Archive for April, 2010

Need A Summer Project?

April 30, 2010

As many of you know, summer is when the kids and I work on handmade Christmas gifts…it’s not as “Martha Stewart” as it sounds but I have found that the tradition of making Christmas gifts in the summer gives us a project to work on together with no stress and no time-constraints!  I’ve already started searching through my craftbooks looking for ideas and getting Olivia’s approval on certain projects.  🙂  As I was elbow deep in my craft cupboard taking inventory of our supplies, I came across a stash of material left over from past projects and I was reminded of a design idea I’ve been mulling over in my head since Rudy was in the hospital so I decided to act on it and make my prototype.  As a result, the “Rudy Roll” was born this week!

The Rudy Roll

As is common practice in the NICU/PICU, nurses would roll up hospital receiving blankets while Rudy was in the hospital to help position him a certain way or prop up his ventilator tubes/IV lines or put behind his neck when changing his trach, etc….  Rudy stared at the blanket rolls hour after hour and so there were times when the nurses would switch out one of these rolls for a small stuffed animal for some variety and fun.  It wasn’t long before I began thinking about an alternative to the blanket roll and because I consumed a truckload of Tootsie Rolls during this time (it was Halloween and we kept a pumpkin full of candy in Rudy’s room – big mistake!) my design, oddly enough,  looked much like a Tootsie roll!  I haven’t had the time or energy to act on my idea but with summer almost upon us, I thought now would be a good time!  My hope is to work on them this summer (hopefully with the kids’ help), go green by using up all my scrap material and have a stash ready to deliver when we go back to UCLA for Rudy’s next heart cath sometime in the fall!

So, if you’re looking for a fun, super-easy project this summer, will you consider joining me in making “Rudy Rolls”?  You can donate them to your local hospital’s Pediatric Intensive Care Unit OR mail them to us and we’ll see they get to UCLA!  I’m including the instructions below as well as the description I’ll include with the ones we give out.  It’s great for “Mommy & Me” or “Grandma & Me” projects as well as a Girl Scout or Bible Study Service Project!

Rudy’s therapist arrived as I was finishing up my prototype and she chuckled at the fact that there are alot of things named after Rudy…Rudy’s bracelet, Rudy’s Heart Pendant and now the Rudy Roll.  It does seem a little over the top but, once again, I find it therapeutic to come up with ideas that are potentially meaningful or useful and then to see the idea come into existence is pretty energizing!  So pull out all that scrap material, grab a bowl of Tootsie Rolls and have a fun afternoon creating!!!

“Rudy Roll”

Instructions

 Materials:  Bright colored, soft material (one yard of material will make 9 newborn/preemie Rudy rolls OR 6 baby/toddler Rudy rolls); Non-allergenic, washable Poly-fil; Satin ribbon.  Supplies: Sewing machine, thread, scissors and ruler.

 

Step 1: Cut two strips of material 21”x 4”

(for newborns and preemies)

Cut two strips of material 21”x 6”

(for older babies and toddlers)

Step 2:  Put right sides together and sew along both of the 21” sides leaving the ends open.

Step 3:   Turn right side out.

Step 4:  Measure 4” in from one end and sew end shut.

Step 5:  Stuff your roll with Poly-fil through the open end until soft but firm. Leave a 4” excess of material on the other end and sew end shut.

Step 6: Gather your ends where you sewed them shut and tie TIGHT (double knot) with a piece of satin ribbon.

You did it!  Well done!!!

***********************

The Rudy Roll!

Designed with ICU babies and toddlers in mind, the Rudy roll is a soft, bright-colored bed companion perfect for…

–          positioning baby,

–          propping up ventilator tubes and IV lines,

–          Physical Therapy exercises,

–          positioning trach babies for trach changes,

–          sword fights with doctors and nurses,

–          or, simply, grabbing hold and snuggling.

The Rudy Roll was inspired by our son whose 7-month hospital stay after birth included thousands of hours staring at hospital receiving blankets rolled up to serve the same purpose.  We hope your child will find the Rudy roll interesting to look at, fun to play with and, most importantly, will feel the love and support that accompanies it!

God bless you and your family, The Geyling Family

www.rudysbeat.wordpress.com

Note:  The Rudy roll is filled with non-allergenic, washable Poly-fil.

You can throw it in the wash for easy cleaning.  Satin ribbons on the ends may need to retied after washing.

 

Funnel Cakes and Smiles!

April 25, 2010

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.

Snoopy and our Roller Coaster Maniac!

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!

It has been a few years since they sat on this ride...

 

Ready to ride Rudy?

I have to admit that both Rolf and I were a little misty-eyed when the ride was over…it was surprisingly emotional to see our little Rudy looking like his age and enjoying something so new.  The sweet gal operating the ride was touched too and when Rolf asked her if it would be okay for Rudy to take another ride with me she gave us an enthusiastic yes…
Next, we made our way to the  Choo-Choo Train…
And, finally, the kids took a spin on the truck ride….

