the amazing adventures of carson and kellen: Big steps!!

Monday, January 6, 2014

Big steps!!

Wow, where did the past month go??? We had a wonderful holiday season spent with family and friends! We made two trips to Rogersville to celebrate Christmas with the Bunch side and then later to celebrate Poppy's and Darrin's birthday. And celebrated with the Clark side in between those trips! Although the boys like their routine, they actually do pretty good when it gets a little off! They made it until 10:45 on NYE and were still functioning the next morning : ) We are so blessed by our families and friends and we have really enjoyed these past weeks! The boys are talking more and more and surprise us with new words every day! I think my favorite is 'Elmo'. We are definitely to that phase of 'it it's quiet...I better go check on them.' I never know what I'm going to find...whether it is the diapers strewn all across the room, toilet paper unrolled, or tampons unwrapped, pulled apart, and scattered throughout the bathroom and bedroom. But really, they are pretty good most the time and play together well. My favorite is hearing them laugh at each other and chase each other from room to room or chase each other on their tricycles that have been brought inside for the winter : )

We were blessed more than we would ever know when we were chosen to have twins! Not only do they have a built in playmate but it helps us to get Carson's life as 'normal' as possible. I can't imagine life with only a single child.

Other huge praises and steps I didn't know would come this month...Carson's blood work that checks for recurrences of the teratoma came back PERFECT! The chance of having a recurrence at this point is <2%. We don't even have to have those levels checked again unless there is some concern.
AND....drum roll...Carson is no longer 100% tube fed. We have cut back 40% of his tube feeding in the past month! This means that he is replacing those calories with food and milk that he eats/drinks throughout the day. So far, he has continue to do really well and is still gaining weight despite the reduction! Please continue to pray for Carson's eating...he does really well with most pureed foods but anything he has to chew is still a challenge! I have no doubt he will eventually conquer those foods too! Carson and Kellen are now the same height but Carson weighs over 2 pounds more than Kellen. : ) Kellen is not a picky eater, he just isn't a big eater and doesn't find that same enjoyment in food that I do! Please remind me when the boys are teenagers and are eating Preston and me out of house and home, that I once prayed DAILY for the boys to eat! I'm sure I'll need the reminder.

And last, I will be calling to schedule Carson next appointment/evaluation in Cincinnati in the next few weeks. We are looking at the beginning of April. Prayers are appreciated, in advance, for the evaluation and the team of doctors that will be working on Carson. Although this evaluation will require general anesthesia, I believe it is purely for another look at his airway and anatomy. Nothing will actually be removed or changed. As always, I pray for a miracle for Carson's airway, that it will open up with the least amount of reconstruction. And that we will get some good news from this team of doctors. These trips/evaluations are hard for me because since his initial evaluation, the results have not been the most optimistic. It seems like the timeline for decannulation only gets longer AND longer. However, as of now, they have not said anything that leads us to believe Carson would NOT get his trach out eventually. So, we will continue to wait expectantly!

We hope you all had a wonderful holiday season and Happy New Year! We can't wait to see all the blessings in 2014!