Well, I’d say our trip down south to Knott’s Berry Farm was a big success.  We were up by 6am, in the car a little after 7am for the 2 1/2 hour drive to Buena Park and at the park by the time it opened!  Of course the 20 minutes it took us to get Rudy’s rig all set up and packed was agony for the big kids as they waited in view of the main gate so we sent them ahead to scope things out!  Once inside the park, we hit the ground running as we towed Rudy behind in his wagon.  Olivia decided she was up to try the wilder coasters so she started off with Rolf and the boys on a tame coaster at Camp Snoopy and when the ride was over, she was hooked!  From there she graduated straight to the “big rides” and was off with big brothers to tackle “Jaguar” and “Montezuma’s Revenge” without hesitation!  With the help of our good friends from L.A., we set up a base camp somewhere far from the roar of the coasters (Rudy DID NOT like the loud sounds and screams from the coasters) and then we were all free to come and go in different configurations to ride a ride, go for a food run or window shop all the while giving Rudy a chance to spread out on a table and enjoy the beautiful day and all the fun people to watch.  How in the world did we do amusement parks before cell phones?  When the big kids made their way through all the rides in one section, we’d pack up and move base camp to the next section of the park and so on…as long as we found a spot far away from the crowds, Rudy was content.

The hours passed quickly and finally it dawned on us in the late afternoon that maybe there was a ride Rudy could ride…so the whole gang headed back to Camp Snoopy to find an appropriate “Rudy ride”.  Not knowing they had special passes for handicapped kids allowing them to go to the front of the line, we waited in line for the “Balloon Race” reminiscing about standing in the very same line for the first time 11 years ago with Wilson…with Max a couple of years later… and then with Olivia a couple of years after that.  And there we were again with everyone anticipating Rudy’s first ride and wondering if he was going to like it.  We got him and his oxygen loaded in next  to Max and Rolf and he was all smiles!

Although the thought of waiting another 5-6 months for the Glenn conjures up some anxiety, it does mean we have another summer at home under one roof and that is a huge blessing…priceless time!  The time we spend waiting can be filled with alot of playing!  We got a jump start on the summer with a rare trip to the park yesterday.  The park we went to had a perfect swing for Rudy and he had some special outdoor time with his gal pal Stella:

I know waiting is the best option for Rudy’s lungs as we want to give them time to grow and heal.  But so often in this journey (as is true in most health crisis situations, I suppose) it feels like the necessary treatments require a sacrifice of one thing for the well being of another.  One of my big concerns for Rudy in waiting for his heart surgery is how it will effect his overall development.  Rudy is actually due for his 18 month assessment later this month with the OT/PT services we receive and it will be interesting to see where his developmental delay falls in general but since he still isn’t sitting on his own or bearing much of his weight, there are some areas where I guess he is still registering in the 3-5 month range.  The longer we wait, the deeper the hole he’ll have to climb out of so to speak!  ‘Just opens up alot of questions for me…will he catch up?…how long will it be before he sits up…crawls…walks?  Will there be a day when we put a spoon to his mouth and he doesn’t gag…when he’ll be able to feed himself?!  Now that Rudy is transitioning from being a baby to a toddler it’s hard to not look down the road (something I’ve made a conscious effort NOT to do the past 18 months) and wonder.

I must add, however, that even though Rudy’s delays are becoming more and more obvious the bigger he gets, we don’t overlook or take for granted the huge steps forward he has taken…just this past week Rudy tolerated being on his stomach for a few minutes during his therapy session which gave us cause to celebrate!   We’re also enjoying seeing his happy personality emerge more and more…he’s a bit of goof ball, too, as you can see in the following video:

With the added therapeutic-play benefit of having brothers and sister home during the summer, we’ll no doubt see progress in the areas of Wii playing, drum pounding and craft making!  🙂  Baby steps…

The unusually wet and cooler weather we’ve had this winter broke and we’re enjoying spring in full force around here.  Olivia snapped these pretty pics on a walk to see the ducks this weekend…

Life has picked up in full force as well with a bunch of school events and evening commitments…it’s good to be busy and in the midst of it all, Rudy just goes with the flow.  Rudy had his monthly cardiology appointment a week ago Friday with Dr. Harake and things remain the same.  Many have inquired whether or not Rudy’s new pulmonary hypertension drugs are making a difference and that’s just not something we’ll be able to detect in his routine echocardiograms.  Dr. Harake confirmed that we’ll have to schedule another heart cath at some point before we can proceed.  And so, we all wait as expected…but in the meantime, Rudy is not far from everyone’s mind down at UCLA as Dr. Harake told me that when he’s introduced to someone new in the ICU now, he’s introduced as “Rudy’s Doctor”!  How cute is that!!! 

