Back and Forth

Hey everyone,

I'm sitting at the Cleveland airport, in the midst of my weekly ritual flights back and forth to Columbus. This seems to be where I spend a lot of my time these days. I had a great weekend being home to see my family. It's amazing to see how much the boys grow from week to week. Jimmy and his sister Kristin picked me up at CMH on Friday, and we went straight to check on Ethan. It's incredible how much better he looks now with the "trach" incerted. He's got such a handsome little face, and now we can actually see it. As he gets bigger, he and Kevin look a lot more alike then we first thought.

Ethan's weekend had some ups and downs (no surprises there). The did his esophogram on Friday. The good news is the contrast did go all the way down his esophagus and into his stomach. This is a notable improvement over his condition before. The bad news is that just below the surgical site, the esophagus is VERY narrow. They are hoping this will stretch over time, and the nurse practitioner told us that if needed they can do several procedures later to open it up more. Also, some of that contrast did still leak out of the surgical site, meaning it's not completely healed up just yet. Hopefully, they will do another esophogram later this week and it will be all healed up.

The biggest bummer of this weekend was how narrow the esophagus got below the surgical point. This means that most likely he will not be able to feed orally for at least 6-12 months. That means we will remain dependent on his G-tube in his stomach to continue to feed him during that time. It's just another thing we will need to take care of for the first several months to years.

It's not all bad news though. As I said before, he's looking much better with the trach. Also, they started him on CPAP intervals this morning. He was on CPAP for an hour and did very well they tell us. They will continue to increase this time over the next several days and weeks, until he's ready to completely be off the ventilator. He's also back on milk feedings, and his tolerating them very well. It's to the point today where he's off the TPN nutrition all together. Ethan is 6 lb. 5 oz. now, and hanging as tough as ever. I got to hold him for the first time in weeks yesterday. It was a little frightening with the trach in, but I loved being able to hold him.

Kevin continues to be our little calm eye, in the middle of the hurricane that is our life right now. He's doing great, and continuing to grow and develop wonderfully. It's so great being able to hold him whenever I want, and hug and kiss him. I think he's gotten a bit too used to the excess attention he's received so far. He seems to get more upset at the hospital when we are paying more attention to Ethan. Let the sibling rivalry begin! I was able to give Tina a chance to sleep a bit more this weekend, and feed and change Kevin at night. I really can't complain, the kid only gets up a couple of times a night.

We've been trying to get more and more information on getting Ethan transfered out to Children's Boston, so that Tina and Kevin can join me at our new home in Pembroke. Hopefully, this week we will get a better idea of when that will be. The hardest part in all of this, as in most things in life, is the unknown. Once, we have a goal, we can put together a plan to accomplish it. My wife is incredible as ever. She's been playing the role of single mother for several weeks now and is so strong. She's definitely an inspiration for me.

It's cooling down in New Hampshire, with the lows getting down to about 40 degrees. Our stuff is all moved in, but I'm still in the process of unloading and organizing. Work is going well, and I'm getting close to start heading out on the road during the weeks. It will be a challenge, but definitely one I'm looking forward too. Hopefully, we can all be out there before Thanksgiving, but I've learned to just take things as they come.

Sorry if we've been hard to get a hold of, or have been bad about getting back to you. We appreciate all the calls, emails, and prayers. We are truly blessed to have such amazing family and friends. You guys are awesome!

Have a great week!

Much love,

Ryan, Tina, Ethan, and Kevin