Drew's News (Colin's Little Bro)

Update...

2009-11-01T16:21:00.001-08:00

So it's been a real long time since we last posted. A lot has been going since Colin's B-day. We had a golf tournament for Colin which raised $2,000 for the local Ronald McDonald house to help parents with kids who are sick in our local children's hospital. The brand new Golisano Children's Hospital opened in September and they are in the process of updating the Syracuse Ronald McDonald House so we wanted to help out. We passed Colin's one year anniversary and continue to miss him everyday.

Lastly, we continue to watch Drew grow up, play, laugh, eat, crawl and now cruise behind things and all around the couches. We're hoping that he's walking by Christmas. Yesterday was Halloween.. Drew dressed up as a race car driver. On Friday, they had a costume parade at his daycare. You can see a photo below of me and Drew. We had a party at his cousins friday night and then on yesterday we took him to several houses and had some family over. Plus you add in the hour time change and he is really thrown off.... I also posted some pictures of him that I took tonight... Enjoy....

Happy 3rd Birthday Colin....

2009-08-31T14:42:00.001-07:00

Today is Colin's 3rd birthday... Please say a prayer for him. We know that he is eating birthday cake with his great grandparents.

He looks so cute and happy in this picture. We love you buddy and miss you so much. So many of your friends and family will be together at your golf tournament this weekend to celebrate you, Colin.

Happy Birthday.

Love,

Mommy, Daddy, & Drew

New Do.....

2009-08-27T16:34:00.000-07:00

Drew's hair was getting a little crazy so Grandma cut it. Take a look......

Doesn't he look like Jim Carey in Dumb and Dumber.... Drew was not a fan of getting his hair cut, in fact he cried the whole time.....

Much better all messed up....

In other news... Drew stood up with help from the couch yesterday..... We dropped the crib height immediately.... He also got his first cold but has handled it well. All the snots... Jeez....

Back from the Beach.....

2009-08-17T15:55:00.000-07:00

So our week long trip to Ocean City, NJ is over.. Drew spent probably 3 hours on the beach the whole week. First off, it was really hot and humid when we gotthere which made him kind of cranky out on the beach. He wouldn't sleep because he wanted to crawl and eat sand all day... Like a friend of ours said it was like alligator wrestling trying to keep him off the sand. We then got smart as grandma went and bought him a small pool to let him lay in on the beach which worked well. Take a look at the beach pictures.....

"Not sleeping in the sun tent"
"Having fun in the air"

"Baby Pool"

At night, we would go out to the boardwalk and either eat junk food, walk in stores or watch his cousins on the amusement rides.... Drew even went on one by himself (well with daddy)...

"Holding on with two hands"

"One hand like a maverick"

These pictures were taken on our last night there...

"Drew and Family"

"Cousins"

Almost Vacation.....

2009-08-02T15:10:00.000-07:00

So this upcoming Friday we are leaving for a week to go to the Jersey Shore... Drew can't wait. He even tried on Colin's scopes to make sure they looked good on him (he thinks he is gonna meet some ladies)... Take a look...

Drew...

Colin (The original ladies man)...

He also had some good times jumping in his little jumper... Take a look at the video...

Also this week, Daddy went to Citi Field while on work in NYC to see the Mets play the Colorado Rockies. I can't wait to go with him.. He did get to see my cousin Meghan and Uncle Brian. Check out the picture of Meghan and Daddy with Mr. Met....

On The Move.....

2009-07-24T17:01:00.000-07:00

So Drew this week has started to do the army crawl all over the place. He goes after everything now... My favorite is when he scoots over to the AC vent and leans over it. His hair blows straight up and his face and hands start to freeze... He loves it... Here are two videos of him moving around. Doesn't he look like the old man's dog on Family Guy?

6 months old, trip to CT and hanging out with my family

2009-07-20T15:38:00.001-07:00

Drew is 6 months old today...it went by so fast! Other than some diaper rash he's doing great. Drew has been really busy. He spent time in CT and had his first pool party!! He's getting ready for his Jersey shore vacation in a few weeks. He's always happy & smiling.

Drew is creeping on his stomach all over the floor these days. It's only a matter of time until he will be on all floors and Mommy and Daddy will be really busy! It has been so exciting for us to watch him move around. Enjoy the pictures....

So happy to be with Daddy

Playing with Brady (one of his only boy cousins)

First time in the pool with Daddy & Brielle

Cousin Karen came all the way from NC to make Drew laugh

Exhausted at the end of the party

Hanging with Jenna & Kelsey

Just chilling with Riley & Ava (Yes-he has on a pink bib....Daddy was not happy about that but, Mommy forgot his manly bibs)

Kaylee, Meg, Paige & Aunt Laurie (notice a pattern here-Drew has a lot of girl cousins!)

4th of July Weekend.....

2009-07-07T16:54:00.000-07:00

Drew had an action packed weekend and his Nanna was here to capture it all with her camera so here are a ton of photos.....
Playing with his blocks...
Standing on his brothers memorial brick at the butterfly garden......
Enjoying his bath.....
Enjoying a crummy weather day in Alex Bay on the St. Lawrence River... It was cold and windy although the nice Italian dinner Grandpa took us to warmed us up.....
Sitting in the backyard while dinner was grilling....... (plush lawn)......
On the swings at the park......
Relaxing.......
With Nanna and Grandpa.......

The week that was...

2009-06-28T16:26:00.001-07:00

This week Drew got tossed from daycare because he had 2 loose poops in a day (it's their policy). Although, I am not sure if the policy really works because a little bug went around the class. He is happy, but poops a lot. We took him to the doctor and she just said it should go away within the week. They did weigh him and he is now up to 15 lbs 8 oz....... So this morning after I fed Drew, we were watching TV in our room and I fell asleep, only to find out that so did Drew.. Take a look.... (Don't worry.. It is a king bed and mommy was watching the whole time so I didn't roll over him).

He now loves sleeping on his stomach....

So this afternoon when we got home Drew was rolling on the floor on a blanket and decided to roll himself up like a little pig in a blanket...... (don't worry we were watching.. no need for the DCF).....

Sitting Up!!!!!

2009-06-23T16:41:00.000-07:00

So this week, Drew has started to sit up on his own... He is still wobbly and can't sit up from a lying position but he is getting better.... Take a look....He is playing with his little bongo drums.... Oh yea he also has a tooth about to bust through..... Hopefully soon......

Birthday Weekend Pictures.....

2009-06-14T07:16:00.000-07:00

Friday was daddy's birthday, so we had a small party for him on Saturday..... Check out the picture of me and my cousins....

These other pictures are ones that daddy took of me on Sunday morning... Like my shirt?

First Video Cameo.....

2009-06-13T05:40:00.000-07:00

Drew loves to look at himself in the mirror......

Trip to New Hampshire

2009-06-07T14:23:00.000-07:00

Over Memorial Day weekend, we all went to NH for Drew's twin cousins 1st birthday's. Drew slept 3 of the 4 hour car ride. We only had to stop once so, we stopped in the small quaint Vermont town of Wilmington to eat at a good little diner called Dots. Below is a picture of Drew at Dots. And his bib does reference that he is single... He loved it probably as much as the waitresses loved him.....

