Dr's Visit Update

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.....

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....

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....

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

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!!

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....

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!!