Lucas Camilo

Preparations are being made for our departure from Washington DC in less than a month.  Krista is actually in Seattle this week working to get things going on that end – from home nursing for Lucas, to a setting up a few pieces of furniture and an internet connection in our new home, to figuring all of what needs to happen so that Lucas will get the medical coverage he needs when we arrive.

Moving across the country with a 2 year-old is always a challenging ordeal, but when that two 2 year-old has a severe neuromuscular disease and uses a ventilator it rather ups the ante.  For example, we heard earlier this week that the equipment company that we use in DC is refusing to let us take the ventilator on the cross-country trip.  As many of you know, Lucas can spend a few hours a day breathing on his own, but there’s no way we can travel in a plane without him having the extra air pressure support that the vent provides.  We’re confident that we’ll come up with a solution to this quandary, and we’re certainly glad that we gave ourselves time to make the move given that situations like this can arise.

The actual day of flying is going to be pretty nerve-wracking.  We’ve made lots of special arrangements already with the airline company to ensure that we have special doctors’ notes, can bring equipment and extra baggage on the flight (all of which needs to be pre-approved), can take Lucas’s Kid Kart (wheelchair) right up to the door of the plane, as well as have an extra person accompany us to the gate, etc.  But it’s still hard to imagine that actual day…

Getting set up for all the doctors, specialists, therapists, and nurses Lucas will need in Seattle, along with approval from the insurance company is another big challenge.  Krista is working away on that front this week, especially targeting the biggest challenge which is getting home nursing covered.  Since our primary insurance likely won’t cover it (at least on their own accord) we have to work through various state agencies, including the Medically Intensive Children’s Program.  We’ll spare you the gruesome details but we’re definitely getting to know the all-too complex support system for people with disabilities.

The great thing is that we’re lucky to have so much support from friends and family.  Various people in Seattle – especially Burke’s family – have jumped in to help Krista this week, and it seems like any time we send an email or make a call with questions for someone they get back to us with helpful advice.  There are two other families in the Seattle area with boys that have MTM (the same disease as Lucas) and they’ve been very helpful, along with various other parents of special needs kids that we’ve connected with over the past few years.

And Lucas?  He seems blissfully unaware that something big is about to happen.  He continues to enjoy his favorite books and games, wowing us with new feats everyday.  Just last week, for example, he learned to spell PENGUIN – with a little cajoling he’ll blurt out and sign all 7 letters.  His aptitude for memorization is truly remarkable sometimes, and he seems to genuinely enjoy the challenge of spelling words.  For now, at least, it just another memory game like his favorite game of guessing the animal cards.

We’ll keep you posted as we get closer to the big date.  Here’s a little video of Lucas reading one of his favorite books: