Buffalo Wild Child......

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...

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.......

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?

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......

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....

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...

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.