'Not sure we imagined getting a pic like this one when we started our day at Knotts but I'm sure glad we did! Precious!

Shortly after the truck ride, Rudy fell fast asleep in his wagon rig and we spent the last couple of hours making our way back to the top favorite rides for one last turn.  We walked out of the park as it was closing at 10pm, loaded up, stopped for a quick dinner at Del Taco (we miss Del Taco), got on the road and pulled in at home at 1:30am!!!!  Needless to say, we played hookie from church this morning and slept in!  🙂
What a treat it was to have a carefree (emphasis on “carefree”) day with the family…full of funnel cakes and smiles.  Thanks for sharing both the concern and the carefree with us…we are blessed.
Here’s a few more of the smiles…

A Captive, uh, Audience…

April 23, 2010

Rolf and I walked into the kitchen this evening to find our rock n’ rollers rocking out to Green Day.  Since we asked them to keep an eye on Rudy, I expected to see Rudy in his chair watching the stellar performance in awe.  Well, see for yourself…be sure to turn your volume up to 100% for the full effect…

I guess if you learned to sleep in an ICU, you can sleep anywhere.  I’m glad Rudy is getting a good nap…we’re off to Knotts Berry Farm for a belated family birthday celebration early tomorrow morning.  I think Rudy will either LOVE it or HATE it…we couldn’t have more excited big kids though!  🙂  We’ll let you know how it goes…

Wait time = Play time

April 18, 2010

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:

Rudy and Stella

Stella showing Rudy how it's done!

Deep down inside Rudy is loving his playdate with Stella!

A picture of concentration

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…

“Happy Birthday Teenager!”

April 9, 2010

Happy 13th Birthday Wilson!

It’s official!  As of 1:50pm this afternoon, we have a teenager in the house…Wilson turned 13 today!!  We enjoyed a family celebration tonight at Palazzio’s (Wilson’s choice) for dinner and then we walked down State St. to Rite Aid for ice cream.  In between, we made a quick trip to Wilson’s “happiest place on earth”…no, not Disneyland but Borders bookstore…where Wilson happily spent some of his bday money and now he and Rolf are watching a late night showing of “Clash of the Titans” in 3D at the Arlington!  A super end to a full week of settling back in and catching up on Dr. appointments…

In a nutshell, it looks like Rudy weathered the trip well as everything checked out stable this week.  We saw Rudy’s pulmonologist at UCLA on Tuesday and he was pleased to see Rudy so animated and active.  He remains optimistic that his lungs will improve in time and was encouraged by Rudy’s general condition.  At 29 pounds 9 0z, Rudy shot up to the 90th percentile for weight but remains at the 10-25th percentile for height (31in) so we’re cutting back on his feeds a bit.  The other big development is the addition of a Passey-Muir valve.  It’s an attachment that will go on Rudy’s trach allowing him to vocalize.  We’re so excited and hope that Apria is uncharacteristically efficient in processing the prescription so we can get started teaching Rudy how to talk!!!  Ha Ha

Dr. Harake confirmed today through Rudy’s monthly echo that his heart is stable…no significant changes.  This is good news and allows us to give Rudy’s lungs more time to heal.  In fact, if the heart remains stable, Dr. Harake won’t schedule the next heart cath before September…giving the pulmonary hypertension drugs a full 6 months to do their magic.  Based on some earlier conversations, I had in mind that we would possibly move forward toward the Glenn over the summer so today’s information requires another mental adjustment for me but I know that in the long run waiting is the better option for Rudy’s lungs and, prayerfully, heart.  In retrospect we’ll look back on all this and see the wisdom in God’s timing…right?  🙂

Our "night on the town"!

But, for now, it’s all about celebrating Wilson (You’re so fun to celebrate Wil!) and enjoying the fabulous weekend we have ahead of  us!  ‘Wishing you all a restful weekend too!!!

