Cabin fever on a rainy weekend

They say it never rains in southern California, so it was a perfect weekend for Livy to go out and play with her hula hoop!

And what better day for Max to build a bike track on the cul de sac and ride to his heart’s content!

Livy came prepared just in case the weather changed

We’re working on proper umbrella handling technique with her as it seemed to be in this position more often than over her head.

Astute viewers will notice that Wilson is missing from these photographs; proof once again that he’s smarter than all of us and knows that the best place to be on a rainy weekend is inside with a book.  And everyone can rest easy that Rudy was with him–warm and cozy inside the house having a lazy day.

Even though we’ve been home a lot longer than we imagined, the 28 weekends in the hospital are still fresh enough in memory that the simple fun found in a weekend at home isn’t lost on us.  Stay warm and dry!

An internet sighting of a Rudy fan

Rudy’s fans are everywhere.  You never know where they are going to pop up.  A friend of ours (hi, Rebecca) noticed a familiar bracelet appear in a video she was watching on the Antioch University website.  Check it out…and while you’re at it you might just find out something about the BA programs at Antioch University.  Way to represent, Dick!  Rudy thanks you!

Click here for the Antioch website and then click on “Tell Me More About the BA Program”.  Or, you can go straight here to see it on Vimeo.

Remember, you too can be a star on Rudy’s Beat.  Wear your Rudy bracelet proudly!

Rudy’s Christmas Wishlist…

 

Lots of smiles!!! We'll all be home for Christmas!

Yesterday’s appointment with Dr. Harake was full of smiles as Rudy’s echo, once again, looked solid and his O2 sats registered at 85%!  (Rudy always has high sats in the cardiologist’s office…they must pump extra O2 through the office air vent system or something)  Yesterday’s appointment also marked our last scheduled doctor appointment before Christmas which means Rudy’s singing “I’ll be home for Christmas…” and I’m looking forward to a respite from medical offices for a couple of weeks.  I did, however, look ahead to my January calendar and realized the week of the 5th has an appointment each day of that week including a trip to UCLA to see the pulmonologist!  Oh well, that’s next year…we’ll hit 2010 running!  Ha 🙂  You know what they say…”New year, new out-of-pocket maximum!”

After talking with the team at UCLA, Dr. Harake feels our next step is to schedule a heart cath for Rudy in mid-January which will give everyone involved detailed information on which to base their decisions regarding the Glenn.  Rolf and I feel great about this plan and although the heart catheterization is an invasive procedure, we value deeply the information gained from it and appreciate the team taking measures to be as informed as possible before opening our little man up again. 

We’re still having to suction Rudy pretty regularly…I’m wondering now if it’s not due to some bug as no other symptoms have surfaced but rather maybe because of changes in our weather (thicker marine layer, cooler temps at night) and also maybe because he is simply more active these days…awake for longer stretches of time and quite the vigorous kicker!  Rudy received his 2nd H1N1 vaccination dose this week so I believe he is well protected from the flu now…the only vaccination he hasn’t been able to get yet is the one for RSV.   His docs here in town hoped to start the 5 dose vaccination back in October but because of a hiccup in the authorization process, he still hasn’t gotten it!  This was of concern to Dr. Harake and Dr. Abbott at this week’s appointments so superstar nurse Melody got on all the parties involved and it will hopefully be available the middle of next week.  (Oops, I guess we do have a quick dr. visit next week afterall).  It will be a relief to have that vaccination started as Dr. Harake has seen RSV undo in other patients the kind of progress Rudy has made…a foe Rudy just doesn’t have the reserve to fight at this point.  So, we continue to pray diligently for a covering of protection for Rudy…may he be our spiritual “boy in the plastic bubble” until we get past the winter season.

