Colin Charles Domanico 8/31/06 - 9/21/08

This is a post that I dreaded that I would never have to make... I have no quirky lines... On Sunday September 21, 2008, Colin passed away at home. His heart had all it could take and decided to rest. Melanie and I want to thank all of you for experiencing this journey with us on the blog. Your support through comments were truly uplifting and inspiring. We also want to thank his doctors for never giving up on him and giving him as much as a life as possible, especially Dr. Kvesilis. As a final note for the blog, I created a video of his life. The pictures will stream by fast, but as you can imagine it is hard to cram so many photo's of our little boy into a 4 minute song...... If you would like to contact us, you can leave a post on the blog as we will check it from time to time or you can email me at Sugrlof95@aol.com. Colin is now at peace with god with no pain, walking, eating, smiling, laughing, and growing.....All the things he had such a difficult time with battling here with us. Melanie and I have now taken his pain and he is free. He is up in heaven with his Great Grandma Agnes playing board games....Talking and eating baked goods with his Great Grandma Marge....Playing with a cap gun that his Little Great Grandpa Domanico got for him.....and waking up to his Big Great Grandpa Bould singing "Good Morning Mr. Zip Zip Zip.............Mommy and I love you so much Colin......

A Weekend Of Football.....

Colin had an action packed weekend of football, both college and pro. On Saturday he watched a pitiful Syracuse Orange football team get whipped by Akron...They have hit rock bottom so he may not wear the jersey too much as he can't take the ribbing from his Uncle Brian (an avid Uconn Husky fan). Here is the photo:

(PS - Thanks to Uncle Alex and Aunt Jamee for the jersey)

Then today, me and Colin dressed up in our Buffalo Bills uni's for their first game of the season against Seattle. Well, for the first time in Colin's life, the Bills won the opener. Colin was excited as he wore his new Trent Edwards (QB) jersey. Daddy still has his old McGahee jersey until he gets to the store to buy a new one.

Colin's Birthday Party

Sunday was Colin's second birthday party. We had a party at our house for Colin and he got a lot of really nice gifts. The weather was perfect and the food was good. Instead of putting on pictures, I wanted to make a video of Colin's year starting with his first birthday. It is a little over 3 minutes long and has music to it so watch the volume on your speakers if you are at work. Oh yea the pictures at the end are from his party....Happy 2nd birthday buddy......




PS - The video is fixed now... I had it marked as private....

Michael Phelps??

Well maybe not.....Yet.... Today Colin had his 2nd pool therapy class. He made us so proud as he works so hard and never complains. Nothing ever comes easy to him, (except yelling) but he has more determination then Mel and I will ever have.... Here are the photo's from poolside.....

Colin is just letting everyone know who's boss....He likes to intimidate before he gets in the pool....

Colin looks like he is sucking up to his teacher....He got excited when it was his turn...

It appears that Colin is romancing his teacher......He has all the ladies eating out of his hands.... (actually she is stretching is legs)

Standing in the Pool.......

Colin on all fours on a mat.....Lift that head buddy!!!

Here is a little video to finish off the post......Stay tuned for next week he will learn knee dives and flip turns......

Good Week

Sorry for the lack of updates but, it's not because Colin hasn't been happy. In fact, it's just the opposite!! Colin has given more smiles in the past week than he has in his entire life!! All day long Mommy gets smiles. I always adored my serious Colin but, happy Colin is so much fun!!

Colin started Pool Therapy last week and he did fantastic! We are so proud of him. He was in a new place with a new therapist and the pool was huge!! I stayed by the pool the whole time but, he barely looked at me and he had so much fun. I am amazed at how fearless he is (of course he did go through 3 heart surgeries so a pool is a walk in the park).

Colin has been on a 22 hour feed for the past week and so far so good. It's been nice to take him places without the food backpack. His mysterious temps are getting better-we haven't hit 102 in a week!! Colin is sleeping great again too.

This weekend is Colin's 2nd birthday and a huge milestone. This past year has been extremely difficult for Colin and we are so happy that we are able to celebrate another birthday. Colin is getting a Wiggles cake!!

Another huge event for Colin is coming up in a few weeks. He will be the ringbearer in Uncle Alex and Aunt Jamee's wedding. He tried on his tux jacket this weekend and it fit perfectly (except for the arms!!) It's a 2T and I was nervous that it would be too big but, he looked so handsome. Colin also proved that he's sneakier than we all think this weekend. Uncle Al and Aunt Jamee babysat Colin for a few hours and he managed to get away without taking a nap!! When they put him down he threw up a little and then smiled-well he got picked up after that!! He has them wrapped around his finger!!

