Deja vu

Hi everyone,

As has been the recent theme, it's been a while since my last post. Unfortunately that doesn't mean ours days have been uneventful. I sit here now with Ethan down again at Franciscan's in Brighton. He transferred over here today from Childrens now that he's improving after being admitted with bacterial pneumonia. The goal now is to get him back off the ventilator as quickly as possible so that he can come back home. There is something unnerving about everybody knowing your name and life story as you walk around the hospital. Ethan continues to a celebrity in the hospital, with his fan base expanding with each person he cracks a smile at. It's hard to see him sit on the vent especially now that we can see how much better he is feeling. They will sprint him back on the mist collar in 3-4 hour intervals tomorrow as he tolerates it. (I personally think he could come off all together). His most recent echocardiogram came back showing his pulmonary stenosis(narrowing) continues to worsen, but at this time there are no immediate plans to fix it.

We are still optimistic that he will get the trach out this year, but we get varying opinions from his different care providers. It is cool to listen to him now. He's growing and so is the air leak around his trach. If he's laughing or cryin hard you can hear his voice some. We talked to his pulmonologist today about a capped trach that could allow him to use his voice. This could still be a few weeks out, and kids vary greatly in how they respond to it. His mom and I just want to get him back home and keep him healthy. I was talking with Tina the other night and was saying that looking at Kevin and Ethan are really the only things that make me happy now. I know that sounds bad because you say "what about Tina?", but I told her that I just feel awful seeing her having to experience the same thing I am right now. At some point the flip of the coin has to turn to our favor.

Kevin misses having his brother home (sometimes). I think he likes the undivided attention he's getting again now. We got the boys an inflatable pool, and Tina had Kevin out there today. He loved it. Other big news for Kevin, he finally made the chart for weight! He's in the 5% on a normal growth chart. No wonder Shaq retired this week. Watch out big man!

Tina and I are hanging in there, but our Groundhog Day of a year seems to continue. I really look forward to the day this is a distant memory. Thanks to you all for the continued prayers and support. We haven't had much of a chance to "have a life" in Concord yet, so we appreciate those who've made an effort to stay in touch. Much love to you all!

Sincerely,

Ryan, Tina, Ethan, and Kevin