Video Stars

Our spring break isn’t at all what I hoped it would be and, to top it off, Rudy came down with a nasty stomach virus resulting in an epic case of ED today (remember the explosive diarrhea?) so we’re  staying close to home and making plans to tag team the many church and rescue mission Easter services and activities going on the next four days.  Please pray this bug passes quickly…Rudy is losing fluid as quickly as we’re putting it in and dehydration is always a big concern with him.  The big kids are making the most of it, however, and happily entertaining themselves with Netflix and various creative activities.

Thanks to Olivia, Rudy can add “Music Video Super Star” to his resume with yesterday’s iPad project!  🙂  It makes me smile…

‘Wishing you a smile today too!

One Tough Kid!

There’s no denying that Rudy is a tough kid but he had to prove it again today with another “first”…he managed to knock out his own two front teeth!  I’m not even quite sure how he did it but I was with him and Olivia in my room this morning when I saw him lunge forward while sitting on my bed.  Olivia walked over to help him sit upright again when she saw blood streaming down his chin and called me over.  Good grief!  One tooth was out completely, the others around it were loose and he ended up losing a second tooth a little later!!!  He was chewing on a plastic bottle at the time so he must have fallen on it just right when he lunged forward…he bounced back quickly but his impressive injury bled for several hours after the incident so he looked pretty messed up a good bit of today.  He’s fine, thankfully, and they were just baby teeth anyway but it’s a first that’s definitely worth documenting with pictures…

Tooth #1
Tooth #1…Tooth #2 was swallowed, we think!
All cleaned up and very proud!
All cleaned up and very proud!


"Show us your teeth Rudy!"
“Show us your teeth Rudy!”

Max was quick to point out the upside…double pay out from the tooth fairy!  Oh yeah, I almost forgot about the tooth fairy!!

Grace Under Pressure

Rolf and I had a conversation recently about the value of disappointment in the lives of our kids.  As a follow up, Rolf forwarded the following article to me…“How Middle School Failures Lead To Medical School Success” and I think it’s worth sharing.  I appreciate the article because I not only have a vested interest in the emotional health of  medical professionals but because it also affirms my views on the subject as it applies to life in general.  As much as I want to protect my kids from disappointment or heartache, the reality is that if I can help them navigate these experiences rather than shield them from it, they will learn the important life lessons (as quoted from the article) of “resilience and self-worth that lead to grace under pressure” and ” the ability to face adversity with intelligence and equilibrium”.   Bottom line:  I sooooo want this for my kids!!!

This is a timely subject to ponder as I’ve revisited prayers for balance and emotional stability for the big sibs lately.  Rolf and I have tried hard to be “present” for the big sibs and create as normal a lifestyle as possible since Rudy came onto the scene but the reality is that they have had to sacrifice certain things and make things happen for themselves when Rolf and I haven’t been available.  Our life is different and I pray the resulting effect is a positive one for all of us.  I want  my kids to know that life is beautiful and rich and something to be valued but it will also bring with it challenge and I pray the lessons we’re learning from Rudy will empower the big sibs to face the challenges in their lives with intelligence, balance, compassion and grace.

It feels to me that there has been a shift in focus recently…when Rudy was a baby, his care was consuming but it was hands-on and something we did at home…together.  In recent months, what has been the most consuming is the management of Rudy’s care between the various agencies with which we partner and I feel like it has eaten up more of my time and emotional energy…time away from and energy not given to the older sibs.  I’m not quite sure how to achieve a sense of balance again…food for thought at this stage in the game, I guess,  but I think a much needed break from school and therapy during spring break next week will help me regroup a bit.

Hey, speaking of “food”…Rudy sure is making progress with eating food by mouth.  With the extra practice at school and with Nurse Dodi, Rudy is happy to try new tastes and textures but also knows what he does and does not like.  Mint ice cream remains top on his list as he demonstrated to Olivia last week:

It’s exciting to see him show more and more interest in food!  Dr. Kelts called yesterday with the results of Rudy’s ultrasound…as expected, his liver is enlarged (likely due to back pressure related to his heart) but there isn’t anything we can do about it…the test results mainly serve as baseline information for us at this point.  It also revealed that Rudy has gall bladder stones.   Again, it’s not something we need to address but what the heck?!  So, with the ultrasound behind us we have a break from Dr. appts for a couple of weeks which coincides nicely with spring break which coincides nicely with our warmer temps…spring fever is definitely running rampant in our household!  🙂  Happy Spring everyone!

