the amazing adventures of carson and kellen: Thinking positive!

Monday, June 2, 2014

Thinking positive!

We are headed back to Cincinnati in the morning (Tuesday morning). Carson has a clinic appointment with pulmonology and GI Tuesday afternoon and then surgery is scheduled for 11:15 ET on Wednesday, June 4th. This surgery is a 'triple scope' (rigid and flexible bronchoscopy to look at his airway and a upper endoscopy to look at his esophagus and stomach). This is all done in an attempt to get a 'big picture' of Carson's airway and hopefully a plan for his future. I would be REALLY optimistic about their findings because Carson does so well at home but every other time, we have expected good news and we get...'his airway is really complex', 'he is going to have his trach for a very long time', '5 years', '10 years', 'his upper airway is inflamed', etc. So with that said, I am trying to remain cautiously optimistic, because I KNOW one day we will get the news we hope for. I can feel the anxiety creeping in but with that said, regardless of what the doctors say, I am so thankful that Carson is developing so well and meeting all the appropriate milestones. I will try to focus on that! I'm praying that the doctors DO get the best possible picture of Carson's airway and I hope that we (jointly) come up with a solid plan!

As Carson gets older, these trips get harder because he understands more of what is going on and I just hate that he has to go through the discomfort and any anxiety himself (I wish I could take it all away!) Please be praying for his safety through surgery and for guidance of the surgeons hands, as well as clear minds of all the other medical personnel that will be involved in the surgery and his care. I really hope we will have good news to report on Wednesday evening!

But on a happier note, I can say (but with my fingers still crossed) that Kellen is potty trained!!!! I think it is safe to say that it was easy with Kellen. Just praying it continues and we will wait to see when Carson starts to show some interest. For Carson, we got some exciting news last week. I spoke with his dietician and we can try to cut out another tube feeding. I'm going to wait until after surgery to start but when we do, he will be getting about two thirds of his nutrition by mouth and only 1/3 by tube. Woohoo! And...Carson blew me away yesterday. I was packing things up and the boys were playing by themselves. I hear, what I think is, Carson counting to himself. Huh?!?...I stopped to listen and sure enough, he counted from 1-10!! Who knew??

We have been packing and moving our stuff (some into storage and some over to Mimi and Papa's) these past few weeks. We will be out of our current home as of Thursday/Friday and living with Dave and Sandy until our new home is completed (likely 2-3 months). But we have still had alot of time for fun...I'll just let the pictures tell some of the stories.