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

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

Rudy was ready to cruise State Street…

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…

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…

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

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.

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…

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.

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,

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!

Gosh, sorry we haven’t posted in awhile…truth be told, I’ve been waiting to post the sleep study results but as of Friday, Rudy’s pulmonologist at UCLA hadn’t heard back from the folks at CHLA with the report yet so we’re still waiting.  Hopefully we’ll hear back this week.  I’m also waiting to hear confirmation on Rudy’s heart cath date in July so there are still a number of details that are up in the air for our family regarding the summer schedule which is making it hard for this type A personality to relax.  🙂  We have a day trip to UCLA on July 9th for a couple of appointments and then again later in the month for the heart cath with appts with Rudy’s specialists here in Santa Barbara in between so July will be full with medical stuff but I’m working hard to keep the rest of the summer medical appointment/procedure-free.

We celebrated another friend’s wedding, Mother’s Day, a couple of end-of-the-year school performances AND Rolf’s Birthday since we posted last!!!  We sure haven’t been lacking in celebrations this spring!  🙂  Rudy has hung in there through most of it but he sure prefers hanging out at home…especially now that we’re spending more time outdoors in our backyard.  Rudy is content to play in his wading pool for hours (if we’d let him) and laughs his big belly laugh while watching the big kids play their crazy games in the big pool.  He’s getting pretty cocky on his little trike too and likes to head full speed down the incline of our driveway into the cul-de-sac!  I have to admit that I’m beginning to wonder if the increase in physical activity puts too much strain on his half a heart…a heart-mom worry that I haven’t really experienced yet…but then again, I’m not sure he’d have it any other way and the quality of life benefit is certainly abundant so I try to tuck away the worry and trust God, as always, for every detail.

Here’s a quick look at some of the fun…

Okay, I’ll stop with the miscellaneous post for now…hopefully we’ll have something specific to report this week from UCLA!  Ever grateful…