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.