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.

Thursday Evening Update.....

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..........

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

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

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.....

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....

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.