Archive for June, 2011

Incoming!!!

June 29, 2011

‘Just a quick post to let you know that Rudy is finally on the mend.  The flu bug he had was a vicious one but he has been d-free for two days and smiley again so we’re confident he’s feeling better…just in time, too, as Oma and Opa arrived yesterday for a 2-week visit and in just 2 short days, ALL the Geylings/Connellys will make their way to our little slice of the West Coast for a long due family reunion!   Watch out Santa Barbara – The Geylings are coming!   It will be a special time to celebrate Franz and Helga’s 50th & family…there is a handful of Rolf’s family that hasn’t had the opportunity to meet Rudy yet so this time together will be significant for Rudy as well.   The final preparations are underway…

Cleaning up a little yard debris....

 

Rudy had his routine cardiology appointment with Dr. Harake this week…it was our first appt. with him since Rudy’s seizures and failed sleep study in May so we spent a good bit of time just catching up.  The echo showed no change in his heart condition (no further compromise) which is good.  Dr. Harake mentioned at our last appt that he might consider another heart cath (which would let us know what is going on specifically with his pulmonary pressures) in October but he feels, now, that maybe we’ll give him some more time and wait until the first of the year….that is if his heart function remains the same.  It’s hard to wait for the information a heart cath would provide but we’re thankful Rudy seems content and happy while we continue to wait.  After the hiccups of the past couple of months, we hope to settle into a calm where Rudy is concerned, enjoy the rest of the summer and not let our minds swirl about what might or might not happen in the fall.  Thank you for waiting this out with us…:) 

A recent "Greg Lawler " capturing Rudy in deep thought! 🙂

Flu Bug Fly Away!

June 23, 2011

The bug Rudy came down with over the weekend spread to me and Olivia (and, unfortunately, to two out of three house guests we had over the weekend!!!!  Yikes, sorry gals!).  I was miserably sick on Monday but thankfully it hit hard but ran it’s course quickly…I was moving slow but back on my feet on Tuesday.  Olivia was down for a couple of days but is back to normal now.  Rolf and the big boys have dodged it (knock on wood) but poor Rudy is still battling diarrhea.  I thought he was on the mend with an upgrade to “loose” stools yesterday but he’s back to the big D today so we’re praying this bug flys away soon.  Today is day 6 so we’re still on alert but we’ve managed to keep him hydrated and I think we’re within safe territory.  He’s getting his energy back and even attempted to join in the cul-de-sac fun yesterday on his little riding truck…

A Wheel Fest in the cul-de-sac...

 

Rudy didn't get too far...he was a little overwhelmed!

You may recall that Rudy’s endocrinologist took Rudy off his daily dose of Levothyroxine last month feeling as if Rudy might be ready to stop his thyroid treatment.  He dc’d the med temporarily with the order to add to his monthly blood draw to test his thyroid hormone levels.  Unfortunately, Dr. Lifshitz’s office called yesterday to let us know that his TSH is out of range and, therefore, we need to put him back on Levothyroxine.  -bummer-  Not a huge deal in the larger scheme of things but I was hoping for even a small victory…an indication of growth and progress somewhere within all his complex and compromised systems.  Ok, I get it, we’re still in limbo…and so we wait.

Happy Father’s Day!

June 19, 2011

Celebrating our Great, Tie-dyed Dad!

 

Unfortunately another virus is working it’s way through Rudy…he came down with a bad case of diarrhea and vomitting yesterday so we’re keeping a close eye on him and making sure he doesn’t get dehydrated.  As a result, our Father’s Day celebration is a quiet one here at home but hopefully we’ll be able to head out for a special dinner a little later.  How grateful we all are for Rolf…a loving Dad, good husband and faithful man of God.  It’s hard to be distracted by concerns for Rudy on a special day like today but it’s days like these that I’m most thankful for Rolf…for his partnership, for sharing the responsibilities of life with me and for his hands-on expressions of love toward all our kids.  So, today is filled with prayers of thanksgiving for who Rolf is to us and prayers for a speedy recovery for Rudy. 

