June 21

I owe an update.  This is the first time I've been on my laptop since Friday.  I'll be brief.  Ryan has been on the steroids for 6 days.  He's had some good days and they were happy with his progress and started weaning his ventilation. They even talked about taking his breathing tube out to see how he'd do.  However, as is typical with this roller coaster ride, that's not happening.  He had a rough night last night and has now increased his ventilation settings and will not be extubated.  Our wee man has been putting up a great fight, and the medical world has obviously been a huge help in his fight.  Unfortunately, the steroid treatment is medicine's last option.  The rest is left up to fate, magic, miracles... I don't know.... The bottom line is we're worried.  That's all I'll say at this point.  There's no point in 'guessing' what will happen.  For a while we were living moment by moment, then it was day by day, then week by week.  At this point, I think we're in between living day by day. Trying to enjoy all the time we have with him, yet still keep life peaceful and fun for Sadie.  Sometimes we're good at it, sometimes we're not.