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!


wilsonbmxAfter 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.

Nothing like bonding with your big brother!
Nothing like bonding with your big brother!
Of course, Max’s ability to charm and hob-nob extends beyond his little brother.  On our dinner break last night, he got acquainted with Mayor of Los Angeles, Antonio Villaraigosa.  Way to schmooze Max–we didn’t have the heart to tell him we can’t vote in LA (****please note–Rudy’s Beat is a non-partisan venue and the inclusion of any individual does not constitute an endorsement.  You need to do more than mingle with people lining up for 35 cent cookies to get the nod from Rudy.)

11 thoughts on “A New Kind of Normal

  1. What a fabulous picture of Rudy and Max!! Glad to hear all is going well. Keep up the good work Rudy! And no babyseats on the back of the big brothers’ bikes!!

    Continued prayers from CT (and yes, we’re jealous of your weather!)

  2. I’m finding that I don’t need to pick up a copy of People for its Style Watch pages anymore — I can just look to Rudy’s Beat and find out what the “somebodies” are doing in Westwood near UCLA Med. Ctr. — first Zac Efron, now Antonio V. I sure love those cookies too!

  3. Glad to hear your feeds are going well. We will pray for continued progress in this and all areas so you can move forward and head home.

    My family will still have to say that the Zach Efron visit is still top on the list for us. Teagan likes to look at that photo and it is getting harder to find it these days.

    God Bless you Rudy, hope we will get to meet you soon.
    Hugs and kisses.

  4. Wow, love the kids on the bikes, and Max & Rudy is just the most adorable picture! Looking forward to meeting Rudy soon.

  5. guess my daughter beat me to comments today, no matter how old they get; they always think they are quicker and smarter…ha Kept checking in all day to see how Rudy and everyone were doing…..sounds and looks good……..prayers for Rudy to some day be doing those crazy things……..we understand, what others call normal and what HLHS familes call normal are two different things……..Diana, a HLHS grandma

  6. Glad you had a Happy Birthday, Trish, and Max favors you for sure. Also happy that Rudy is tolerating his feedings. Our prayers will continue to follow you and yours. Sydney & Peter xo

  7. Rolf I loved your take on the new “normal” in your lives. May we all be so brave to embrace that as you guys have. Yes, I will be very interested to hear who Rudy ends up endorsing for Govenor…we’re all on pins and needles! 🙂

  8. Praise the Lord for a wonderful birthday for you, Trish. You are a beautiful woman inside and out! Rudy looks better every day. We can feel the heartbeat of each of you through your notes to all of us and we are grateful. We continue our prayers for all of you. The kids are real Troopers! Much love, Faye and Don

  9. Through your post, you make me see how frail life is and how much we take it for granted. Through Rudy’s beat, I am seeing things differently. I am so glad my friend mentioned your blog to me. Keep writing to let us see how Rudy is doing and I too pray for his recovery into a “normal” life as you state.

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