Happy Father’s Day to all the special fathers we’re blessed to know!  🙂  Thank you for your continued prayers…

Nothin' says "Father's Day" like a trip to Home Depot and a wood project at home! Ha 🙂

June Gloom

June 15, 2011

I don’t know if it’s our typical dreary June weather or the disappointment over Rudy’s failed sleep study but the past couple of weeks have been pretty gloomy for me.  I fear we sound like a broken record but the reality is there is a daily battle to not give in to our fear and anxiety over Rudy.  Even with all the sweet and positive moments, there is a constant and nagging ache that reminds us that Rudy’s journey hurts. 

Thankfully there is always enough going on around here to distract us…

We took a day trip up the mountain to Lake Casitas late last week to enjoy the waterpark there with our Girl Scout troop of 20 girls!!!  With parents and siblings joining us our total count was 50 – it was quite a caravan!!!  Although the June gloom overcast didn’t burn off and the water was freezing, the kids had lots of fun and Rudy was comfortable with the absence of the heat…

Rudy observing the activity at the "Lazy River"

The water was so cold that Max and Livy's lips were about as blue as Rudy's! 🙂

Rudy and Wilson were content to sit back and watch the others play...

The kids spent some time cleaning out their rooms this week and, as always, unearthed fun old treasures to play with…Wilson introduced Rudy to “Heroscape” and when Rudy began to dismantle his battlefield, we diverted his attention with “Rescue Heroes”!  It’s fun to watch Rudy begin to interact with toys…

Brothers playing side by side.

Big boy fun!

It has been a long time coming but Rudy is beginning to micmic words much quicker these days…he’s figuring out a greater variety of sounds and beginning to assign meaning to his words.  I caught his latest word on video today…Happy Rudy!

Did you notice how his face lit up when he said “Daddy”?  🙂  – priceless.  That reminds me…Wilson entered a preaching contest at a teen conference he went to with the church youth group a few weeks ago.  The theme of the entries was to be “grace” and Wilson prepared a 5 minute sermonette on “Finding God’s grace in difficult circumstances”.  Essentially, he shared that the key to finding God’s grace in difficult circumstances is perspective and he used Rudy to illustrate.  He said that he could get real bummed that his baby brother has half-a-heart but instead he finds great pleasure and encouragement in Rudy’s enthusiastic greeting everytime he comes home from school…something he really looks forward to every day and how that’s evidence of God’s grace.  I agree with Wilson’s reflection…there’s nothing like a happy greeting from Rudy to help keep things in perspective!!  Happy June Everybody…God’s grace to you,

Yoga with Rudy…

June 7, 2011

We don’t know where he finds the time, but Rudy seems to have taken up yoga.  We believe some of this comes out of his practice of emptying out his crib several times a day.  There just comes a point when we tire of the game of putting everything back in there.  So I guess he needs to do something to occupy himself.  Maybe he’ll realize someday that throwing your pacifier away leaves you with decidedly fewer alternatives, but in the meantime we give you the Sucking Foot Pose.

Valuable Rudy swag will be awarded to anyone who sends a video proving their own mastery of the Sucking Foot.

 

And So Summer 2011 Begins…

June 3, 2011
With our week of promotions and final classroom parties all wrapped up, we officially welcome summer and look forward to all the fun to be had in the next couple of months.  We, once again, end another school year very grateful for the kids’ success and balance in the midst of a family journey that often feels anything but balanced.  Although life in our household appears more stable as time passes, the emotional stress is still pretty chronic and has it’s effect on all of us which is why Rolf and I are especially proud of the kids’ accomplishments…well done Olivia, Max and Wilson!   It’s on to 4th grade, 7th grade and 9th grade – 3 different schools (4, if we send Rudy to special ed preschool in October)!!!  Oh my…let’s not get ahead of ourselves…for now it’s all about summer!  🙂

Max's speech at his 6th grade promotion...

Max and Miss Grant

Wilson's last jr. high jazz performance at the 8th grade promotion ceremony...

