Archive for June, 2012

Pimp My Ride!

June 25, 2012

Rudy got a very special delivery from Tri-County Mobility today…

Rudy’s new ride!

It took several months but Rudy’s new wheelchair arrived today…and after a few adjustments:

Greg from Tri-County and Wilson make the necessary adjustments.

Rudy was ready to cruise State Street…

Thank you Greg!!

We are so grateful for the many ways God has provided for Rudy’s mobility.  When our first attempt to get Rudy a wheelchair hit a frustrating dead end, we were incredibly blessed by the Ruppert family who passed down their daughter’s medical stroller to us almost 2 years ago (!!!) and just when Rudy started to outgrow the medical stroller, he qualified for CCS which opened the door for a second attempt at a wheelchair resulting in today’s delivery!   Wow!

Rudy also had cast molds made of his legs recently for the manufacturing of leg braces that we’ll start using in therapy…his cool Superman braces are due to arrive in the next few weeks so there are a couple of new adjustments ahead for Rudy in the DME (Durable Medical Equipment) department.

And all this excitement comes after a particularly full weekend that included…

…participating in a FB banana split party in support of Ryan Roberts (heart baby in Pittsburgh)…well, our little heart boy couldn’t stay awake but the rest of us enjoyed our ice cream!…

…a family trip to the drive-in to see, uh, sleep through “Brave”…

…sending Maxi off to summer camp at Emmanuel Heights for the week (missing him oodles already)…

…a trip to the ER with WILSON, this time, for some IV antibiotics to treat an infection in his leg…he’s thrilled…

…and, well, a pic that is just too cute not to post. Olivia has been extremely helpful in giving Rudy baths for me this summer…she’s spoiling me!

In addition to all the activity in our household, Rudy is starting to call the sibs by name…well, his names!  Wilson is “Bubba” (which we think is “Brother”), Max is “AppleD” (which we think is “Hi Buddy”) and Olivia is “I-ya”!  It is so precious and, of course, the big kids melt every time Rudy calls them by their nicknames.

He demonstrated that he’s really catching on to the name game when he called a local blog-friend by name as Rolf checked her blog for an update last night…we love you Daisy!

Okay, well I guess I better run…it appears I’ve been on the blog a little too long and not attending to Rudy much this afternoon given where he has ended up…

Poor boy…he didn’t quite make it to the paci behind his crib!

I guess this is just as good a place as any for a nap!

Life is swirling and we’re trying hard to savor each swirl!  Bless you friends!!

Medical Update

June 21, 2012

We are excited to report that we finally heard back from Dr. Woo’s (pulmonology) office with the results from Rudy’s April 16th sleep study and the word is “he did well”!  We have an appointment with Dr. Woo scheduled for July 9th so we’ll get a chance to talk with her directly and get more details then but for now we are grateful for encouraging results.  Unfortunately we won’t be able to start the process of weaning Rudy off the trach right away because Rudy’s next heart cath is so soon and if by some miracle it is determined that Rudy is a Glenn candidate after the cath, then the docs would prefer to keep Rudy trached as it’s much easier to vent him during procedures with the trach.  So, we’ll have to wait a bit more and see what develops in the next couple of months.

It was confirmed today at Rudy’s monthly cardiology appt that his heart cath is scheduled for August 1st at UCLA…he’ll be the first or second case on the schedule that day and, most likely, need to spend the night for observation.  Rudy’s heart looks about the same…Dr. Harake did report that Rudy’s right atrium is quite enlarged.  This is a rather common complication with HLHS hearts but he did say that this along with the coarctation of the aorta and the pulmonary hypertension are all potential obstacles to a successful Glenn.  We’ve talked about Rudy’s enlarged heart before but he seemed to indicate that the right atrium appears larger.  We’ll likely discuss this more after the cath but it’s a helpful (and somewhat sobering) reminder to us that success in treating Rudy’s pulmonary hypertension (which is what we’ve been focused on for so long) won’t necessarily give us a green light to the Glenn…there are quite a few variables that need to align to give Rudy  a chance at a successful Glenn procedure.  I really wish we could simplify the situation to a couple of neat and tidy “bullet points” that make all the information easier to digest but even in layman’s terms it’s complicated and that feels a little heavy.  (big sigh)

Sadly, today was also Rudy’s last day with Nurse Marecar.  Although nurses moving on is a common and understandable occurrence, it’s never easy to say goodbye to a special care-giver and adjust to someone new.  Nurse Marecar was Rudy’s school nurse who rode with him on the bus, accompanied him in the classroom and rode back home with him.  He was  happy to see Nurse “Keg” each school day and she will be greatly missed.  We wish her well, though, and thank her for her sweet care of Rudy these past 5 1/2 months.

Thank you Nurse Marecar!