A Special Delivery

Grandma Jo, Rudy and I drove to Palmdale today to watch Olivia play in a soccer tournament and when we returned this evening, I discovered a large package on the front porch with a note addressed to Rudy.  I opened it to find this amazing painting…



The note was from one of Olivia’s Girl Scout sisters and her dad (who paints!) and the note read in part:  “Dear Rudy, We are glad you had a fun time at Disney World.  We saw your picture in the newspaper.  I especially liked the one where you were signaling a touchdown…the happiest I have ever seen anyone.  Your picture reminded me of a boy on a swing so I used my imagination to paint a picture of you on a swing with Disney pals…”.  Oh my goodness!  What a gift…what a fun creative expression!!  A new treasure for us indeed!  Thank you, thank you dear friends…

…this certainly is a special end to a special day…

Rudy ready to cheer for the "Santa Barbarians"!!!!!
Rudy ready to cheer for the “Santa Barbarians”!!!!!


Thanks to Rachel and Olivia, Rudy got a taste of the soccer action in between two nail biting wins for the Barbarians!
Thanks to Olivia and her teammate Rachel, Rudy got a taste of the soccer action in between two nail biting wins for the Barbarians!
Rudy stopped 'em all!
Rudy stopped ’em all!

Soaking up all that is rich!





Dear Friends,

It has been hard to put thoughts into words the past couple of weeks.  Daisy’s death was/is a tough loss in our community and an emotional hurdle for us.  Although the circumstances of the journeys were very different, the deaths of Katie almost 4 1/2 years ago, Logan 3 1/2 years ago, Nina 2 years ago and now Daisy remind us of the battle we are in (no matter how normal we try to conduct life with a medically fragile child)…it hits close and it hurts.

Once again….my response is to “circle the wagons” and protect.  This, however, has been difficult to do with our out-of-control schedule that literally has us up at dawn and going, going, going until we flop in bed at night.  The life of our family has us going in many different directions these days and it has been difficult for this mama’s heart to be motivated.  Adding insult to injury, I’ve had three interactions in the past week with agencies involved on some level with Rudy’s care that have made my blood boil.  Interactions involving incompetencies, inadequacies and inefficiencies that just shouldn’t BE!!!!  As much as I’d like to be the “Norma Rae” of my world, I’m tired and I just want to take care of my family without added hassle upon hassle with a few hoops thrown in!   It seriously makes me want to pull Rudy in close, close the door and do it all myself.  ARRRRRRGH….Sad, Frightened, ROYALLY Annoyed!!!

So all of this is churning around in my heart and head when a simple, off-handed comment in an elevator brings it all back into perspective…Rudy and I were at UCLA on Monday for a couple of of routine appointments and we rode the elevator with a doctor who knew us from our original 7 month stay but is not a “key” member of Rudy’s team.  She complimented Rudy on how great he looked and how big he is getting and then she looked at me and said “Wow, you haven’t been back for a long time.  That’s remarkable!”.  That’s it…that’s all she said but it served to remind me that our situation IS remarkable!  Yes, it’s tiring and frightening at times…it can make us feel frustrated and annoyed when dealing with the “system”…but the fact that we haven’t been back to the hospital for an unscheduled stay since May of 2009 is REMARKABLE…the fact that Rudy hasn’t had any major setbacks is REMARKABLE…his slow but steady developmental progress is REMARKABLE.  We don’t lose sight of the fact that each day is a gift (even the poopy, annoying ones)…each day is remarkable.