After Dots, we stopped off the campground where his other cousins and grandparents were staying for the weekend. He made himself at home right away. He even left his mark on his Nanna and Grandpa's bed as he peed out his diaper.... Whoops..... Sunday was Jenna and Kelsey's party which was a great time... Drew can't wait to dig into his first birthday cake..... Notice how much fun he was having.....

Look at that adorable face....he's so happy and he has his big brother's beautiful hazel eyes. Drew had his 4-month check up and he's doing great! He's 14 lbs 14oz and 22 inches long. He started rolling a few weeks ago and he's also working on some teeth. He started cereal but, he's not a big fan of it. He never wants to sit still long enough to eat! Drew is a really good boy at daycare-his teacher's love him!!

Drew at 4 months old.....

2009-05-16T15:14:00.000-07:00

So this post is just a bunch of random photos from the past two weeks. Drew is doing well and this week heads off to daycare for 3 days while Mommy goes back to work. I get to drop him off on Wednesday for his first day..... Anyways here are some photo's to enjoy....

Drew with his cousins at Gianna's communion.... (I told mommy he shouldn't be wearing his hood in church).....

A close up of him passed out.... Was the homily that bad?

Sitting in his bumbo chair looking away in disgust as the Mets provide Santana with no run support......

Standing tall after his bath.........

I Want to Thank the Academy...

2009-05-14T18:16:00.000-07:00

Click on the link to see my amazing achievement...

http://news.cnnbcvideo.com/?nid=MKYLGlZ0S0z.M1mMu2zBNDE0NzQzMjI4&referred_by=17000223-iVh7eax&p=um

I am so honored! I have never won anything before! Thanks for nominating me Jamee!!

We promise to post pictures of Drew this weekend.

Drew Hangs with the Fellas....

2009-05-03T13:55:00.000-07:00

Drew is getting bigger every day! He is such a happy little boy. Drew starts daycare for 3 days a week this month. He can't wait to meet some new friends. Last week, Drew played with Jack and Tucker. Finally-some boys to hang out with!! Mommy had fun too with Kelly, Casey and Jamee. We all had a great time.

The three boys.... Drew on left, Tucker on right, and Jack in the back....

If that hair gets any longer he will look like the front man of Flock of Seagulls....

Chillin on the floor....

Drew was not amused with his Godmother Jamee.....

One Busy Weekend.......

2009-04-20T15:54:00.001-07:00

So this weekend was really busy. Saturday was the Heart Walk. We had a great turnout including family and friends from all over the northeast. Look at this great looking group all walking for Colin!!

All walkers wore T-shirts that we had made... The back of the shirts said "Forever in our "heart logo", Colin Charles Domanico with his dates and heart defects"... (Thanks to the Fragale boy's for modeling during the walk)...

We even had onesies for Colin's little cousins and of course Drew. Here is a picture of Drew's......(The Shirt has a picture of Colin and reads "Strolling for my brother Colin).

Here is a picture of some of the cousins wearing their shirts.....

Here is a picture of the three of us after the walk... As you can see in the picture, a painting of Colin hangs in the background... That portrait was done before he passed away as a gift from a cousin.......

We raised a lot of money in memory of Colin. Thanks again to all who donated-it meant a lot to us. A special thanks to Jaclyn and Chris who raised money on their own. We all surpassed our goals. After the walk, we had a picnic up on Oneida Lake near our house to thank everyone for their support. The weather held up without a drop of rain. Paige, Gianna, Brielle and Meg all had fun playing wiffleball.

On Sunday we had Drew's Baptism. He wore the same outfit as Colin and even wore his cross. What a cutie....

Here is a picture with Drew and his Godparents Jamee and Alex.....

A picture of the cake.....
It was a great weekend and a celebration of both our beautiful boys!! Thanks to the grandparents for the delicious food and to all our family and friends for your support.

Opening Day!!

2009-04-06T12:34:00.000-07:00

Well Nanna is in town so we have a camera handy that takes good pictures... Drew got a bath last night, which like his brother he absolutely loves......

Also, today is opening day, so like years past with Colin, Drew and I settled in to watch the Mets play the Reds.... Santana on the hill. Thanks to Nanna for Drew's Mets outfit....

Colin's Team for The Heartwalk

2009-03-21T06:02:00.000-07:00

I know Tim said that he was only going to post monthly but,we lied!! Like Tim mentioned before, we have a team set up for Colin for the Heartwalk. We are so happy that so many friends and family members will be there to support us and remember Colin. The link is posted below to the American Heart Association to make a donation in Colin's name. We know that so many people have donated to different organizations over the past few months in Colin's name so, please do not feel as if you must donate. We just wanted to put the information out there for those that cannot walk or are interested in donating.

http://heartwalk.kintera.org/syracuseny/colincharles?faf=1&e=2294689098

It's been nice for us to plan for the Heartwalk since the past few weeks have been filled with difficult memories of Colin in Boston. The events of last year play over and over in our minds like a movie. It's been six months today since Colin passed away and we miss him so much. Drew can't wait to walk (stroll actually) for his big brother.

March Update

2009-03-15T17:43:00.001-07:00

Sorry for the delay in posting, but from this point forward I will probably do a monthly update... Drew has been such a great baby and really has helped us continue on... Everyday he continues to grow into a cute little boy.... Although he spits up 30% of his feedings (why can't we have a child who can keep his food down???) he eats like a champ and we may start him on some rice cereal. Mel is busy with Drew but is also going to be going back to work part-time so we are in the process of getting daycare started. As for Drew and I, we are mainly getting ready for NY Mets Baseball and Syracuse in the NCAA tourney....Drew is getting baptised April 19th and on the 18th we are going to have a big crowd walking with us in memory of Colin at the Heartwalk here in town... It will be a perfect weekend (and hopefully nice weather). Enjoy the photos....

PS - Thanks Aunt Jamee for the pictures... (my camera is broken).

Remembering Colin's Battle....Congenital Heart Defect Awareness Week

2009-02-09T09:40:00.000-08:00

Congenital Heart Disease is considered to be the most common birth defect, and is a leading cause of birth-defect related deaths worldwide. Despite the fact that CHD affects millions of families, a relatively small amount of funding is currently available for parent/patient educational services, research, and support.

We miss you so much Colin....we remember you this week and always.

Can You Tell They Are Brothers????

2009-01-29T16:22:00.000-08:00

Here are two pictures of the boys.. Can you tell which one is Colin and which one is Drew??? Yea I know the hair gives it away....

Drew's News Maiden Voyage.....

2009-01-25T14:19:00.000-08:00

Well, we are going to try and do this blogging thing again with Drew. We arrived home on Thursday from the hospital and Drew has been doing really well. Sleeping all the time and eating like a champ. Last night he only woke up once to eat at 1:30 am. and then at 6:00 am. Drew has brought us much joy, albeit bittersweet. This time around it is much easier. We only wish his big brother was here to enjoy him with us. Anyways, I am having writers block so here are some photo's from the first couple of days. It has been action packed with visitors from grandparents, aunts/uncles, cousins and friends. Enjoy......

His outfit on the way home from the hospital.....

First nap in the bouncy chair.....

Sleeping peacefully.....

One of the outfits Dr. K, Colin's Cardiologist, gave us... Its funny because the bib says little squirt and shortly after the photo during a diaper change, he pee'd on it... Get out the dreft....