One Year later…

April 7, 2010
It’s April 7th…APRIL 7th!!!  Perhaps only the most astute Rudy’s Beat followers will note that date, but for our family, I don’t think it’s a date we’ll ever forget.  One year ago, it was the day we wondered would ever come; the day we got to bring Rudy home from the hospital.  Maybe he missed the place a little and went back for a couple weeks before he was home for good, but we’ll never forget seeing those indefinite conversations begin to include ruminations of discharge dates.  First the windows were spoken of in terms of potential weeks (give or take); then certainty increased and actual days and dates were pinpointed.  Of course, the Rudycoaster made for a few fits and starts, but few days defy description like the one that saw seven months in the hospital come to an end.
…and it’s been a year.  The docs were hoping that we could get Rudy out of the hospital for even as little as four to six weeks, just to create a bit of space before he needed to go back for the Glenn.  I believe it was Dr. Rick who held forth that, beyond any medical reason, he felt it was important for Rudy to know what home was.  That it was nothing like the regulated environment of the ICU.   The bed is comfier at home–and you can snuggle in your sister’s, brothers’ or parents’ too.  It’s warm sometimes, cold others.   It gets light in the morning, dark at night, and flickers when the sun comes in through the trees.  There’s noise from brothers, sisters and birds outside the window.  There’s laughing, dancing, singing, nerf wars and wrestling matches.  The room can smell like flowers, dinner (when Trish cooks) or Febreze (when Trish cooks tacos).  Things change; there’s variety–hopefully experiencing that will instill a desire to fight his way out faster next time. 
We’ve stayed put more than any other year we can remember, but have also been able to have our share of adventure.  There’s no way around the trite observation of how quickly twelve months have flown by.  They’ve been stuffed with the emotions and stresses that we’ve come to see as part of this unique journey.  But along with the challenges come particular riches and beauty.  We’ve been blessed to have twelve months of that.
Great to have you home, Rudy!

 

April 7, 2009--home at last...

April 7, 2010–Still home, still happy!
We never get tired of reliving that day.  I think we’ll be watching this a few more times in our home tonight…

Greg's Discharge Day Slideshow

Home Safe and Sound!

April 5, 2010
Happy Belated Easter Dear Ones!  We send our greetings from Santa Barbara…home safe and sound after our visit to Kansas.  Our intention was to post throughout the trip but we ended up without WiFi access along the way and then we got home to find our WiFi at home wasn’t working (!) so here is a belated pictoral recap of our fun picking up where I left off in the last post.

Before our final push to Lawrence, we made a quick stop in western Kansas to visit my mom’s hometown – a special childhood summer destination for me!  We had a photo shoot at the family gravesite and the kids learned a bit more about my maternal grandparents…especially meaningful for me as Rudy was named, in part, after my grandpa Clint.

Once in Lawrence, we enjoyed special time with family…

Smiles with Grandma Jo

Laughs with Grandpa Dick

And even a nap or two...

Meeting Uncle Rick and Aunt Leslie

Meeting Uncle Steve and Aunt Michelle

Fun with the Wilson cousins (sans Rachel, Rob and Stefanie)

Another highlight of our stay was a quick trip to Allen Field House and the KU Hall of Fame where Grandpa Dick is honored for his track and field accomplishments.

Allen Field House: Home of the Jayhawks - Kansas University

Our NCAA Champ

Future Jayhawk?

Time to say goodbye...

After great visits with extended family, special friends and Rudy supporters from First Baptist, it was time to load up the beast and get back on the road.  We hoped to return home via the Colorado Rockies but because of a big mountain snow storm, we were forced to head south through Oklahoma. 

Our trek through Oklahoma offered a special greeting to Rudy and...

...an impromtu pit stop with Smitty! (Our Christian Assembly friends will appreciate this pic)

The Smiths (sans Sunny)

Our trek continued through New Mexico

And an overnight stay on historic Route 66

We set up the RV for our last overnighter in Arizona...yep, we're all looking forward to getting back to our own beds!

On our last travel day, we decided to take the extra time to head back to Las Vegas so we could see Hoover Dam.  Thanks to Hollywood the boys were excited about the stop as well…I mean, who WOULDN’T want to see where the government hid the Transformers?  So we drove via the dam road, to take a dam picture and visit the dam gift shop.  Yep, that joke got ALOT of mileage throughout the day…

The Impressive Hoover Dam

Our lunch stop in Vegas included a visit to the home of "Pawn Stars" - one of our family favorites!

Rick, the Old Man, Big Hoss and Chum Lee weren't in on a Saturday but the security guard took a special interest in Rudy and was sweet to the family.

 We also timed it well to stop in at the Bellagio Tiffany & Co to say a special hello to Rudy’s friends

 

A big thank you to the Bellagio team for their warm welcome!

 

Rudy liked the Bellagio water show...

California, Nevada, Utah, Colorado, Kansas, Oklahoma, New Mexico, Texas, Arizona and back through Nevada and California all in a total of 6 days on the road!!!  Rudy experienced countless new adventures, met family and new friends and turned 18 months old – an adventure well worth all the effort…here’s to many more adventures and memorable travels!

The end of an eventful trip - Happy 18 months Rudy!!!!

Thanks so much for praying for our safe return…as it turns out, we missed more than a couple of bad storms and caught a couple of big problems with the RV before they became big problems for us on the road!  We are blessed!

Rudy and I will be hitting the road again early tomorrow (Tuesday) morning for an appointment with the Pulmonolgist at UCLA…the first of 4 doctor appointments this week!  Maybe we’ll have some new information to share…I’ll keep you posted!!