Merry Festive Greetings to All!
Josiah has had a fairly good week. The only downer we've experienced is that Josiah had 4 seizures yesterday and 1 today. The new seizure med hasn't come up to it's final level yet, so we're waiting to see what will happen. We're really praying that some way some how Josiah's seizures will be managed and eliminated.
Josiah has been managing his airway VERY well, crying hard and at the most needing a short burst of oxygen. In the coming weeks Josiah will be getting a larger trach (4.0 mm wide as opposed to his 3.5 mm currently) which is great news and will bring a whole slew of hopeful possibilities, but Josiah will lose his 'voice' which is one of the few ways we have to interact with him (the wider trach means less or no air will escape up past his vocal chords).
Christmas this year comes with many mixed emotions. Trying to find balance and maintain perspective are difficult daily goals. There are many things things to be grateful for (especially as we reflect on the ways the Christmas season can be difficult for those in other situations) but it doesn't remedy the hole in our hearts. Josiah is missing from our home, that's the bottom line.
Continue to pray that Josiah will be happy and healthy. While he is managing his airway fine for the moment, he continues to have his ups and downs with seizures and fevers.
Comfort and Joy.
- Andrew, Marie & Josiah
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