His little coolie is so small, the newborn diapers tend to slide down. Dad will take credit for this little mishap..... Get out the dreft....

Colin's Little Brother

2009-01-21T13:39:00.000-08:00

Yesterday on inauguration day...Drew Colin Domanico was born at 5:02 in the afternoon. He weighed in at 6 lbs. 5 oz. and 19.5 inches in length. Drew is doing great and everything has checked out... Yes we had a saturation check and today he had an echo.... Everything is perfect... He looks like a little old man...... I will be starting a blog for Drew but haven't done so yet. It will be a Drew and Colin blog....... Here are some photos for you to look at... Yes he looks an awful like Colin...

Just after birth.......

Ahhh the sweet sound......

Resting....

Happy Holidays

2008-12-07T14:38:00.000-08:00

It's been a while and we know some of you have still been checking for any updates..... First of all, thanks for the thoughts and prayers.... Secondly, many of you know that Melanie is due for our second son, Drew Colin Domanico, on Feb. 1st. She is doing well and so far everything looks great. We have had every test/scan possible but, no amniocentesis. In talking with our friend Terri the other day, she convinced me to post an update regarding Drew and she wanted to see a 3D picture. As you can see in the photo, Drew looks a lot like Colin even though his hand is blocking much of his face. The holiday season has been going by really fast. Melanie and I went to Florida for Thanksgiving for a much needed break. Plus we really didn't feel like celebrating with everyone without Colin. So we spent turkey day laying on the beach in Siesta Key and going to Boston Market for a Thanksgiving dinner. It was great... We wish we could do the same for Christmas. Colin's memorial mass was perfect... A great tribute to a perfect boy. There was about 300 people who showed to celebrate his life. We had a great party afterwards downstairs with great food donated from friends and local businesses. Colin's grave was all decorated for Halloween and is really decorated for Christmas. We miss him so much but, we also know and feel that he is with us all the time. I guess we may be doing a blog for Drew but, it won't be the same..so stay tuned for further updates. In the meantime, Happy Holidays.

Tim & Mel

Memorial Mass

2008-10-05T17:07:00.000-07:00

Not sure if anyone is still checking, however we will be having a memorial mass on November 1st at 11:00 a.m. for Colin at the following address:

Sacred Heart Church

8229 Brewerton Rd

Cicero, NY 13039

Following the mass will be a lunch served in the basement. Please feel free to attend if you would like. The more the merrier to celebrate Colin's life.

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

2008-09-22T19:36:00.000-07:00

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.....

2008-09-07T17:12:00.000-07:00

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

2008-09-02T17:42:00.000-07:00

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??

2008-08-27T15:13:00.000-07:00

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

2008-08-25T01:53:00.000-07:00

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 !!!!!!!!!!!!!!!!!!!!!!!!!!

2008-08-18T13:41:00.000-07:00

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

2008-08-15T09:06:00.000-07:00

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.....

2008-08-10T18:17:00.000-07:00

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.....

2008-08-06T14:18:00.000-07:00

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......

2008-07-30T14:57:00.000-07:00

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

2008-07-24T16:21:00.000-07:00

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.....

2008-07-20T12:35:00.000-07:00

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......

2008-07-14T14:03:00.000-07:00

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!!

2008-07-10T06:48:00.000-07:00

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

2008-07-07T15:02:00.000-07:00

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......

2008-06-24T13:26:00.000-07:00

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

2008-06-19T18:26:00.000-07:00

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

2008-06-19T14:59:00.000-07:00

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.....

2008-06-18T15:06:00.000-07:00

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

Fun Pictures with Colin

2008-06-17T17:42:00.000-07:00

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?"

Colin is Feeling Better!!

2008-06-17T06:18:00.000-07:00

Colin is feeling much better-we are sooo relieved!! He got rid of all of his excess fluid with just his regular diuretics-thank God!! Tim and I were starting to get nervous thinking we may end up back in the hospital. Thanks to Dr. K for helping us out (as always). Tim called him at 6 am on Friday morning when Colin had his terrible temp and his wife answered his cell phone (sorry Mrs. K!) but, of course he called us right back. We tried to go a month without seeing Dr. K but, only lasted 2 weeks-I think Colin missed him!!

I know this is late but, I didn't get a chance to post since I've been sick but, I wanted to say Happy Father's Day to Tim. He is the best daddy in the world to Colin and somehow manages to work full-time and always be with us when we need him most. We love you Daddy! And Colin says Happy Father's Day to Papa who always gets up early with him to watch the Wiggles when he sleeps over his house and Grandpa who always takes him for long walks and Uncle Brian (The Godfather) who drove all the way to Syracuse to see him when he was in the hospital just a few weeks after cousin Kaylee was born. Colin loves you all!

Mommy is grateful to Nanna for staying with us this week since Mommy had a bad cold and didn't want to be around Colin too much so he wouldn't get it and Grandma for cleaning her house for her. (I should get sick more often!!)

I just want to take a second to brag about Colin. Yesterday, his Occupational Therapist told me that even if Colin is sick or exhausted (which is the case most days) he still works harder than any other kid she works with. He has been such a sick kid for so long and his heart is still not functioning properly but, he still pushes himself. I know that he's a tough kid but, it's so nice to hear other people say it. It's that fight that is going to get him better. Mommy and Daddy are so proud of you Colin!!

Happy Fathers Day!!!

2008-06-15T16:51:00.000-07:00

So this past weekend has not been Colin's best which is the reason for the delayed posts. It started on Thursday, Colin was extremely cranky and it continued through the night. We thought it was molars so we let him crank. Anyways at about 2 in the morning we had enough of him sleeping for 15 minutes and then crying for 15 minutes. We took him downstairs to give him a bath because he was extremely warm, and when we checked his temp, he was 105.8 warm. We quickly gave him a bath to cool him off. On Friday we went to the pediatrician for blood work, and then to Dr. K's office. Heart looked the same and figured he just had a virus. So over the weekend, he has been sweating like crazy all night, and really hasn't been peeing with the diuretics. He has started to look a bit puffy so we are now concerned. He hasn't been cranky, just tired (he has been sleeping great). Last night he even fell asleep in his jumper. Take a look.....

He still managed to have some fun as Nanna and Grandpa Domanico were in town this weekend and Papa and Grandma Corsello came over for dinner Friday night to celebrate Daddy's B-Day. Thanks to Sue for making a great cake....

Call of the Wild????

2008-06-10T18:01:00.000-07:00

Take a listen to Colin tonight while he should have been sleeping. Careful not to have the volume up to high...... This is his teething cry before a tooth pops through....

PS - Shortly after this video was shot, Colin got a dose of Tylenol....

Sleep? What Sleep.....

2008-06-08T16:40:00.000-07:00

Actually, this was taken after he had slept for about 2 hours tonight and he woke up to hang out. He was all smiles so I wanted to take a picture of him....

Hot Fun in the Summer Time.....

2008-06-07T11:34:00.000-07:00

So today daddy and I are spending the day together because mommy has a shower and bachelorette party to go to. We have had so much fun and the house is trashed......Note the sign on the door I left to warn mommy.....

Anyways, since it is 93 degrees out and humid, daddy bought me a pool for me to wade in the backyard. So after filling it up, putting sunscreen on me, and dressing me up, we ventured off to the backyard for a swim..... Well, I didn't really care for it and basically froze like a popsicle in it because the water was on the cold side......Daddy didn't let it warm up before tossing me in...... Here are some of the pictures from my polar swim......

