Wednesday, July 30, 2008

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 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...)

Thursday, July 24, 2008

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......

Sunday, July 20, 2008

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........

Monday, July 14, 2008


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!!

Thursday, July 10, 2008

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???

Monday, July 7, 2008

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).... 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...