Newly promoted member of the Class of 2015!

A strong 3rd grade finish for Olivia...she missed the "Perfect Attendance" award by ONE two-minute tardy in March!!! Bummer but we're sure proud of her diligence each day!!

Well done Rudy...you made it through all the ceremonies!

As Student Council President, Max was asked to share his reflections on his La Patera experience.  For our family record, we’re including it’s text below…

Good-Bye La Patera

I stand before you today as a better student, a better leader  and most of all a better person.  Hi, I’m Max Geyling – La Patera’s student council president.  I’ve had a great experience here and would love to share it.  I came to La Patera in third grade.  I was in Mrs. Clayton’s and Mrs. Hug’s class.  I met some nice kids that year but two really stand out, Thomas Jimenez and Fidel Lopez.  I met them when our teacher asked them to show me around.  As I got to know them I found out they were just as big of sports maniacs as me.  They’re like two other brothers to me and it’s been that way for a long time.  Well, at least up to when Fidel moved away after fourth grade, but I’ve made more friends too.

After third grade there was the dreaded switch to the upper grades.  Yea, the big 0-4, fourth grade.  One of the best things about fourth grade was being on the same schedule as the sixth graders so at recess I was able to be with my older brother Wilson. Also in fourth grade I had Mrs. Burrato, one of the nicest, most up beat, iced-tea drinking teachers I know.  Fourth grade was a great experience, I had my first overnight fieldtrips to Tall Ships and El Capitan (that’s fun to say).  I also learned alot about the watermelon on my first day, played my guitar in the school talent show and had my first kiss  – okay, just kidding.  One more thing that made that year unforgettable was when my little brother Rudy was born.

After my interesting year in fourth grade, it was on to fifth grade with Miss Grant.  You know one of the youngest teachers in the school with a split class of fifth and sixth graders.  What could possibly go wrong?  EVERYTHING, but luckily for us it didn’t.  Fifth grade was pretty fun.  We went to El Chorro for three days.  I played in the talent show again and I was voted vice president of the school, (turn to classmates) “Thank you guys.”  I also became the oldest sibling of my family in La Patera because Wilson was in Junior High and my sister Olivia was in second grade.

Finally, the reason I’m here with all you wonderful people – sixth grade!  I couldn’t think of a better way to end my time in elementary school.  First of all, I had Miss Grant again, but as a sixth grader and I went to Mr. Carrera for most of the subjects so Miss Grant could teach the fifth graders.  There was alot of running between classes that year, I mean, walking.  But anyway, sixth grade –  the year everyone waits and works for…why????  My teachers are right here so – for the learning!  Also, for CIMI – the greatest field trip ever.  Plus, my dad came so that made it better…well, did that really make it better?  No, it made it fantastic!  We went snorkeling,kayaking, tidepooling and we played some fun games.  Also this year I was voted President of the school.  It was awesome and it was an honor to hold this office.  I also couldn’t believe the fun activities at the end of the year.  I loved this year more than any other and I’m sad to see it go by.

I would like to thank all my teachers I’ve ever had…the ones at La Patera and the ones at the schools I’ve attended in the past.  And to my family – my dad, my mom, my siblings Wilson, Olivia and little Rudy.  Also, to Mrs. Santiago, the staff, and the wonderful students that make this school what it is.  For my last few words, I will say something I heard from a very reliable source – a movie. (ha) “Once a La Patera Tiger, always a La Patera Tiger!”.

A great summary Max…La Patera has been and will continue to be a wonderful blessing to our family. 

Rudy’s Medical Update:

We were deeply disappointed to hear from Dr. Pornchai yesterday that Rudy did not pass the sleep study.  We didn’t talk a whole lot of details – we’ll talk with him more at our routine appt. next month but, for now, it means we can’t move forward on decannultion.  Rudy will need to keep the trach and, I imagine, we’ll try again in another 6 months or so.  We really hoped for the  greenlight to decannulate and are sad to put that plan on hold again.  So, as always, one day at a time…

Thank you for your prayers.