Update from the Doctors and Turkey day

Colby had a follow up with his surgeon on Nov 17th. We were a little nervous going into the appointment since his weight gain hasn't been great since surgery. We were concerned if that was an indication of his healing. As usual Colby was charming the nurse with his cute little smile. I think he figures if he smiles real cute then they won't stick him? After a short exam Dr. Christian said his SATs looked good and she was pleased with how his incision was healing. Overall she thought he was doing great. We asked if he was still on track for his next surgery after the first of the year. She is hoping his shunt lasts until summer to give him more time to grow. She explained to us again that the larger shunt was used to try and prolong the time between surgeries. I guess we will see when Colby wants to have his next surgery b/c he sure seems to be on his own schedule....

There have been times since his surgery that we questioned the decision to use the larger shunt. It is hard to tell if the larger shunt has made his recovery harder but if it allows him to remain stable and out of the OR longer then it will be worth it.... We just need to continue to focus on the big picture and not all of the little battles we seem to face daily.

Colby also had a follow up with his cardiologist on Wednesday the 26th. Since his feeding still haven't gotten better we were nervous going into this appointment as well. We were certain that more aggressive measures would be necessary to help him gain wait. He has been gaining 3-4 ounces per week since his surgery which is less than the 7 ounces a week he was averaging before surgery. Becca takes him weekly to the pediatrician for weight and SAT checks. Last week they suggested we put him back on fortified milk which we have tried in the past and it wasn't pretty. It took us about 2 days to remember why we quit doing the fortified last time. Our sweet little angel turns into a little monster when we add formula to his milk.... He is miserable.

As soon as Dr Liske walked into the room I asked if a feeding tube was an option. For those that have been with us for a while the tube was one of our biggest fears. So you can imagine if I am asking for it that his feeding must not be good. Despite all of the ups and downs we have been through over the past 4 months I am confident that his lack of appetite is the worst. There isn't anything worse than trying to force feed a baby. He just looks at us and grins with his lips sealed shut or he cries when the bottle touches his lips.... I'm not sure which is more frustrating.

Back to the doctors appointment.... Dr Liske didn't respond to my question initially. He went on with his examination and look at all of the data in Colby's file. After he finished looking him over and listening to his little heart he told us he doesn't think a feeding tube is necessary at this point. He said his weight gain numbers weren't great but at least he is still gaining which is great. He then looked at Becca and said "I'm not sure what it is you are doing for Colby but whatever it is must be the right thing for him". He commended her on how well she has done caring for him. I know I have said it before but I will say it again.... My wife is the BEST mom in the world. Our boys are so blessed to have her as their momma. So on this Thanksgiving day one of the many things I am thankful for is my beautiful wife and the mother she is to our boys. Doctor Liske went on to say that Colby continues to improve between each visit which was great news.

I guess the uncertainty of his progress is part of the challenge but apparently he is doing good. The doctor told us to stop focusing on his progress daily and focus more on his progress weekly. Again, this goes back to looking at the big picture. As parents we want him to have a great day everyday and that just isn't reality.

This Thanksgiving has been one filled with many emotions. As we look at our boys we see our biggest blessings. Brody continues to make us laugh each and every day with his crazy antics and Colby makes us smile every time he looks up and grins. It is in those moments of smiling and laughter that distract us from the pain and suffering Colby has already been through. I don't think a day passes that we don't look at Colby and wonder how he can be so happy despite the road he has traveled and with the road he still faces. Those little smiles are what we draw from when we begin to get caught up in the weeds of all the things still ahead. Since Colby is still on house arrest Becca and I celebrated part of turkey day apart which allowed her time with her family and gave her some one on one time w/ Brody which is always entertaining. During my time alone w/ Colby today i had some time to reflect on how God has blessed us in so many ways and and to see that we have so much to be thankful for. We never could have imagined how Colby would have impacted our lives. Take away the obvious medical issues and then you are left with the following blessings: the joy he brings, the strengthening of our faith, the support of so many family members and friends, the numerous "strangers" that have blessed our lives and we now have them as friends, the dependency Becca and I have grown to thrive on from one another, a stronger marriage, the clarity to see what a blessing Brody is, the change in perspective, the way we now treasure the little things, a greater appreciation for the mother and care giver Becca is. We have come to realize the fragility of life and therefore each and every day I am able to spend with my family is a day to celebrate with thanksgiving. Thanks to each and every one of you for your support and prayers and for your love we are thankful.