Wednesday Morning - A Josiah Update

Greetings

Josiah has had a couple good days/night back-to-back. It really helps now that his seizure med is given at night rather than in the morning. He's doing his best to keep his eyes open and interact but he's really puffy these days and so the doctors are wondering if he's retaining water (his weight gain has been unusually large).

Josiah still isn't himself though. He still needs a little oxygen (he had been fine on just room air for months, even when he had the cold) and he runs into moments when he has a minor spell and doesn't have to energy to fight along with it. Tomorrow morning (around 11 AM I think) Josiah is booked for an MRI (brain scan) because of the seizure activity. You can pray for him, his safety (when he went a CT scan last time you'd remember that the technicians handled him poorly and he sustained substantial trachial trauma due to improper suctioning). Marie is a little upset that she can't accompany Josiah to his scan (rules and all) but our doctor has assured us that he'll leave detailed instructions with the technicians so that Josiah doesn't get hurt again. You can also pray that the MRI results will be favourable - we accept all miracles!

Finally, I did my first trach change on Monday morning. A little unnerving, but Josiah was really dopey and so made it easy for me to succeed! The stoma (opening) looks incredibly healthy, but WOW you should have seen the goop in his trach that we weren't able to suction out. Browny-yellow sludge - that's only way I can describe it. It's his dirtiest trach yet.

My grandparents (Henry & Clara M.) are visiting today and I'm going to scoot out there shortly to be with them. Please pray for the perseverance of Marie and I as it always makes our already difficult lifestyle even more stressful when Josiah's sick and throwing us new things.

In God's Hands.
- Andrew, Marie & Josiah