Friday, August 8, 2014

Celebrating the little things, because in this life they're BIG things!

Our lives for the last 2 1/2 weeks have been that of refined nomads. At one point in Boston we had to pack up and check out of our hotel daily due to sold out and overbooked hotels city-wide. We were scrambling to find accommodations so often that when we were finally grounded in the same room for 3 consecutive days, we felt as if we had found our eternal abode. In Cleveland we managed 3 nights in a row within 1 block of the Cleveland Clinic before we had to head to another hotel in the heart of the city. 

We put ourselves on the waiting list for the Cleveland Ronald McDonald House a few days ago. Although the waiting list was lengthy, we hoped that by the time they called we would still be in need of accommodations. We got the call yesterday that they had a room available for us! 

If you are not familiar with the Ronald McDonald House, it is a charity that provides a "home-away-from-home" for families while their children are receiving medical care for serious conditions. They allow families to access the best care possible, regardless of their distance from home, by providing free, comfortable, and supportive accommodations. 

The Cleveland Ronald McDonald House is located two blocks from the clinic and houses 52 families from around the globe. It goes beyond offering a comfortable night's rest by offering pool and fitness center access, free tickets to local events, in-house organized activities, and 1 or 2 meals a day free of charge through the generosity of local volunteers. In our short time getting settled last night, we met one of the volunteers who cooked us dinner. His son battled leukemia in his teens and he recalled how integral the house and its residents were in compassionately supporting their son's journey. We also met a retired pediatric orthopedic surgeon who volunteered regularly. His genuine interest in and friendliness toward others was a breath of fresh air. The accommodations they have provided us are beautiful and we feel so fortunate to have a "home" for as long as we are in need.

Although our original admission date for yet another 72-hour EEG was today, we received a call yesterday with the great news that they had space for Zacchaio a day early! As excited as we were to get the ball rolling, Zacchaio didn't seem thrilled to repeat the same 3-day process that he very patiently endured a couple of weeks ago in Boston. We at least got a comical picture out of it...

Some of you may have noticed the last bit of good news, as it's very (in)visible in the picture above. No, Zacchaio's NG tube was not inadvertently pulled out; we very intentionally said good bye!

Ever since Zacchaio was diagnosed with epilepsy 2 months ago, we stopped attempting to make gains with oral feeds. Not only was he an increased aspiration risk (due to laryngomalacia and the potential for him to seize while eating), but we also didn't want to introduce new variables while frustratingly navigating his epilepsy management. After 2 months of taking nothing orally, Zacchaio decided to surprise us with his tenacity by taking an entire bottle by mouth! And then he shouted for more! Within two days he was eating full volumes by mouth for every feed, and yesterday we decided to further support his newly acquired skills by removing the tube entirely. 

Talk about perspective... Feeding him by bottle takes 15 minutes compared to the one hour it would take on the pump. Feeding him by bottle requires only a bottle compared to a pump, bag, IV pole, syringe, and water flush. Our lives just got a whole lot easier! His life just became a whole lot more normal! We thank God that our baby boy has refused to become complacent; he continues to rise to each successive challenge. 

Team Zacchaio, thank you for your unwavering encouragement! We love broadcasting good news and pray that many more successes await...

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