Making Moves...

Hi Everyone,

It's been a while now since I got back on to talk to you all. Sometimes it's hard to find the words to say, and sometimes it's difficult to stay positive during this whole ordeal. We all try very hard to remain upbeat and positive about Ethan's situation, after all, if he can start each morning with a big smile it's the least we can do. The boys just hit 8 months on the 27th. Never in our wildest imagine would we have thought he would be in the NICU this long. I remember when the boys were first born and the surgeons in Columbus were describing Tetrology of Fallot and VACTERL syndrome were for the first time. We naively thought that at most he'd be in the hospital 3 months. Now that seems like a life time ago.

In many ways, we've come so far from where Ethan's journey began. He's had countless surgeries, and many setbacks along the way. Now it appears as though he's come to a break in his surgical routine. Nationwide Children's and Children's Boston have done what has been surgically needed to help him heal. Now he's taking his next big step towards coming home.

The plan is tomorrow morning they will transfer Ethan to Franciscan Children's Hospital in Brighton, MA. (It's a suburb of Boston, 5 minutes from Children's). This hospital specializes in the rehabilitation of children, and specifically with kids with pulmonary issues. Ethan's goal is to get home "quickly" and without any ventilator support. He'll have a team working with him including Speech Therapist, Pulmonologist, Occupational Therapist, Physical Therapist, and general nursing.

Our objectives are: (1.) Get him off of any ventilator support at night (2.) overcome his oral aversion and get him taking oral feeds (3.) build his leg strength and develop better muscle control. The hospital will work with us on these goals, and we will set the timeline when we want him to be home. The major goal is the vent support, as having him come home on the ventilator will severely limit his ability to travel. We are also hopeful that him leaving the NICU will help him better gain weight and thrive. Nutritionists will work on setting his caloric needs.

Kevin hasn't been able to visit his brother for 2 weeks now, since Ethan got a bacterial infection. We cannot wait to get the two of them back together and watch their interaction. It's been difficult to visit Ethan with not being able to take Kevin into the room. Kristen, as always, is a HUGE help for us. Don't tell her I said this, but she's a very great aunt and amazing help to us.

The warmer weather is definitely a welcome addition to New England. We've been able to take Kevin outside for some walks, and it's so nice to be able to get some exercise. Having said that, we are still supposed to get 12" of snow this Friday. I guess winter's not done yet. We've joined the YMCA in Concord (thanks mom), so we can get the boys set up with swim lessons and hopefully it will be a good stress reliever for Tina and I.

Tina and I had a date night last Saturday as we got tickets for the Miami vs. UNH game in Manchester. We were so excited for the game, and were talking a lot of shit to UNH people, only to be let down by a lackluster Miami performance. However, Miami at least made it to the playoffs unlike Boston University (Kristen). Mom was in town and stayed with Kevin. We did get to go out for a fun dinner afterwards at the Strange Brew Tavern, so it wasn't a total loss.

I wanted to say a quick thanks to everyone, friends and family, who've come to visit us. We love having the company and it means a lot that you've made the effort. We appreciate all the thoughts and prayers, and the fact you're taking the time to read the blog. It's been therapeutic for me, and a great way to keep all our friends and family up to date on the spinning top which is our life.

Much love,

Ryan, Tina, Ethan, and Kevin