday Dylan is having surgery. We ask that everyone keeps him in your prayers!

I came across this poem earlier today, and it made me think of Dylan and how much we have to look forward to with him.

Thank You God

© Shirley J. Stankiewicz

Sent straight from heaven up above
Came an angel for me to love
To hold and rock and kiss good night
To wrap my arms around real tight

To cuddle & nurture and watch him play
To kiss his boo-boo's all away
To keep him safe and warm & count all his toes
To hold the tissue for him when he blows his little nose

To laugh at his jokes, to clap as he sings
To tell him all the joy in my life that he brings
To clean up his play dough, to pull his legos apart
To pin up his drawings and tell him it's art

To watch his first day of school on the bus all alone
To fight back the tears as I make my way back home
To applaud real loud when he's in his first play
To help him with his homework at the end of his day

To adore & cherish and watch him grow
To guide and teach him all that I know
To see him through good times & help him through bad
To share in his happiness and cry when he's sad

To hold him close and be by his side
To watch him through life as my heart fills with pride
To help him with decisions, the best that I can
To know that someday he'll be a fine young man

Happy Valentine's Day

Today is Dylan's first Valentine's Day. Besides that, today is also grandpa's birthday. Dylan and grandpa got to hang out lots when Dylan was first born and in the hospital, and they quickly became best buds. If Dylan could talk, he would probably tell grandpa he can't wait to get a little bit older and go fishing, sled riding, play some baseball, etc...But for now, he will settle for giggling at grandpa when he sings him lullabies, and making grandpa laugh with his funny faces.

Happy Birthday Grandpa! I Love You.
Love, Dylan

Look who's boss

Dylan seems to have taken over grandpa's favorite chair! This is his favorite spot at grandma and grandpa's house. This is where he sings with grandma while she rocks him to sleep, and this is also his favorite spot to lounge and look for...you guessed it...ceiling fans!

Baby, it's cold outside

I think we are all very aware that this winter has seemed to drag on forever. The good news is, Dylan has the perfect outfit to combat the cold! If they made these for grownups, I'd totally wear one! I love this picture...I bet Dylan wishes he could say: "Really grandma, enough with the pictures already. I can't move. Where are my hands and fingers I love so much??....and my legs?? This is exhausting being an Eskimo."

I Can, Can You?

Martha from the Down Syndrome Association of Cincinnati stopped by and brought with her a really nice basket full of goodies. The basket contained a blanket made by a grandmother of a child with down syndrome, a picture frame, and for Dylan....a life size Cat in the Hat which he absolutely loves!

Also included in the basket was a really cute book called "I Can, Can You?" This book is a board book full of babies and toddlers with down syndrome going about the business of their lives. I love that it shows children with down syndrome participating in typical early childhood activities. Very cute!

Ceiling Fan!

If there is one thing that Dylan absolutely loves, it has to be....ceiling fans!


Once he catches a glimpse of a fan, it has his complete attention. Yesterday was Dylan's 4-month birthday. Happy Birthday Dylan!

The best thing

I can remember the day that Shannon told me that I was going to be an aunt. I was so excited and instantly started envisioning all of the things I wanted to teach my new niece or nephew. I couldn't wait...and now I can't believe how AWESOME it is to be an aunt.
Since Dylan was born in October, I cannot even count the amount of conversations we have had about how much joy he has brought to our family. Our family went from ordinary to extraordinary. I have been home more in the past 4 months than I think I have been in the 10 years since I have been living in Louisville. Visiting Dylan is always my last stop before hitting the road again, and it never fails-from the 8,000 songs I have on my iPod, when I am driving this song always comes on. "You are the best thing"...I don't think it could be more fitting. We are so proud of Shannon and Tony, and so in love with Dylan. He truly is the BEST thing...and I couldn't be more proud to be his aunt!
-Shelly
(You may have to hit the "pause" button on the player at the very bottom of the page when viewing the video so you don't have 2 songs playing at once)

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Meet Dylan....

This video is a collection of photos from Dylan's first few months. It is amazing how much he has changed in such a short amount of time! This song we call "Dylan's Song"...when he was born, whenever traveling back and forth to the hospital, it always seemed to be on the radio. So, we welcome to the world Dylan Nicholas. Enjoy!

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