Late Thursday Night - A Josiah Update

Hi All

There isn't really much in the way of news in Josiah's life. Monday/Tuesday he had a string of seizures (7-8) which is most likely due to the fact his weight fluctuates so much from day to day (water retention), diluting the seizure med. In response, the doctor is trying Josiah on a more consistent yet smaller dose of diuretic - hopefully this will keep the roller coaster effect out of Josiah's life (it must feel awful to be so bloated and wet in the lungs every 2-3 days) and avoid slipping into frequent seizures. The doctor is also going to slowly wean the diuretics from week to week to see how Josiah's body will respond. We're praying that somewhere along the way this puzzle will be solved.

Josiah is demonstrating that he is managing his airway a lot better of late, able to get into INTENSE crying moments (with deep d-sats!) and then recover on his own most of the time. Very encouraging! There was always this projected window of time when we were warned that Josiah's dying spells were going to be the worst and we might be coming near the end (but who knows how long this will take before he is stable). He is still on a small amount of oxygen and pressure support (CPAP), but is demonstrating progress and development.

By the way, Josiah is about 18 pounds now - WOW! Oh, and after nine months Josiah has finally pooped on me - Big Time. He left a puddle in the high chair, it tricked down my pants (from waist to knee) and somehow ended up on both sides of the bed - and there was still a lot in the diaper! Ah, children: the gift of God ... I wear my stains with pride.

Over the last couple of weeks we've had a few "NICU survivors" come visit us. Not every story is a happy one from beginning to end and a lot of these families will be facing challenges for the rest of their lives, but we 'bonded in the trenches' and so it's very special to re-connect with them, share comfort, and celebrate the joys and relief of 'graduating' from the hospital and back into society :) It's strange being in a world where disability and abnormality is the norm; that is, the hospital. After a while we begin to think that every child must face a risky procedure in their life and that slow or 'un' development is the story for every child, and it's boggling to realize day-in-and-out we're seeing the sickest children in the province. Lots of smiles and victories - and my God we need those happy endings! - but way too many sad stories. Every week there is a new one. I have never been so intimating aware or rocked by so much death and sorrow.

As silly as it may sound, but in the last nine months Marie and I have a quite a few discussions on how to pronounce Josiah name! We never thought it would come to this, but in a situation where hundreds of people are interacting with Josiah we hear all sorts of ways to say his name. And so after many candid yet meaningful conversations we've landed on where we want to be. It's probably not the 'Jewish' way to pronounce Josiah (after all, he shares his name with a Hebrew king) but it's what resonates with our hearts.

So if you care, phonetically our Josiah is called ...
joe-SIGH-ah (slightly greater stress on the second syllable ...)

It's not "juh-SIGH-ah" (which I - I admit - have a tendency to say when I'm feeling a little lazy) or "juh-ZIGH-ah" (which is probably the 'more Hebrew' way of saying it).

If anyone cares, there you be :)

And finally, Marie and I would like to acknowledge that we have blitzed. The kindness of others over the past few weeks (especially the tremendous giving of our church family) has knocked the wind out of us. We are overwhelmed by the generosity we've received and it has left us speechless. In all honesty, we don't know how to say thank you any more (if that makes any sense at all). Nor do we know how to emotionally respond: we are grateful yet confused, stunned and elated, bursting and deflated, humbled, silenced, disturbed and (vulnerable here) even a little angry sometimes. We have never deserved anyone's kindness, but we know your kindness is the kindness of God. Thank you. I know we have failed in acknowledging all the givers who have blessed us so and we apologize profusely. May God richly reward you in this life and in heaven; there is no other way to repay you or return your charity. Thank you.

Grace & Peace.
- Andrew, Marie & Josiah