On a sad note, Colin's favorite sports talk duo, Mike and the Mad Dog broke up after 19 years, so he can no longer watch them on YES. The picture below is an old photo of Colin watching his buddies........

Colin Has An Announcement !!!!!!!!!!!!!!!!!!!!!!!!!!

Ok....So Colin has been holding a secret over the past 16 weeks....as you know with his poker face it is really easy to do....but now he is ready to share the secret with all of our friends.......

Colin is holding ultrasound pictures..................

Of his baby..................

Brother..........YAY.....

Yes...there will be another scream in the house at 2 a.m. Melanie is due Feb 2nd so....hopefully it won't look like this on the way to the hospital.....

PS - Mel and baby are doing very well....
PSS - The level 2 ultrasound showed that the baby has a 4 chambered heart and a pulmonary artery....a more detailed Fetal Echo is scheduled in 1 month.

Almost Over

Vacation is almost over......I have been having fun in the pool and playing. I really haven't napped too well but I go to bed early for Mommy and Daddy. Here are two photos showing some of the fun I have had......

Eating a marshmallow....

Showing my teeth....

A week in CT.....

On Friday, we traveled down to CT to see Nanna and Grandpa and all my cousins for the week. Grandpa had a surprise 60th B-day party for Nanna (well sort of a surprise) on Saturday and all my family was there, second cousins and even Papa and Grandma came from Syracuse.....Here are some of the photos.....

Nanna

Family Photo with Nanna, Grandpa, Aunts & Uncles and Cousins

Me and my CT Cousins....

Grandpa and Papa discussing the specifics of my new pool at home.......

The party really got going so I decided to have a few brewski's.....

Turns out I am a lightweight.....

Boy...The next morning I had a rocking headache and needed to sport my cousin Russell's aviators....

I then thought it would be a good idea to just chill in the pool on a raft and work it off....

Finally Relaxing

PS- Just for the record and so nobody calls DCF on my parents, there was no beer in the bottle, I did not have a sip, and Daddy was right next to the raft in the pool to protect me from drowning......The material on this blog is just for humor and to torment me when I bring home my first girlfriend when I am older.......

PSS - We are going to show some more family members more often as they are me and my parents true support system. Look for it in the coming weeks and months ahead.....

Candy Candy Candy.....

Colin loves the Andes...no not the mountains...the candy.... Check it out...

This is the first thing he has eaten in sometime without gagging or throwing up.....Actually he hasn't allowed much into his mouth other than liquids.... What is funny is that we actually have been feeding him pedialyte all day because he had a temperature and now he actually wants to eat.....Interesting....Maybe there is hope if we cut down the hours he is fed by pump that he will eat real food.....

Happy Days Are Back..........For Now......

Colin is back in a good mood...for a few days at least so we decided to post some pictures again....Sorry to all who check it everyday....we promise to post more often......

Isn't he getting so big?? He's up to 25# and 30 1/2" long!! Colin has gained 7 lbs and 3 1/2 inches in length since we've been home from Boston!! Now we were told (again) at our Friday office visit that Colin's echo is still unchanged and his heart doesn't look any better. But, all Tim and I heard was blah, blah, blah because Colin has never looked better to us than he has the past couple of weeks. So many positive things are happening for Colin:

1) He's growing like crazy.

2) He loves his therapy and is gaining strength and endurance every session.

3) He is so interested in all of his toys and will play and play all day.

4) He is on less diuretics than he has been on in a year.

5) He is getting the most calories that he has ever gotten in his life (and tolerating this).

6) He is throwing up a lot less (about 2x/day) and most of the time he gags himself.

7) He is able to tolerate being on his stomach.

8) He is starting to babble a lot-sometimes too much at 2 am!!

So, Tim and I are really encouraged by all of Colin's progress. We know that he is getting better. We can just tell by everything that he is doing. Plus, we have to keep reminding each other what we were told by Boston before we left....it is going to take a LONG time for Colin's heart to show improvement. Dr. Freed stressed that we needed to have a LOT of patience.

Enjoy the pictures and the video!!

Look at me standing!!

Look I'm starting to move!! (wait for the little smile at the end....wait for it....wait for it...)

Hop on Board

Today, we played with Colin's little animal toy train and he hated it. Every time we played the music he started to get upset. His face was priceless so I had to take a video..... I know its mean but for someone who doesn't show much facial expression, it was nice to see..... Needless to say..Colin did not want to hop on board the animal train.....





