‘Thought we’d share one more emerging skill for Rudy…we finally have possession of the speaking valve and Rudy is adjusting to it. The valve fits on Rudy’s trach and allows him to inhale through it but not exhale. As he exhales, the air is forced past his vocal cords and through his mouth allowing him to vocalize. He gets to wear it several times throughout the day for short periods of time as he gets used to the back pressure…here’s a couple of his first attempts:
I was spoiled this Mother’s Day…I received a lovely poem from Wilson, a pretty “I Love You Because” flower from Olivia, a cool abstract collage from Max and this from Rudy…
Yep, you saw it right! Rudy rolled over for the first time Sunday morning! This is something we’ve been working toward in his therapy and play at home for months so we were all very excited by this milestone accomplishment and Rudy seems pretty pleased with himself too! It’s an encouragement to see progress for sure. Rudy is making progress in all the areas tested by his therapy team but it is slow and sometimes hard to distinguish. Sunday’s milestone is a definite “roll in the right direction”! Interestingly, I had a meeting with the team from Regional Center on Monday to go over Rudy’s 18 month assessment and, for all you “therapy geeks” out there, his Approximate Age Equivalent in the various categories is as follows:
Fine Motor and Perceptual Skills – AAE is 9 months
Cognitive – AAE is 9 months
Language – AAE is 11 months for Receptive Language and 5 months for Expressive Language
Social/Emotional – AAE is 11 months
Self-Care/Feeding – AAE is 3 months
Gross Motor – AAE is 6 months
I’m encouraged…we’re not where I thought we’d be when we started his therapy a year ago but, then again, no one really knew what goals were realistic to set…I feel we’re still a bit clueless and naive about what can happen in the next 6-month assessment period but he’s progressing and that’s all that matters and Rudy’s new rolling trick sure beefs up the motivation to keep moving forward! 🙂
Things on the heart front remain stable. We had our monthy appointment with the SB cardiologist on Friday and nothing has changed which is good news for Rudy’s lungs. At the end of the echo, Dr. Harake said “Well, if we’re still on the same page, I recommend we continue to wait for the pulmonary hypertension drugs to do their work” to which I replied, “Of course…we’re just so anxious to see if they are making a difference” to which Dr. Harake replied, “We’re all anxious to find out”. I was comforted by his sincere, heartfelt reponse…I guess it reminded me that we’re not alone in this wait…that Rudy has a team of medical professionals asking similar questions and if it feels like we’re drifting out at sea sometimes, well, at least we have a network drifting along with us (kind of like our very own version of those AT&T network commercials – or is it Verizon?! Ha) So, we wait.
Many of you have been sweet to ask about my Dad and so I wanted to include a quick update and request for prayer as his latest MRI shows evidence that the cancer is no longer responding to his chemo…new lesions have shown up and because of their location far into the brain, surgery is not an option this time. There may be options, however, and my folks will know more once they meet with Dad’s doctors…we’ll just have to wait and see. Ahhhh “wait” (big sigh)! Although we remain hopeful, the reality of new cancer showing itself is heartbreaking and I ask you to lift my folks up in prayer as the next steps of their journey unfold. ‘Deeply grateful for the comfort that comes through the prayers of many!
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!
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.
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…
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 StellaStella 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…
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!!!
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 JoLaughs with Grandpa DickAnd even a nap or two...Meeting Uncle Rick and Aunt LeslieMeeting Uncle Steve and Aunt MichelleFun 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 UniversityOur NCAA ChampFuture 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 MexicoAnd an overnight stay on historic Route 66We 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!!
We’ve made a stop at a nice KOA a few miles east of Denver with WiFi so we thought we’d post a quick update on our trip…all is going very well! Rolf the driving machine has driven the entire trip so far and is handling the beast like a pro and I’ve been maintaining the cabin and so we’re a good team. Although our RV is probably one of the oldest in the Ventura Cruise America fleet and, therefore, not the prettiest, it is running well and managed across the Rockies yesterday without a hiccup so we can’t complain. We are laughing, though, because it IS getting us where we want to go but not without alot of rattling and alot of jostling. Let’s just say it isn’t the smoothest ride we’ve ever had which makes most of us feel a little worn at the end of the day but with the roaring white noise and the constant vibration in the cabin, we figure it is a VERY happy place for Rudy! He sure seems to be enjoying it and he seriously hasn’t fussed ONCE! He has been the most content baby I have ever seen on a road trip which only confirms that this trip was the right thing to do right now. We decided to take the faster “northern” route because the weather in Colorado looked like it was going to be clear so we blazed through California and Nevada on Wednesday, Utah and a good bit of Colorado yesterday and hope to make it all the way to Lawrence today. Our stops have been purposeful and quick and the kids have managed the pace pretty well. We haven’t stopped to DO much but we sure have seen some beautiful country on a familiar route that is fun to drive….
All Systems Go! Even Rudy's giving a thumbs-up!Rudy was wide-eyed and "cautious" the entire first day just taking it all in I think!Waving "goodbye" to the Rescue Mission Bye, bye to the coast! (Get used to this mirror--it's prominent in many of my pictures.)Nevada's High DesertVegas, Baby!We rolled into Vegas too late to visit our Tiffany & Co friends at the Bellagio so we hope to do that on our return trip!Rudy and pizza dough at our favorite stop in Vegas - Metro Pizza!End of Day One bedding down in St. George, Utah!Rudy is jealous...he wants to be up top too..."Nice Butt!" (a family joke that never gets old--though the amount of red rock you drive by in Utah might test this)The base of the Rockies!The winding Colorado River!Rudy likes his picture windowRudy did it! He made it to the top of the Rockies pink and smiling until we took him off oxygen to snap this pic at the Eisenhower Tunnel! Oops...Sorry Rudy, but someday you'll brag about being on THE HIGHEST FREEWAY IN THE WORLD (can you tell us that once more, Dad? We didn't hear you the first five.)
And so the adventure continues today across Western Kansas…thank you for sharing in the journey with us!
Rudy's Beat 