A Josiah Update - January 2nd

Sigh. Updates are so easier when I remember to write them every two weeks ... :)

Well, where to begin with it all, eh? We were grateful beyond words to have Josiah home for his 'first Christmas'! I suppose that in itself would be enough of an update for us as parents because it is a demonstration of how far things have come in the past year! A year ago Josiah was on the mend from a near-fatal aspiration/chest infection and we didn't know what the future held ...

Christmas was full of visits, friends, family, gift-giving, and snow! Marie and I felt quite spoiled with all the love we experienced throughout the seasons - thanks all. Josiah got to meet a horse close up and even lay in the snow for a bit, which he thouroughly enjoyed until he put some snow on his face! Marie and Josiah (and subsequently I to a point) were sick here and there. Marie had bronchitis for 3+ weeks (still getting her energy back) and Josiah was fighting off something, and currently he has an eye infection (both eyes) which has really improved after only 48 hours.

Continuing with health, Josiah has seemed to lost his appetite and we're trying to figure out what the means. He rarely refuses a bottle, but for the last 3 weeks he hasn't been interested and we've been needing to G-Tube him for every feed (we'd typically just use the G-Tube for just his nighttime feeds). We're trying to determine if it is related to a food allergy, a change in his diet (we were adding a higher-calorie formula to his food), or if it's because he's feeling discomfort from his 'mucus balls.'.

Mmmm ... mucus balls. Josiah has been generating more phlegm in the last month and Marie & I were always under the impression that this was normal for trache patients. Josiah has been puking up these mucus balls at least once a day (up to five times a day, like yesterday) because it is obviously discomforting and affects his ability to digest food properly. But after a few calls around checking in with the dietician and respiratory therapist, we're pretty certain now that it's a virus that generating all these goobers that he's swallowing. No fun at all. Definitely provides a challenge, anticipating them and protecting Josiah from aspirating (not too mention, trying to keep up with the laundry and carpet cleaning!) and it makes him completely exhausted afterwards.

Most of the time his lack of appetite and puking doesn't interfere with his day and he's still pretty happy, for which we're glad. He's loves taking 'steps' and his legs/feet were casted during the first week of December and we're expecting his braces and walker in January - woohoo! Josiah is also really improving in his posture and torso control. He can remain sitting on a couch by himself, and he's now able to pull himself forward - a huge big development of the last 3 weeks! One of the funniest 'development' things he has done recently: Josiah one day purposefully 'fell' out of his seat onto the floor, landing in a perfect crawl position! Marie freaked out, but Josiah liked it so much that he did it 3 more times that day!

Lastly, this month we'll be orientated two new nurses! We're grateful that Bayshore is continuing to try to get us the night coverage that we're asking for. Right now it looks like we'll have Monday-Saturday nights covered - woohoo!!

That covers the highlights of the past month. Thanks for all the prayers and support along the way. I'll sign off with a few prayer requests if you're interested:
~ mucus balls: that he'll get over his virus and that he won't aspirate when he pukes
~ appetite: that we'll figure out why he doesn't feel like eating
~ walker: that he'll adjust well to his walker and that it'll open up a long list of possibilities for him!
~ energy, strength, wisdom, and health: for all three of us!

Grace & Peace.
- Andrew, Marie & Josiah