A New Kind of Normal

I’ve been thinking about “normal” lately.  It’s easy to think that this journey with Rudy is a temporary episode and that someday he’ll come home and life will get “back to normal”.  We’ve been encouraged by Rudy and his progress and can start to picture him heading home (even if it’s still many weeks away), but are coming to accept that “normal” for our family is going to look different from this point forward.  Trish’s birthday and the rest of our weekend was an experience of this.  Life can’t be ruined because of our child in the hospital–instead our family needs to adjust to how we live life and celebrate milestones with a child in these circumstances.  There are adjustments to be made.  We can’t fight them or ignore them, so it’s before us to accept and embrace them.

So along with celebrating Trish’s birthday, we tried to make room for other “normal” activity.  Saturday morning, Wilson, Max and I went out on Ellwood Mesa for a bike ride.  Good for the soul to not only move around, but to do it on such a perfect day.  As I see some of the weather reports in other parts of the country,  I hate to rub it in, but if riding around your neighborhood on a February morning brings you to views like this you can’t help but get a bit giddy.

Of course, Wilson and Max are not content to let you think that we simply had an idyllic pedal along the coast.  They would have you know that the angle I snapped these pictures from doesn’t clearly depict the huge air they got off these jumps.  Rudy should be advised–as much as we’re eager to get him out of the hospital, his big brothers are constantly flirting with ways to get admitted to one!

After a good morning’s play, Max and I headed down to UCLA to see Rudy.  All has been quiet and relatively uneventful in Room 5453 and we like it that way.  The team started feeds to Rudy’s tummy on Saturday and he’s tolerated it well.  After an initial run of Pedialyte, they switched over to Mommy’s milk and are stepping things up slowly, he’s currently at 8ml/hr and if that continues to go well they’ll bump him to 10 by the end of the day.  So far his stomach hasn’t swollen and from the looks of his diaper those systems seem to be in working order.  Please pray for this over the next couple of days–it’s very encouraging progress, but we’ve gotten about this far before only to have the course reverse itself.  Hopefully, getting some significant nutrition going will allow us to make progress on other fronts.

Speaking of those other fronts, he’s been breathing very comfortably on his trach collar sprints.  He did sprints of one hour on Friday, two hours yesterday, and today he’s going for four.  He’s already been making it very clear that he doesn’t like it when they put him back on the vent in between sprints, but we’re for taking things slowly.  Last time we let him have his way, he got tuckered out after a few days.

Max has been good company here with Rudy, although his effect on the room can sometimes be what you imagine would happen if Shemp mated with a tornado.  He’s enjoyed being in the room with his brother, breaks in the playroom and excursions to the vending machine.