So the question is, are either of my grandpas going to see me swimming in this dinky pool and decides that I need a BIG in-ground pool so I can swim on a raft with a virgin banana colada HINT HINT......

Dr's Visit Update

2008-05-31T04:08:00.000-07:00

Just wanted to give a quick update regarding Colin's dr's visit. Not too much going on. Dr. K didn't do an echo and said again that it will be months before we will see any big changes in Colin's pressures/right ventricle. So...we still hope and pray that everything gets better. Colin is not retaining fluid and now weighs 22 1/2 lbs!! He's getting to be a chunker again. He needs to start growing some length again!! Colin has been warm for a while (100-101 degrees most days) and he was warm and red in Dr. K's office. Dr. K said this is actually a good thing because people with bad cardiac output are always cold and before Colin went to Boston he was always about 2 degrees colder than normal!! So, Colin just needs to grow, grow, grow!! He has been doing better with his wretching but, after we told Dr. K this Colin decided to projectile vomit on him during his examination!!

Feeding update-Colin is now drinking almost an entire juice box a day from the straw!! It is so exciting. He is even starting to take some food off a spoon. He doesn't gag/vomit anymore when he gets food in his mouth. He's starting to realize that food is not the enemy!! Same thing with moving around-he has been on his stomach a lot more and if he wants something across the room he rolls to it!! He is finally learning that moving isn't such a bad thing either. Baby steps all the way!!

Off to see Dr. K today.....

2008-05-30T09:08:00.000-07:00

Colin is off to see Dr. K again today....We will update if there is any news from the visit. Colin has been much happier over the past few days after two of his 2-yr molars popped through. He has been eating and smiling.......Here are some funny pictures taken throughout the week....

This is a picture of Colin sleeping... The funny part about the picture is that this was during his physical therapy training. He was working with his teacher on rolling and they were playing. She rolled him over and was waiting for him to roll back....and he never did...He fell asleep....I guess we need to find a time that doesn't interfere with his nap time........

This picture was taken during his nightly bath in the sink...We gave him a rubber ducky to play with....As you can see, it didn't have much of a prayer with a teething Colin....

Morning Cup O Joe....

2008-05-24T15:54:00.000-07:00

This morning Melanie was drinking her iced coffee in front of Colin when he reached out for the straw..... He opened up his mouth and sucked the coffee right up and he loved it....He kept going back for more..... Yes we know it is not good for him, but it was nice to see him drink something by mouth for a change........ Here is a video of it:

Anyways, sorry for not writing on the blog lately, but he is still in a bad mood. He moans all day and wont sleep even though he is exhausted....... He does sleep great at night, which is a huge relief. We really think it is his teeth as he has his two year molars coming in. Here is another cute picture of Colin with his pants on his head.....

Back from CT but, still cranky....

2008-05-15T05:44:00.000-07:00

Colin had fun this weekend but, we found out that he is not a big fan of the 4 hour car ride to CT. The Wiggle videos didn't even make him happy! He's back to being cranky again so, we switched him over to Pedialyte this morning and he is smiling now. Again-this all points to him being a little too dry. We have an appt with Dr. K tomorrow and we will come up with a plan. Here aresome pics of Colin over the weekend...

Being a good boy in Church!

Hanging out with my cousins Meg, Paige & Kaylee.

Exhausted from the weekend....

Quick Update

2008-05-08T15:42:00.000-07:00

Sorry for not posting for awhile but, Colin had a rough weekend. He didn't sleep at all and everyone was very cranky. After a few days of being off the Methadone/Ativan and adding Pedialyte to Colin's feeds he is a very happy baby!! The happiest we have seen him in a very long time. We increased his feeding rate a lot this week and he's holding steady. Tim and I study his belly, feet and eyelids for water retention. If we knew how to check for an enlarged liver we would but, Dr. K hasn't taught us!! He won't even if we ask him because he knows we would be poking Colin's abdomen every 5 minutes!! He also told us not to weigh Colin daily but, we still do!!

His therapies have all started up again and Colin is doing great. Last fall I would listen to him scream and cry during every session and now he smiles and plays and I don't hear any cries from him. One of Colin's therapists told me that this week was the first time she had ever seen Colin smile and it made her want to cry. Colin even ate some of a french fry during his speech therapy. Tim and I are praying and hoping that Colin has turned the corner. We are off to Connecticut this weekend. We'll post some pictures when we get back.

Buttoned Up!!

2008-05-02T17:06:00.000-07:00

Today, Colin had his tube replaced with a much smaller and cleaner Mic-Key button. Colin had one of these last fall but, that was one that went into his stomach and this one goes to his jejunum. They were able to change it out and thread it down without using any sedation which was awesome. It took about 20 minutes start to finish. After that we went over to see his buddy Dr. K and all the friendly nurses in the office. Colin loves going into the office but he was a little ticked off today as he was tired and his stomach area might have been a little sore. Anyways, no big news out of the visit as we didn't do an echo, which was fine with us. He looks good and we keep creeping up on the food. Soon we will get him down so we don't have to feed him 24 hours a day. Anyways, I don't have a picture of the new button however I took a video of him standing and playing with his bouncing zebra this morning. Take a look.......

He continues to have good leg strength- he just needs to get a little more upper body strength so he isn't as wobbly. Then we need to get him bending his knees so he will start to walk......

PS-That's mommy's hand in the background-nervous that Colin will fall!!

No New Tube for Colin....

2008-05-01T06:08:00.000-07:00

Colin is happy today but, mommy isn't!! We took Colin to get his feeding tube replaced and guess what??? No one ordered the right one!! We were so mad. Why does Colin have to do everything twice??? It's rescheduled for Friday IF they get the tube in by then-we will be calling to confirm this time!!

We bumped Colin's feeds up to 40 mL's/hour from 36 since he was off his food for the tube change and we are trying to make up for the lost calories. I'm still crossing my fingers that he will tolerate the increase.....

Dr. K is still wonderful to us though! Don't know what we would do without him. Can't wait for the day that he tells us that Colin's echo shows signs of improvement!! Colin is officially done with his Ativan & Methadone. He has been released from the drug clinic and we are so happy.

AND...we have received so many gifts/donations from family and friends and we are so thankful. We would especially like to thank all of the children at The Gingerbread House Daycare Center for contributing their Lenten gift to Colin this year. In a few months, Colin will be in to personally thank all of you!!

Hopefully, Colin can show off his fancy new tube on Friday!!

Buffalo Wild Child......

2008-04-27T05:41:00.000-07:00

We took Colin out to dinner at Buffalo Wild Wings last night and he had a lot of fun. He was such a good boy! Well, Colin has been doing better since we saw Dr. Kveselis on Friday. We are keeping his food at the same rate but, we decreased his Lasix.

He stayed at Papa and Grandma's house on Friday night so mommy and daddy could get some much needed sleep! He also slept great last night!! His fever spiked yesterday to 102 in the afternoon. Hoping that it's med related like everyone has said and that (fingers crossed) it goes away this week when he is finally off his Methadone and Ativan. Wednesday, Colin gets his J-tube replaced to a mickey J which means no big tube hanging off him!! We are hoping to do the entire procedure with just a big dose of Ativan!! Oh yea...and he doesn't need to wear the oxygen during the day anymore......