Speaking of superstars,  Nurse Elaine from Dr. Pornchai’s (UCLA pulmonologist) office has worked MANY hours on Rudy’s behalf trying to get a prescription for trach supplies filled by our friends at APRIA.  Rolf and I have purposed to not use Rudysbeat as a laundry list of complaints and rants and thankfully, there has been very little about which to complain in our journey but the lack of follow through and chronic mistakes made by APRIA has gotten to the point where we’re asking oursleves “Are we on candid camera?”.  If I were famous, I honestly would expect Ashton to pop out of the next APRIA delivery truck screaming “you’ve been punk’d man!!  The prescription was actually originally written back in April by Rudy’s ENT doc, followed up by another prescription in July from his pediatrician and then in October by Dr. Pornchai!!!  And, seriously, we’re not talking about random, obscure items here.  Well, EUREKA!!  This week we received a delivery from APRIA that included the HME trach filter we’ve been waiting for since April.  I emailed nurse Elaine right away to tell her the good news and ask for specifics on how and when to use the filter, etc.  “How long does the filter last?”, I wrote.  “Filter?”, she responded, “Isn’t it ‘filterS’.  You should use one filter a day…they should have sent you 30 – a month’s supply!”.  OH MAN…another call to our helpful friends at (cr)APRIA!!!

As a result, Rudy has a unique Christmas list for Santa this year…with Apria’s current success rate at actually getting something right where Rudy is concerned, I have more faith in there really being a Santa Claus who keeps a well-stocked supply of medical equipment and supplies next to the warehouses of toys.

RUDY’s CHRISTMAS WISHLIST

1.  A big, red ball     8fr red robinson catheters

2.  A cuddly teddy bear    sheets of pink poly-mem Quadrafoam

3.  bb gun     10cc saline bullets

Ho, Ho, Ho!

 

 

 

 

Finally!!! It’s Official…

…the Christmas season is upon us!  

The outdoor lights are hung…

A little shopping has been done…

And holiday haircuts are checked off the “to do” list…

It’s time to celebrate!!  The presence of Jesus in the life of our family has not been more apparent or meaningful to us than in the past year and a half and we are particularly grateful to be starting this advent season home together under one roof among the sights, sounds and smells of the season that are familiar and comfortable.  It’s fun for all of us to watch Rudy experience Christmas at home for the first time…he has an army of nutcrackers watching over him on the shelf above his day crib that he can’t keep his eyes off of…and the bright lights of the Christmas tree are equally mesmerizing.  All the festivities surrounding Christmas may be new to Rudy but I think he already gets the reason behind the season.  In part, because I think his guardian angels must have filled him in.  I might have shared this story before but about this time last year, Rolf and I transitioned to taking turns at Rudy’s bedside.  I would be at UCLA Mon.-Fri. and Rolf would be with Rudy on Saturdays and Sundays.  I remember being heartbroken on Fridays when I had to leave Rudy by himself until Daddy arrived early Saturday morning.  To make it a little easier on myself, I envisioned Rudy’s room filled with an army of angels when I left on Friday and when I returned on Monday, I’d ask him about the stories the angels told him…”Did they tell you about Noah and his crazy high sea adventures?…Or about Joseph and his coat of many beautiful colors?…Surely they told you about how Jesus came to earth as a little baby just like you?…Or how he grew and performed many miracles just as He’s doing in you right now!”.  I’m sure Rudy’s angels kept him entertained with all kinds of wonderful stories all leading to the same message…”Jesus loves you Rudy”.  

The other reason I believe Rudy “gets it” this season is because I think a baby like Rudy doesn’t go through a journey like this without a visit or two from the big guy himself!  How many times did Jesus come to bring comfort or, on some days, physical life itself through the care-givers and special visitors that were put in Rudy’s path…countless times, I imagine, which is why I believe Rudy is very familiar with Jesus…intimately aware of the miracle of His presence.  Rudy may not be old enough to articulate it but he is LIVING it and that is my prayer for this Christmas season…that all the joys of the season be deeply rooted in the knowlege that Christ’s presence brings hope, miracles, life, comfort and peace to a weary heart and that by embracing that reality, the weary heart is transformed!  That said, Blessed Advent dear ones!  Jesus loves you too!  🙂

Joy, Joy, Joy…

P.S.  Rudy turned 14 months old yesterday which means he has been home for 7 months–the same amount of time he was in the hospital!!!  Considering some wondered whether or not we could have him home for six weeks, this is remarkable.  JOY, JOY, JOY