Liquid Gold

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Josiah has dealt with GI issues for far too many years.  It’s been an ongoing source of discomfort for him and frustration for us.  It’s extremely difficult to watch someone you love suffer while helpless to provide relief.  That’s how it’s been for longer than I can remember.

Initially we weren’t sure what was causing such pain and aggression.  Since Josiah is unable to tell us how he’s feeling, we’ve been left to try to figure it out by keeping careful data, looking for clues, ruling out possibilities, eliminating certain foods, adding in other foods, introducing new medicines, tweaking medicine doses, adding supplements, removing supplements, increasing liquids, increasing exercise and most definitely increasing prayer!

We’ve visited doctors and specialists.  We added protective clothing to keep Josiah safe from himself.  I’ll probably mention this many more times over the course of this blog but Josiah LIVED in a padded softball helmet with a full face shield for 3 years!!  All to keep him safe during extreme bouts of pain which caused severe aggression. Read more…

Hallelujah ~ Praise the Lord!

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JOSIAH NO LONGER WEARS A HELMET!!!!!

Today is day 7 without that bulky face-masked obstruction hiding his handsome face.  And, all it took was a trip to Florida.

If you know anything about Josiah you know it has been 3 years (how could it possibly be THREE years) that he has been wearing a padded helmet nearly every minute of every day.

He bathed in it, he slept in it, he ate in it.  He lived in that thing.  In fact, he needed several helmets so two could air out while one was on his head.

Over the past year or so there has been some success in removing the helmet for short periods of time. Depending upon who he was with and what he was doing, Josiah was even able to go 4-6 hours more recently without it.
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It Takes a Village

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So much for the self-imposed isolation.  Two weeks in we enthusiastically raised the white flag, announcing we were done!  There are only so many days one can thrive with limited sleep at night, then provide constant care during the day.  Rick and I just aren’t that young and energetic any more.  We had to weigh the risk of bringing caregivers back into our home versus the risk of sheer exhaustion.  It was a difficult decision.

It became less and less difficult as time wore on.

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Self-Imposed Insolation: Day 1

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This morning we began our self-imposed Shelter in Place.  We plan to leave the house only if absolutely necessary (just to clarify, car rides for Josiah are absolutely necessary…today we took 2 of them) and to limit contact to immediate family members currently living inside our home.  To keep Josiah as healthy as possible, it is the right choice for our family.

That means none of Josiah’s caregivers are working with him.

Rick and I are flying solo.  Or would that be duo?

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A Huge Heartfelt Thank You!

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On this 25th anniversary of Employee Appreciation Day, Josiah would like to thank each and every one of his incredible employees, past and present, for their tireless dedication and hard work.  He would also like to apologize for not expressing his appreciation last year or the year before or the year before that.  He was unaware this day existed.

Please know he appreciated you then too.

He appreciates you starting your happy day EARLY in the morning in order to get here on time to help him start his.  He appreciates you staying LATE in the evening to help him get to bed.  He is grateful you are here in the wee hours of the morning when he can’t sleep or won’t sleep because sleep is highly overrated anyway.  Who needs sleep?

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