Check out these photo's taken this morning.....Can you tell who Colin is rooting for today at Talladega?

Why We Avoid Taking Colin to the Pediatrician...

2008-04-25T07:04:00.000-07:00

Sorry for not posting for a long time but, Colin has not been feeling well. He has been very irritable and his fever spiked higher than ever yesterday-103! We decided to take him to the pediatrician and (fingers crossed) hoped for a normal ear infection or strep throat. As always, there was no easy explanation for this high fever so where do you think the pediatrician sent us??? Any guesses???

Of course-Upstate ER!! AND...after 3 needle sticks and squeezing Colin's limbs for every last bit of blood all of the results came back.....NEGATIVE!! Of course they did. Although, they did show he was a little dry which Tim and I already knew. We had already gone down on his diuretics a few days ago. We noticed that he wasn't sweating or crying any tears but, we were afraid to give him too much fluid because then he blows up. Our nurse told us they did not know what was causing the fevers but, they do know that Colin is really cute (of course we already knew that!) We didn't get home until 11:30 last night and we are all a little cranky. Colin got Pedialyte all night and no diurectis and he was drenched with sweat this morning and slept really good and his temp this morning was NORMAL! We go to see Dr. K at 1:00 to figure out what the new plan is. Colin did get lots of visitors-all of the residents that know Colin all too well. Colleen the Child Life Specialist got Colin a Wiggles video!! Even the admitting clerk came in to our room to say hi and she remembers us from our Nov and Dec ER visits!! It is not a good thing to have the local ER staff know your child!! We were happy to go home but, would have liked to see our favorite 4A nurses!!

One more thing-Colin's sats were 94 when we got to the ER so, they didn't hook him up to any monitors or O2. That was a first!!

I know everyone continues to pray for Colin but, he needs some more. We'll keep everyone posted on how he is doing.

What a day for a walk.......

2008-04-19T17:16:00.000-07:00

Today Colin strolled along in a 3 mile walk for the American Heart Association fundraiser. We were approached by several of our co-workers at The Hartford who mentioned that they were going to fundraise and have employees walk. They then asked if they could walk in Colin's name and of course we said Yes! Our office raised approximately $18,000 and had maybe 70 people walking representing The Hartford and approximately 75 percent wore signs pinned to their back with the following:

As you can see when Colin arrived he certainly was the hit of the party as many of the people had been following here on the blog while we were in Boston....And of course our family came in to help push Colin along the path.......

(From back left to right: Uncle Alex, Aunt Jamee (sunglasses), Papa. Middle Row: Grandma, Tim (Dad), Nanna, and Grandpa.....Front row - Melanie (Mom) and of course Colin)

So the walk started and Colin stayed nice and calm soaking in the 85 degree day with his foot up on the dash.......

And when the walk was over and he made all 3 miles....He let out a......

BIG SMILE

Thanks to all who supported Colin at The Hartford especially Sue A, Cyndee S, Cindy M, and Barb V and all of those who donated and/or walked for Colin. PS-He did all of this with a 102 degree temp!! Yes-he still has those temps and they were spiking the past few days. Dr. K doesn't even know why!!!

Blue Suede Shoes?

2008-04-16T17:32:00.000-07:00

Well there not really blue suede shoes but Colin finally has a real pair of sneakers that fit his little size 2 foot. Grandma bought them for Colin yesterday at the mall and he loves wearing them. He has even been standing on his own as long as he has something to lean on. Check'em out.....

Standing on top of the world.....for a little while....

(bonus question..who sings the song with those lyrics...)

Are those Colin's shoes or Teddy Ruxpins?

I like pudding......

2008-04-15T07:11:00.000-07:00

Yesterday, we gave Colin some chocolate pudding at the suggestion of Dr. K and once again, he proved to be right. Colin ate some off a spoon, didn't throw up or gag, and then decided to play with it and make a mess. It drives mommy nuts to see a mess on his tray but we have to start somewhere. We also took his oxygen off his face for a while so he could feel like a normal kid. (ignore this Dr. K). Colin does fine without the oxygen and does not turn blue. Enjoy the photos.

Colin acting like a typical man.....taking control of the remote.....

I think he is saying his prayers ......

Sunday's Best....

2008-04-13T08:33:00.000-07:00

This morning I got some good photo's of Colin playing at his table. Yes, he is wearing the same outfit as 4 days ago, but I swear it was washed. The problem is that his feeding tube prevents him from wearing normal clothes, so you are going to have to deal with the same outfits until spring/summer......

PS - Colin slept through the entire night last night. From 7:15 p.m. - 6:30 a.m. Waahoooo. Colin is also jacked up to watch the Masters today in High Def.... Colin is rooting for Trevor Immelman because just like Colin he also had surgery earlier this year to remove a tumor.....Although.. Daddy is rooting for Tiger......

Growth Milestone...

2008-04-12T17:01:00.000-07:00

Colin was officially weighed at the dr's yesterday and he has hit 20lbs!! AND...we were reassured by everyone at the cardiologist's office that it is not fluid gain!! It is very exciting to see Colin gaining weight. He seems to have more energy and get a little happier each day. Feeding continues to be an issue but, we just keep trying. Today he ate a wagon wheel (one of those Gerber finger foods) and he practically ate the entire thing!! So...baby steps towards big goals continue.

Please say a prayer for Elijah...he's been sick and is supposed to have heart surgery on Tuesday.

Thursday Evening Update.....

2008-04-10T16:08:00.000-07:00

Today, Colin had another busy day...he went for two walks, watched 10 episodes of the Wiggles, and enjoyed a trip to Wegmans with mommy and daddy. He even squeezed in time tonight to enjoy a Lorna Doone as seen in Exhibit A below. Well I guess he tried...he ate some of it, then gagged, but he didn't throw up. He definitely does not like solids going down his throat so that is something we will have to work on.

Colin also found out today that he will be working with our good friend Heather Milligan. She will be his Occupational Therapist. We are excited because Colin got along great with her while we were in the hospital and she is doing us a huge favor because the waiting list for ot's is very long right now. Colin can't wait to play with Heather!!

So we have been getting scared that Colin is holding onto fluid. In the morning he wakes up with slightly puffy eyes. We also tossed him on our scale and he went from 19.6 lbs last Friday to 20 lbs today. We called Dr. K and told him we were weighing him daily and he said "Don't do that". He doesn't want us to do anything that stresses us out which ultimately causes stress for him. The bright side is we have been calling the office and leaving messages and not calling his cell phone and interrupting him. We will see him again tomorrow for a weight check and blood check to make sure his blood is not too thick.

Cute photo I took on the stairs today.....Does he look puffy in the face to you?

Colin enjoying his Lorna......

Exhibit A

Pictures from today..........

2008-04-08T17:12:00.000-07:00

Colin was in a good mood today so we broke out the camera........

Check it out...the red hair is making a comeback....It just needed a little sunlight.....

Colin having fun standing....well sort of...he leaned against the couch a bit.....As you can see mommy is scared because she wouldn't move her hand......

We had steak and baked potatoes tonight and we decided to give Colin some mashed up baked potato with a little milk and sour cream......Needless to say..he didn't like it very much and wore it instead of eating it.....

Yea there was definitely a bath after this mess.....