Tomorrow we welcome Nurse Cat to “Team Rudy” and look forward to getting to know her more as she has committed to Rudy’s school gig for the summer.  Ever humbled and grateful for the village it takes to educate our son!  🙂

Thank you all for your commitment to pray!!!  There is much to praise God for – always – and much to continue to pray for – always!  Ever grateful for YOU…

Father’s Day 2012

June 17, 2012

It’s hard to believe another Father’s Day is quickly coming to a close!  In typical Geyling fashion, we enjoyed a simple celebration at home this afternoon after a fun morning at church.  Our day may have been filled with simple pleasures (i.e. pool time with friends, Fritos Bean Dip! and a Carvel ice cream cake) but there is also a far-from-simple, profound feeling of gratitude that isn’t overlooked on a day like today.  Gratitude for our family, in particular, and the many ways I see God’s grace and love  reflected in the kids…through their unique personalities, their individual gifts, their sensitivity toward God and others less fortunate and the different insights about our world they offer.  Rolf and I are truly blessed and I’m grateful to God that those blessings far outweigh the challenges and concerns that weigh heaviest on our hearts.

I’m pretty sure I’ve mentioned it before but my appreciation for Rolf grew with the arrival of each one of our kids…I fell in love with him all over again when he became a dad and demonstrated his commitment to our life together on a much deeper level with creativity and total engagement.  We have partnered well through the twists & turns of our life together and had some fun along the way.  I am grateful for his love, his hard work to provide for our family and literally build a roof over our heads and for his commitment to serve our community.  I’m glad I’m not the only one who recognizes his special qualities…click here and check out this special honor.

I’m also incredibly grateful on this Father’s Day for the fathers with whom God has blessed my life…the father I gained when I married Rolf…a man who is very thoughtful in his affirmation and exemplifies responsibility, commitment and loyalty.

My father-in-law, Franz – Spring 2012

And, my Dad who also modeled a very strong sense of responsibility and commitment as well as a the gift of discipline which were all enhanced by his friendly demeanor and contagious laugh,

My Dad, Dick Wilson – Spring 2010

Dad and the kids at KUs Allen Fieldhouse – Spring 2010

Although cancer took my dad much too soon, my love and appreciation for him remain a constant especially as I grow in my understanding of what it requires to be a parent…there are many things I choose to do as a parent that can be traced back to him.  🙂

Ah, there is much to be grateful for and celebrate in the men that have filled my life…blessings I pray I never take for granted!

Rolf sporting the traditional handmade Father’s Day Tshirt…He’s definitely our SUP (Stand Up Paddleboard) King!

It is SO RIGHT for us to take the time to stop and honor the men in our lives that work hard to make right choices with the best interest of those they love in mind.  Well done men and may you know how very much our world is richer because of individuals like you!  Happy Father’s Day to all the Dads out there!

“If You Give A Pig A Pancake”

June 13, 2012

Life imitated art recently when we had a rare Saturday morning pancake feast with all the yummy fixings!  Rudy joined us at the table and the events that unfolded were straight out of Laura Numeroff’s classic tale…remember?  “If you give a pig a pancake, she’ll want some syrup to go with it.  You’ll give her some of your favorite maple syrup.  She’ll  probably get all sticky so she’ll want to take a bath.”…and so the story goes with a domino effect of crazy happenings.  

Rudy, who continues to show more and more interest in food, wanted a pancake as the plate was being passed around.  Although he isn’t actually eating solid food yet, he wasn’t quite content to play with just the pancake…he wanted some syrup too.  It wasn’t long before Rudy coated himself with the sticky syrup and, you guessed it, needed to take a bath.  Olivia and Max offered to give him a bath while I cleaned up the kitchen but I admit there wasn’t much cleaning going on…I couldn’t resist sitting outside the bathroom door and listening to how the whole bath scene unfolded!  The two big sibs struggled with the energetic, squirrel-y and squawking toddler for an entertaining bath time that included a lot of singing and giggling… some of the more memorable quotes I heard from behind the closed door included…

Olivia to Max – “Max, Are you as sweaty as I am right now?

Max to Rudy – “Put your hands in the air and let’s get CRAZY!”

Olivia to Rudy – “Rudy, NO!!  You don’t have your pants on!

The whole morning was a sweet snapshot of normalcy and I enjoyed soaking it all in – even if the process tested my OCD boundaries!  Ha Ha

Speaking of favorite children’s book authors, the big sibs introduced Rudy to a Sandra Boynton book new to our library this week.  They, of course, have a bit different presentation style than we did when we read “Barnyard Dance” to them years ago…

Rudy couldn’t be more pleased to have his sibs home for summer.  This week has been spent purging and organizing bedrooms, catching up on odd jobs around the house and running errands in Ventura today.  Summer school and camps start next week.  Here’s a little pictorial recap of our summer so far…

We had breakfast in Summerland on our first day of summer…yum!  And, no, Rudy was not allowed to play with the syrup!

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We unearthed a ton of fun hand-me-downs for Rudy during the major room purge…including the once coveted Jedi robes (circa 2002)!!!  Aaawwwww…

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Olivia signed up for the summer reading program at our local library and Rudy was happy to follow in her footsteps!  

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The big kids are all taking on more responsibility and are more and more helpful with Rudy…Olivia even wanted to learn how to change Rudy’s trach this morning.  Rudy sat still and Olivia did a good job.  🙂

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 Rudy at Refugio Beach!

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And so our summer is off to a great start…we have a slew of doctor appointments next week and a new therapy schedule to coincide with Rudy’s new summer school schedule so we’ll have some adjustments next week but for now we’ll enjoy the last couple of unstructured days we’ll have for a few weeks.