We are grateful for this time, though, and see it as our window of opportunity to take the family back to Kansas over spring break to see my family.  This has been my heart’s desire ever since Rudy was born and my Dad was diagnosed with brain cancer.  The plan was to go after Rudy recovered from the Glenn but with it being pushed back as far as it has, even Rudy’s doctors feel like now is the time.  They have given us the greenlight to go as long as we don’t fly so we’re renting a RV and plan to hit the road next week for what will, no doubt, prove to be a memorable family adventure!   I’m both nervous and excited and consider it a real gift to be making this family trip WITH Rudy!  Stay tuned….

As I was busy organizing Rudy’s medical supplies for the trip, the big kids asked if they could borrow Rudy’s wagon to which I said “yes” assuming they were going to use it to give each other a ride or collect treasures of some kind…it wasn’t until “after the fact” that Rolf and I found out about the natural progression of BMX stunt tricks happening in our cul-de-sac…I suppose I should pay more attention should the children ask to borrow both the wagon AND Rudy next time!

Shortly after the filming of this video, Olivia made another donation to “Locks of Love”…a cool, summer look to coincide with the warmer temps:

Another indication that time is marching on…summer will be here before we know it!

Speaking of time marching on, our soon-to-be 13 year old is becoming a young man…Wilson participated in a 30 hour fast with his church youth group this weekend to bring awareness to hunger and poverty in the world today.  During the “30 Hour Famine”, the kids walked through the neighborhood collecting canned goods for local families in need, built a food pantry in our church library, served dinner to the homeless at the Rescue Mission and slept outside in cardboard boxes.  I kind of braced myself for him to come home tired and grumpy after the challenge of the famine but instead he came home clearly moved by the experience, energized and upbeat.  At one point, the group watched a video about kids in need in Africa and Wilson said he couldn’t help but think about Rudy and how he probably wouldn’t have survived if he had been born in a place like he saw in the video.  So true…how truly blessed we are and how very much we have to share!  A powerful lesson for Wilson this weekend that I pray helps shape in him a lifetime of giving!

 Okay, I’m off to do a little packing…

Max turns eleven years old tonight and we’ve had fun celebrating him in a variety of ways…cupcakes with his classmates and dinner at Chili’s with the family yesterday and a special Subway sandwich delivery at school today!  Max’s big birthday wish is a family day trip to Knott’s Berry Farm which we plan to take next month…something fun to look forward to…:-)

Two of the things we love most about Max is his ability to create fun and embrace his passions in life…qualities that are often displayed in our cul-de-sac:

(last weekend’s impromtu BMX stunt run)

I’m so glad Rudy has Max in his life…to show him how to live it to the fullest!  Happy Birthday Maxo!!

A big thanks to everyone for all the birthday greetings and well-wishes.  My birthday officially marks the start of the Geyling “birthday season” as mine is in February, Max’s is in March, Wilson’s is in April and Rolf’s is in May!   Poor Livy was all by herself in September until Rudy came along and added October to the line-up!  Ha Ha   At least we have alot of upcoming activity to fill our time as we wait for news of Rudy’s surgery.  Unfortunately, Rudy has yet to start the two new meds prescribed THREE WEEKS ago due to a few challenges in obtaining the proper authorizations, etc, etc, etc…We see Dr. Harake again on Friday so surely we’ll get it all squared away by then.

In the meantime, we thought you’d enjoy seeing some of our recent miscellaneous fun…

 (The following “cool pics” are courtesy of Greg Lawler!)

Wilson was the substitute drummer at church this weekend!  I sent Max up front to catch a little footage of Wilson’s debut…the video is a little bouncy because Max got into the moment and started dancing as he filmed!   🙂  Oh well…it’s fun nonetheless!