We also took Colin to Wegmans today for some groceries.. He LOVED it.. He smiled the whole time...Everyone thought he was so cute...Even a 79 year old lady who told Colin she knew how he felt because she also wears oxygen at home......

Colin also had speech therapy today with Kendall. She was very impressed that he was drinking out of a sippy cup and straw....

Discovering Falling Water

2008-04-06T16:22:00.000-07:00

Today during Colin's bath, he enjoyed running his hands through the falling water. At first he didn't quite get it as he tried to catch it, but then he realized he could play with it. It looks like he will learn to wash his hands at a young age.....

Visit with Dr. K

2008-04-04T16:15:00.000-07:00

Colin went to see Dr. K today. Echocardiogram is still unchanged from before surgery but, that is ok because it will take time for his right ventricle to get better. Colin's liver is still much smaller and his nose is not red anymore (yes-no more rudolph!!) Small baby steps forward-Colin gained 2 oz and grew in length 1/4 inch in 1 week! Colin is now 19.6 lbs and 28 1/4 inches long. This may not seem like much but, Colin has not really grown in almost a year!! All the weight that we thought he was gaining was all fluid-this is real weight gain!! Growing is the best thing for his right ventricle. AND-he is on minimal calories right now and needs extra calories for his healing. We got the ok to go up 1 ml per hour on Colin's feeds. Oh-almost forgot-Colin's sats were 99%!!

We're having some issues with Colin's therapists. Colin's PT is going out on maternity leave (I am so sad because she was fantastic) and we have to switch OT's because I cannot take Colin to the center for his therapy. I was told by our Service Coordinator that the list for PT's/OT's is very short and that they don't just want to put anyone with Colin because of his complex medical issues. (Heather Milligan are you listening?? Would you come out of retirement for Colin?? Even if it is only for a little while before you move?? Just teasing-Jack needs his mama!!) The good news is that his Speech Therapist is great and she will be working with us to get Colin eating and talking soon.

Keep those prayers for Colin coming....(and for his mama to get some patience...)

Smiles All Around.....

2008-04-02T16:02:00.000-07:00

Tonight I was playing with Colin and his big stuffed dog that he got when he was in the hospital from Uncle Alex and Aunt Jamee, and he loved it. He was all smiles and at one point, even belly laughing. Unfortunately, this will be the closest thing we will have to a dog because we WILL NOT be getting a real one.......Check out the photos & video......

Colin and his dog Wags....(I hope that is not copywrited by The Wiggles)

We've Already Been Home a Week....

2008-04-02T06:41:00.000-07:00

We are finally feeling settled in. It took a long time!! Colin is sleeping a little better but, not great. He still has fevers on and off. Overall, he is doing well though. Yesterday, Colin and I went for a walk. He hasn't been outside in so long!! He loved it but, he threw up during the walk-all over himself. It was the only time he threw up all day!! I can't believe that I didn't bring anything for him to throw up into!! He's getting stronger and less cranky every day.

Happy Opening Day!!!!!!!!

2008-03-31T17:20:00.000-07:00

Today is a special day every year for us baseball fans..... Today Colin and I enjoyed the start of the baseball season by watching our NY Mets play the Florida Marlins.....As to keep tradition, we dress up in our Mets gear and get ready to watch the game......As you can see in the photo, Colin was all jacked up to watch the new look Mets.......

Colin looks amazed by the heat that one Johan Santana is throwing.......LETS GO METS....

Colin Isn't Very Happy....Does He Miss Boston??

2008-03-30T06:25:00.000-07:00

No pics today because Colin has been very cranky since we got home. They sent us home with a very "aggressive" weaning schedule and Colin has not really slept (either has mommy and daddy!) since we've been home. Therefore, the entire Domanico household is very cranky!! It's terrible-Colin just moans all the time and cannot get comfortable. Colin did have one good night and slept right through but, his feeding pump broke at midnight and Tim and I were up until 2 am waiting to get a new one!! We are very happy to be home but, it has been a very difficult transition.

Does anyone know if they have infant rehab facilities?? (ha ha)

ps-Thanks to Terri for answering her phone during stressful times!!

Breaking News.....

2008-03-25T17:39:00.000-07:00

BREAKING NEWS: Colin Charles will be leaving Children's Hospital Boston tomorrow and head west to return.....drumroll...... HOME..... to his house with his mommy and daddy...........The doctors are cautiously optimistic that he will be OK and get better....... We are excited to get home and get back to normalcy...... Below are some pictures that were taken throughout the day....

Colin sitting up smiling......

Learning to use a straw.... Now he is ready for a Slurpee......

Playing with my blocks......

Happy Easter!!!

2008-03-23T19:03:00.000-07:00

Happy Easter !!!

Love,

Tim, Melanie and Colin

Oral Aversion?????

2008-03-22T16:32:00.000-07:00

And we were told once upon a time that Colin had an oral aversion.......I wouldn't call the below video an oral aversion would you?

Quiz Time......

2008-03-22T10:53:00.000-07:00

It's time for a quiz here on the blog....Below you will see two video's taken today......Each question is multiple choice so choose wisely.....

QUESTION # 1

Colin in the above video was happy because:

A) We are one day closer to baseball's opening day.

B) He just got his Methadone.

C) The Easter Bunny is coming tomorrow.

QUESTION # 2

Colin was not happy in the above video because:

A) Papa left today after spending the week with Colin.

B) He is having Mexican tonight for dinner.

C) The Methadone has worn off.

A Good Day....

2008-03-21T15:24:00.000-07:00

Colin had another good day in the stomach distention department. It remained soft and mildly distended. His stats are in the upper 90's however he is on a liter of oxygen. His heart rate is nice and low. Colin, however has been moaning the last two days non-stop. Today after they gave him is adavan drug, he was happy as hell, smiling away and laughing. So now the doctors think all the moaning is from drug withdrawal and they are going to stop weaning the methadone and adavan. He has continued to throw-up once in the morning and once in the afternoon. However he smiles right after he does so. All medicines are now taken by mouth and not IV. The new plan is to get us back home sometime in the middle of next week to either the local hospital or hopefully home.

(This was a smile however it looks like he is yelling......)

Rollercoaster......

2008-03-20T07:29:00.000-07:00

Well Colin had his Cath yesterday to put the hole between the Right and Left Atrium's. After the Cath, it appeared that it may have not of helped so we were down and out again last night....Then this morning, for some reason during his examination, Colin's liver was half the size it was two days ago and they are not sure why. He is eating through his tube and they stopped the Milrinone last night to see what would happen. So maybe the hole has made a difference? Last night we discussed potential for Heart/Lung transplant with Dr. Bacha, and mentioned that we weren't there yet, but he would talk it over with the transplant team. We are hoping that we don't have to go that far.........

(photos taken this morning....)

2008-03-18T04:21:00.000-07:00

Colin will be heading to the cath lab AGAIN!! Colin had another echo yesterday which showed that the Milrinone only provided a marginal improvement to Colin's right ventricle so, the plan is to take Colin to the cath lab and put a hole between his atrium's. This will help Colin's right ventricle by reducing more pressure, hopefully allowing his liver to shrink in size and stop all the GI backup. His oxygen sats will be lower due to the hole (in the 80's) but, the hole can be closed in the future after he gets a chance to load up on calories and grow, besides lower sats are better than right ventricle failure......The cath will be either today or Wednesday, depending on availability.