PS - It has music so turn down you volume......

A Busy Weekend.....

What a busy weekend Colin had....Well sort of......Yesterday, Mommy and Daddy had a wedding to go to so we dropped Colin off at Grandma and PaPa's house for the night..... Unfortunately, Colin's feeding bag broke and poured food on the pump causing it to fail. We came home from the wedding and called Lincare to bring us a new one.... While we were waiting, Mommy tipped over the pump and all the milk came out and it started working again, so we called and cancelled the delivery. (Which was big because it was going to take up to 2 hours to get one...).

Then this afternoon, Mommy went with her family to see her grandfather in a nursing home so Colin and Daddy got to spend some time together. This time, the weather was awful and we got some nasty thunderstorms....

Soooo.. Daddy decided to protect us and we built a.........FORT.... Check it out........

Update......

If Colin was spotted looking like this in Vegas he would either be taken for an unbelievable poker player or an extra for a police lineup on CSI. What do you think?

Colin slept until 6:30 this morning. We were so excited. He is still doing well with his therapy. Colin missed Daddy this weekend-he was at Uncle Alex's bachelor party. He is very excited to spend Saturday night with Papa & Grandma because Mommy & Daddy have a wedding to go to.

Another positive-It has officially been 1 week since we went down 1.5 ml's on Colin's Lasix. It is so exciting that he was able to handle that decrease in his medicine. AND...Colin will be wearing a tuxedo in Uncle Al's wedding. The tux they put on him was a little big but, with a few minor adjustments it will be fine and he will look so handsome. Can't wait to see him in it!!

The Roomies Reunited!!

Colin and his buddy Jack were reunited a couple weeks ago for a playdate. It was so nice to see both of these boys feeling better and playing together. They were both very sick when they were roomies at University Hospital. Jack had just been through open heart surgery at the time and they both have mickey buttons so, they have a lot in common and a lot to talk about. Although the Mommies were much more chatty!! Colin can't wait to hang out with Jack again. How cute are they???

4th of July Weekend

First off....Sorry for no posts over the past 2 weeks....As I said before, when he is not happy, we just don't feel like breaking out the camera.... So you can guess that he hasn't been the happiest kid in the world.... We are not sure why, however we have noticed that he has been getting 102-103 fevers in the afternoon after his second dose of Lasix. We talked to Dr. K today and we are going to go down on his dosage for all 3 times a day as his body might be a little on the dry side.... We shall see...... Here is a picture of grumpy today.. (PS - Daddy did his hair).... Ok...now that we got that out of the way, we had a busy 3 day weekend. On Friday, Aunt Dani and Uncle Darin had a big party at their house... Colin did great and even stayed up until about 9:00. On Saturday, we hung around the house and rested after the big party and then on Sunday we had another party during the afternoon. Here is a picture of mommy and me before Friday's party.....
Ok...Sorry Kathy for not posting earlier.....We are all glad that you got home from CA safely...

Sing Us A Song......

You're the piano man.....Sing us a song tonight....... Colin was in a good mood today after being cranky for the past 5 days (which is why we haven't blogged). He seems to go in cycles as in the beginning of the week he is in a great mood until about Thursday and he remains cranky until Monday morning....Weird...... Here is a little video....

Here is a picture of Colin passed out in his crib in his new PJ's. Mommy is the freak who puts the socks on him...He sort of looks like one of his grandpa's (papa) in those black socks....

Playing Ball

Yesterday after Colin's therapy, Nanna and I started playing catch with Colin with his big ball. After a few tosses, he started belly laughing. Of course when we got the camera out he didn't laugh quite as much but here is a look.....

Colin The Celebrity

Tim and I didn't realize that Colin's blog still has the following that it had when he was in Boston. Recently, everyone I see tells me they are still checking out the blog and following Colin's journey. We even had a complete stranger recognize Colin from his blog (she is a friend of a friend and said she would recognize those cheeks anywhere!!) Lucky for us that we get to smooch them all the time. Uncle Alex and Aunt Jamee bought this shirt for Colin and it's definetely true!!

You are definetely a big deal Colin!!!

Our Little Superman.....

"Faster than a speeding bullet, more powerful than a locomotive, and able to leap tall buildings in a single bound"

Fun Pictures with Colin

Me and my future best man

AAAAAAhhhh

I love brushing my teeth.....

"I can't stand all this traffic....Why do they do road construction during the day?? WHY?"