With that said, many are wondering where we stand now with Rudy’s treatment.  Today is the last of a string of specialist appointments we’ve had the past two weeks.  Rudy met his new SB Endocrinologist on Valentine’s Day, Dr. Candido-Vitto, after Dr. Lifshitz’s retirement in December.  We like her very much.  She is in agreement with the path of treatment Dr. Lifshitz took with Rudy and will continue to do the same.  Since treatment for his thyroid issues would be the same whether we know the cause or not, she, like Dr. Lifshitz, is not recommending we pursue further testing to determine the cause.  She will simply monitor his monthly blood work and adjust medication doses as needed. Currently there are no changes (good or bad) in his thyroid function.  We saw Dr. Woo (UCLA pulmonology) and Dr. Shapiro (UCLA Ear, Nose & Throat) on Monday and both were real quick check-ins.  Again, no changes good or bad.  Rudy’s stoma from his tracheostomy has not completely closed yet and I was hoping Dr. Shapiro would be willing to stitch it closed but she remains determined to let it heal on it’s own…it could take another several months.  Since I’m eager for it to close for PT reasons and to get him in a pool for swim lessons, she suggested we try a Tegaderm-type dressing so maybe swimming will be possible this summer after all…we’ll see.

Of course, we’re always eager to hear what Dr. Harake has to say…we saw him for our routine appointment last week (we see him every TWO months now!!!!).  Again there aren’t any major changes in Rudy’s heart function…still mild-moderate valve leakage, no increase in enlargement which is all good news.  Although we aren’t there yet, Dr. Harake does think it’s time to start talking with the transplant folks down at UCLA and gather information about a possible heart transplant.  Our understanding is that Rudy would not be considered for a heart transplant currently because of his pulmonary hypertension issues but I suppose it would be wise to gather the information and start wrapping our brain around the idea now before we find ourselves needing to make decisions in crisis.  It would be a difficult and terrifying leg of this journey and one we would not consider lightly.  So, I hope we can start a conversation with Dr. Alejos and other members of Rudy’s team soon.  Dr. Kelts (Gastroenterology) is ordering an ultrasound here in SB in the next couple of get a baseline on Rudy’s liver and spleen.  He suspects they are enlarged due to some back pressure from the heart (I think that’s what he said) given his distended belly and bulging belly veins.  Baseline information like this would also be helpful down the line to accurately assess the condition of these vital organs in the event a heart transplant is considered.

In between all the extra dr. consults this month, alotta life has been lived too!  Did I mention G’ma Jo is here?  She’s already in the middle of her 3 week stay with us…she was able to fly “outta Dodge” early and beat the wicked snow storm that hit the Kansas City area early last week and she jumped right into our schedule of  dr. appointments, SBRM graduation dinners, play practices, hockey games, soccer tourneys, drum comps, jazz festivals, school fundraiser, therapy, GS cookie booths, garage sale AND birthday parties!  Phew!  Take a look…

Rudy's Valentine's Day Smile 2-14-13
Rudy’s Valentine’s Day Smile 2-14-13
After an impatient and fitful display in Dr. Harake's waiting room, Rudy fell asleep during his echo...
After an impatient and fitful display in Dr. Harake’s waiting room, Rudy fell asleep during his echo…
...and he didn't want to wake up!  :)
…and he didn’t want to wake up! 🙂
An All-Star Soccer Tournament Win!
An All-Star Soccer Tournament Win for Olivia and her team!
Dr. Seuss Day at Rudy's school.
Dr. Seuss Day at Rudy’s school–his hat fit better upside-down so he rocked it that way!
Fun with G'ma Jo!
Fun with G’ma Jo!
Gotta get me some of them Thin Mints!!!
Gotta get me some of them Thin Mints!!!
Jazz musician Wilson
Jazz musician Wilson
Jog-a-thon fundraiser at La Patera...Go Tigers!
Jog-a-thon fundraiser at La Patera…Go Tigers!
Maxi's 14th Birthday isn't until Sunday but we celebrated with friends a week early!  fun, Fun, FUN!!!
Maxi’s 14th Birthday isn’t until Sunday but we celebrated with friends a week early! fun, Fun, FUN!!!
The fun included bumper cars...
The fun included bumper cars…
...bumper boats...
…bumper boats…
...go karts...
…go karts…
...lazer tag...
…lazer tag…
..and Five Guys...yum!
..and Five Guys…yum!
Rudy couldn't go on any of the rides but he sure had a big smile on his face celebrating his big brother!
Rudy couldn’t go on any of the rides but he sure had a big smile on his face celebrating his big brother!

Love to you all!  Have a remarkable day!!