Yes...I know Colin is a die hard NY Mets fan, but I guess with all he has been through and the great doctors and nurses he has, he decided that he would wear a Boston Red Sox hat to show his appreciation. As Uncle Brian pointed out, he won't smile however until the hat is off his head.........(this was a photo taken 2 weeks ago after mommy bought the hat at Fenway Park after we took a tour....I wanted nothing to do with it, however i like the look of the hat....)

Waiting Game

2008-03-17T05:37:00.000-07:00

Colin has been back on the Milrinone for 2 days now and does look much better, however he has wretched a few times since being back on it. He slept the majority of the weekend, but when he woke up he was smiling and happy. They continued to come down on the methadone and adavan so he will be a little bit more awake now. Today we will see the doctors again to see what the plan is next, if there is one. I will update if we get any news.....

More Prayers are Needed.....

2008-03-15T06:53:00.000-07:00

Yesterday we received some bad news from the doctors. Yesterday morning , Colin began to throw up bile again just like he did before surgery. His oxygen levels also decreased. He threw up several more times that morning and they decided to do an echo to see if pressure had changed within the heart. Well, they don't believe the pressure changed much, however, they noticed that the right ventricle is still failing. They brought Colin back into the ICU so they could put him back on Milrinone and Dopamine, which helps his heart contract better. We were told that it could take a long time for the right ventricle to recover. We were also told that it might never recover.

They are now going back to the drawing board to find out what, if any, could be done...... They did say that his heart just may need more time on the drugs to overcome the past damage. We are not sure what surgically they may need to do, if any....... Colin is a fighter, and we just hope that he still has fight left in him to overcome this next obstacle. Please fire back up the prayers, because God has to listen sometime right?

A Smile Appears.......

2008-03-12T12:30:00.000-07:00

Well today we continued to get better news. Although he still has a fever which comes and goes, he also has been drinking by mouth, his stomach has softened as he has been pooping and getting all the air out of it, and HE SMILED......Melanie was giving him his breathing treatment and he broke out in smiles.

The Scar Appears.....

2008-03-11T18:07:00.000-07:00

Sorry for the lack of updates...I hit a rut of not updating the blog and I apologize. Since I am back in Syracuse, I received pictures today via cellphone and uploaded them to the site. Colin is doing better and is healing, however he has still had a fever that comes a goes. It is really frustrating us because if he didn't have a fever, we could be out of the ICU and home sooner. They conducted an Cat Scan yesterday to see if he had any signs of infection within his body. The Cat Scan did not show anything major so they have him on antibiotics to try and fight it off. Overall, he continues to look good and they weighed him today and surprisingly he did not lose any weight......

Day one of recovery.......

2008-03-06T16:57:00.000-08:00

Well today they extubated Colin and he was doing well. They also pulled his left chest tube out. He was doing well, until they noticed that his left lung looked cloudy and they were affraid that it would collapse, so they put him back on a CPAP machine. He is doing really well however and looks great. Dr. Bacha and Dr. Freed both were very happy with his progress. Lets just hope he doesn't get a flat in the left lung. Of course, since Colin was doing so well, Nanna stayed with him so Melanie and I could go take a tour of Fenway Park, however we got the news that the left lung looked cloudy 5 minutes before the tour started, so we got in a cab and went back. Maybe tomorrow......

Moving On......

2008-03-05T20:02:00.000-08:00

Well, this evening we all decided (doctors & us) to skip the 3rd surgery because they didn't feel that the odds were very good, and even so if it did work, would it make a difference. After seeing Colin's legs last night after the Cath they just weren't sure how much more he could go through. This wasn't an easy decision, but neither would have been sending him back in. We are now leaving it up to God to keep the pressure down in his right side. Currently it looks good, but hopefully it doesn't start to rise again. Tomorrow morning they will take the breathing tube out, and start to pull some of the tubes and lines still in him. All the hardcore drugs are stopped and now they will just give him the methadone, because there is no doubt he is addicted. I will post new photo's tomorrow with the tube out. In the meantime check out the photo I took today. Doesn't it look like he needs to have a girl by his side?

Decisions...Decisions..........

2008-03-04T19:25:00.000-08:00

Well today Colin had another 5 hour Cath procedure in which they took pressure measurements and did complete a few stents to the upper left lung. The good news is the pressure has dropped in half since before the first surgery in the Right Ventricle. The bad news is the blood clot returned to the shunt that was put into the lower left lung. This is fairly rare when shunts are involved because they supply the blood to the region at a higher pressure. Well Colin continues to be a one man band and he clotted. Again this is due to the extremely small vessels that had minimal blood flow for the past year. We now have a decision to make on whether to put him back into surgery on Thursday. Dr. Bacha said he thought we should for one final last ditch effort, in which he would completely "rebuild" the shunt and homograph. If it clots again than we lost the lower left lung forever. However, the chance of it working is anywhere from 10-20%. They would cath during and a day after to try and prevent it from clotting yet again. The surgery would only involve going in the back incision and considering he still has his Left Chest Tube in, Breathing Tube, IV's, Central Line and Arterial Lines in, it would be minimal to Colin but set his recovery back a few days. Colin would not need to be put back on bypass either during the surgery. This is a decision that Melanie and I have to ultimately make and we are split on the decision.

Saturday Update......

2008-03-01T08:33:00.000-08:00

Colin continues to recover from the second surgery. He is still currently sedated and paralyzed, however they are going to lift the paralyzing drug today. The plan on leaving the tube in for at least another day or so, because they really want to support the left lung. Dr's are pleased with his recovery once again. They will be pulling 1 of the 3 chest tubes out today. Colin's color is coming back and the red dot on his head is slowly starting to fade.

Surgery is finally done....

2008-02-28T18:35:00.000-08:00

Colin finally got out of surgery around 7:30 pm. It was another 6 hour procedure. Dr. Bacha had to go into both the front and side incisions again to get out the clot and gather the collaterals. He did end up shunting those collaterals to Colin's aorta. Although this doesn't help lower the right ventricle pressure, it will help the collaterals grow that are off in the lung. Then in a year Colin will have another surgery to hook them up his heart directly, as they tried to do 2 weeks ago. The shunted the collaterals because the believed that they would clot again because they are so small. Colin is looking very pale right now and bleeding a lot because he is on a lot of blood thinners so he doesn't clot. He will be getting a blood transfusion soon. We will update more tomorrow on the progress.

A smile.....

2008-02-27T20:07:00.000-08:00

Today, we got Colin to smile quite a bit after the drugs wore off after the cath. I was able to get a quick video of him smiling as you can see. Have you ever seen a child with a breathing tube down his throat smile? With all of this going on, he is still in a good mood.

PS - They keep saying that the red dot on his head is getting smaller and will go away. It better......

Surgery Update.......

2008-02-27T13:49:00.000-08:00

Well it is official that the surgery will be tomorrow to remove the clot. We just spoke with Dr. Bacha and they will remove the clot and either hook it back up or put a shunt in. Yes the shunt doesn't reduce the pressure in the Right Ventricle, however it will help the collateral arteries in the lower left lung expand as it will provide higher pressure to "stretch" them out. The other drawback is they would have to complete another surgery in 1 year or so to the hook them back into the heart and remove the shunt. That will be a gametime decision by the doctor. They will being doing a cath while they are doing the open heart. The other issue is he has to look weather he should go through the chest or back or both.... I will post again tomorrow when final decisions have been made.

Well we hit a big pothole in the road......

2008-02-27T09:53:00.000-08:00

Colin is out of his cath and doing well. He was in there for about 2 hours. It was much quicker than we expected so we knew something was up. They noticed that a bloodclot formed just past the conduit that they put in during the surgery 2 weeks ago. They are not sure exactly why it clotted but do have to do something about it, soooooo, he is going back into surgery tomorrow morning to remove the clot. They are also going to either do a cath during the surgery or a day after the surgery. That is to be determined. We have not yet talked to Dr. Bacha yet but he was in the cath lab when it was completed. He had another surgery to go to, but will stop in later so I will have more specific details later. As our Syracuse Dr. mentioned, we hit a pothole but we have not bottomed out the car yet.............

Quiz of the day.......True or False......Colin has had more drugs go through his body than Keith Richards, John Belushi, and Eric Clapton combined?????

Wednesday Update......

2008-02-27T05:37:00.000-08:00

Sorry for the delay in the updates. It has been a crazy few days. Well Colin just went back to the Catheterization Lab beacuse they noted in a lung scan that there was very little, if any, blood flow to the lower left lung. They are going to go in and try and open the narrowed vessels. The doctor said that this is a riskier cath due to the extent of work that they are going to do, and there is the possibility of tearing an artery, which would require immediate surgery. The good news is Dr. Bacha will be on standby to do so. Hopefully they can open the vessels up to allow blood to the lung so that it can reduce the pressure on the lower left side. I will update as the day goes on.

Still on the Vent....

2008-02-24T10:29:00.000-08:00

Colin is still hooked up with the breathing tube. They completed the bronchostomy yesterday and did find a lot of mucus plugs which block the air from fully getting into his lungs, however they did also note a compression on the left lower bronchus. They were trying to get a CT scan of the area to see if it is because something is pressing on it or if it is just inflamed. If something is pressing on the area, there is a good shot they may have to go in and move whatever it is. Having said all that, his lung looks 100% better than it did yesterday morning and they continue to pull out good mucus plugs. A CT scan is scheduled for tomorrow so we will update then.

Another Step Back......

2008-02-23T08:05:00.000-08:00

Well yesterday the CPAP machine did help open Colin's lower left lung lobe, it closed again overnight so they decided this morning to put the breathing tube back in temporarily. This time the tube is going down his mouth. Right now they are getting ready to bronchostomy. They have been pulling up a lot of junk from the breathing tube. We will keep you updated on todays events.

On another note - Please send some of your prayers for a child in the next room to us in the ICU as he was just put on an ECMO Machine, which is a portable heart lung machine.

Minor Setback...

2008-02-22T13:59:00.000-08:00

Colin suffered a minor setback this morning. The upper part of Colin's left lung collapsed so they had to put him on a CPAP machine as seen in this photo. The latest chest x-ray shows that it is improving so they shouldn't need to put a breathing tube back in. Colin still has a fever which reached 103 degrees today but they don't think it is a staph infection. Might be just some type of bug.

Breathing Tube is Out!!!!

2008-02-20T14:15:00.000-08:00

Today they took the breathing tube out and he is doing extremely well. All of the doctors are pleased with how much progress he has made after such a difficult surgery... As you can see he is even taking some pedialyte by mouth. The doctors remain very optimistic.

Monday Update....

2008-02-18T09:11:00.000-08:00

Colin had a nice and quiet weekend. He is moving and opening his eyes now however the breathing tube is still in. Today they are going to be backing off the morphine to get him to wake up a little bit more and take deeper breaths so that they can hopfully take the tube out tomorrow. This morning they took 2 of the 3 chest drains out. They think the other can come out tomorrow. Slowly but surely he is getting better and will soon be back to his old self again. They are increasing his feeds to full rate today as well. Hopefully he will tollerate it. Thanks again for all your comments as we really enjoy reading them.

Chest is closed!!!

2008-02-16T10:41:00.000-08:00

Today, Dr. Bacha closed up Colin's chest because he was doing so well. Everything went smoothly and he is beginning to look like our little boy again. They are going to start removing the paralytic drug and then shoot to remove the breathing tube within the next day or so. The doctors continue to be happy with his recovery.

Surgery Photos.....

2008-02-15T07:35:00.000-08:00

Well Colin is doing well and the surgeon was very happy with how well he actually is doing. They have him currently completely paralyzed so he doesn't move since his chest is open. Colin is breathing 100% on a ventilator until they close the chest. He has a slight fever so they have been cooling him with ice.

Below is a poem that we were handed when we arrived by a group of mothers who have kids born with various Congenital Heart Defects....The group is called Helping Hands Healing Hearts and they are a support group for RI and MA families. A link to their website is http://www.riheartgroup.com/. We thought this poem summed everything up extremely well and we thought the parents following the blog with heart children would enjoy it.

You passed me in the shopping mall…
(You read my faded tee)
You tapped me on my shoulder…
Then asked…”What’s a CHD?”

I could quote terminology…
There is stats that I could give…
But I would rather share with you…
A mother’s perspective.

What it is like to have a child with a CHD?
It’s Lasix, aspirin, Captopril….
It’s wondering…Lord, what’s your will?...
It’s monitors and oxygen tanks…
It’s a constant reminder…to always give thanks…
It’s feeding tubes, calories, needed weight gain…
It’s the drama of eating….and yes it’s insane!
It’s the first time I held him…(I’d waited so long)
It’s knowing that I need…to help him grow strong…
It’s making a hospital…home for a while…
It’s seeing my reward…in every smile.
Its checking his sats…as the feeding pump’s beeping…
It’s knowing that there…is just no time for sleeping…
It’s caths, X-rays and boo boos to kiss…
It’s normalcy…I sometimes miss…
Its asking…do his nails look blue?
It’s cringing inside….at what he’s been through.
It’s dozens of calls to his pediatrician…
(She knows me by name…I’m a mom on a mission)
It’s winters homebound… and hand sanitizer…
It’s knowing this journey…has made me much wiser.
It’s watching him sleeping…his breathing is steady…
It’s surgery day…and I’ll never be ready.
It’s handing him over…(I’m still not prepared…)
It’s knowing that his heart…must be repaired…
It’s waiting for news…on that long stressful day…
It’s…praying….it’s hoping…that he’ll be okay.
It’s the wonderful friends…with whom I’ve connected…
It’s the bond that we share…..it was so unexpected…
It’s that long faded scar…down my child’s small chest…
It’s touching it gently….and knowing we’re blessed…
It’s watching him chasing…a small butterfly…
It’s the moment I realized….I’ve stopped asking….why?
It’s the snowflakes that fall…on a cold winter’s day…
(They remind me of those…who aren’t with us today)
It’s a brave little boy…who loved Thomas the train…
Or a special heart bear…or a frog in the rain….
It’s the need to remember…we are all in this plight…
It’s their lives that remind us…we still need to fight!
It’s in pushing ahead amidst every sorrow….
It is finding the strength to have hope for tomorrow.

And no…we’ll never be the same…
It’s changed our family…
This is what we face each day…
This is…a CHD.

By Stephanie Husted