I just had to post the following link to a radio interview my dad did this week. If you have a minute, it’s a great interview for a wonderful cause. Dad is participating in the Head for the Cure 5K Race/Walk (www.headforthecure.org) on September 13th in Lawrence, KS in support of brain cancer research. Although he will be starting a new chemotherapy regimen this month, his doctor has given him the go-ahead to participate with a few precautions in place. Once again we cheer, “Run, Grandpa, Run”!!!
To hear the interview, click here, and then click the “Dick Wilson KLWN Radio” Bar to start!
Since we’re on the subject of links…here’s one more for you. Rudy made Greg Lawler’s photo blog again (not like we’re counting or anything!)…boy, do I wish I had his gift for capturing precious moments. Click Here!
We had such a full week getting settled into the new school year, doing normal life stuff and enjoying a fun visit from Aunt Andi who journeyed from Boston for a quick weekend visit. We apologize for not posting an update on Rudy’s condition in a while and will share specifics soon but for those of you who need a “Rudy fix”, check out the following pics…he’s very proud of his new baseball cap.
Okay, all that should be in school in the Geyling household are safely tucked in their classrooms and the major “closet purge” and “spring cleaning” here at home has begun! Rudy is sitting in his bouncy chair and comes with me from room to room wondering what in the world I’m doing.
We tried to recreate the first day of school fanfare for Max this morning…Wilson and Livy were kind of over it but Max was his typical enthusiastic self. We’re relieved his fever finally broke and we continue to pray Rudy doesn’t get the virus as fevers have a more complicated effect on him.
Yippy! It's a school day!!!Rudy's Sibs
Okay, Rudy and I are going to go figure out how to use the carpet cleaner in preparation for tomorrow’s home project…another new and exciting experience for the little guy!
…well, for half of our litter anyway. Poor Max has been battling a fever on and off since Friday and woke up with another this morning so all the hustle and bustle of the past week getting ready for school culminated in big tears when we told Max he couldn’t go to school today…he was crushed. We told him to look on the bright side – at least the pressure of “perfect attendance” is off his back! It is a bummer and not how he wanted to start off 5th grade but we hope to get him rested up, in to see the doctor this afternoon and past this bug lickety-split. Olivia was a little timid when we dropped her off at the elementary school by herself but she gave us a big hug and walked slowly onto the playground in search of a familiar face. Both Olivia and Max have teachers this year that we know well and who know of our family’s situation with Rudy so we’re certain they are in great hands for what could prove to be another wacky year of adjustment.
All smiles from the 2nd and 7th graders!
Fever cure: Chocolate donut with sprinkles?
After Olivia’s drop-off, we made our way to the Jr. High. Wilson proudly made his way up the walk to the courtyard where all the kids were hanging out waiting for the first bell to ring. We’re sure eager to hear how the day goes for him…it’s a big step movin’ up to Jr. High but for a boy who doesn’t like change, Wilson is facing this big adjustment with confidence and maturity. We’re so proud of all the kids and our prayers echo the ones we prayed last year at this time…that they will have a fun and successful year; be able to focus and be flexible during the unknowns of Rudy’s open heart surgery & post-op recovery; be met with compassion and sensitivity from their teachers and classmates on those days when it’s hard to be at school AND see God in tangible ways…comforted by His presence in our journey with Rudy this year.
And then there is Rudy…our little goofball continues to charm with his ever-growing smile which is sporting TWO new teeth. He has worked hard to cut those teeth the past couple of weeks chewing on anything he could get his hand on. We were warned not to let pets chew on Rudy’s various tubes and cords to his equipment but we didn’t expect to have issues with Rudy doing the chewing…like there isn’t enough to keep an eye on!
"Look Mommy! I can chew on the suction unit electrical cord!" O, good grief!
Since our last post, Rudy saw the Endocrinologist and Immunologist in town. No new information emerged as a result of these visits…just initial consults to review his history and get Rudy on their books. There were some changes made to his feeding schedule and respiratory treatments that leave us with a few questions but, all in all, I think we’re on the right track with his care. We still don’t have a specific time sheduled for the Glenn…Rudy’s next appointment with the cardiologist is in early September so hopefully we’ll know more then. We continue to pray for physical growth and strength (especially for his lungs and muscles) and that Rudy would start to tolerate baby food. Oh my, speaking of food…I forgot to feed the poor boy his mid-morning bottle and it’s now time for lunch! I’ve gotta run…the fast pace of the school year has begun!
When I was a little girl, I got a TON of stomach aches…strangely occuring on Monday mornings before school and most severe at the end of holiday breaks or summer vacations! 🙂 I eventually outgrew the nervous-tummy attacks (when I graduated from college! Ha Ha) and haven’t given my strange childhood disease much thought since then until this morning when I woke up with those familiar nagging symptoms of “the nervous tummy”. It has been brewing for a week or so as I anticipated facing today but, to be honest, I’m really surprised by the way I’m feeling.
Today is the one-year anniversary of Rudy’s initial diagnosis at a routine ultrasound when I was 27 weeks pregnant. I actually expected to approach this significant date on our family’s calendar feeling deep gratitude and joy over the fact that Rudy is with us and that our family made it through what turned out to be the greatest series of challenges we’ve ever faced. The reality, though, is that I’m feeling pretty sad today…there’s a big cloud hanging overhead and that nervous tummy is just churning away. Ironically, Rudy has an appointment with his cardiologist today making the memory of our first meeting with Dr. Harake and the grim confirmation a year ago even more vivid.
Not being one to dwell on the negative and because there is so much to be thankful for and celebrate, I feel a little blind-sided by the heaviness and grief. I’m sure there are many layers to what I’m feeling today…but I think that as much as today signifies the amazing steps Rudy has made in his journey of survival and recovery; it is also a vivid reminder that he still has only half a heart, that, just like last year at this time, we have an open-heart surgery and all the unknowns associated with it ahead of us and that we still need to make the conscious effort to take life one day at a time.
This is a little tangential but…I sat on the couch yesterday evening with tears pouring down my face as I watched the news coverage of Laura Ling and Euna Lee being reunited with their families. I felt so deeply the relief that Laura’s mom must have experienced when she hugged her daughter after months of unimaginable worry and it dawned on me that that’s what’s missing…after all these months with Rudy, we haven’t had our “sigh of relief”…and given the nature of Rudy’s defect, not sure we ever will. Hmmm, I’ll think about that another day.
Note to self, though, if I had had the presence of mind or the energy to do so, I would have planned a trip to Knotts Berry Farm this week…there’s nothin’ like a Knotts Funnel Cake or two to distract you from the blues!!
Okay, this picture makes me feel better...
P.S. Now that we have hit a significant “one year” milestone, we promise not to bore you with a string of “A year ago today….” posts with constant links to previous posts (like this ;-)). But reflection is certainly a big part of this journey and occasionally it’s helpful to look at how far we’ve come even if our larger our goal is to live in the moment and embrace whatever it holds.
Rudy had another appointment with his pediatrician yesterday and weighed in at 16lbs 7oz to which the doctor exclaimed “Rudy is getting closer to being on the growth chart!”. Woo – Hoo! In regards to “normal” baby stuff, things checked out fine…he got three immunization shots and Olivia got his lollipop. I have been delinquent in setting up appointments with the Immunologist and Endocrinologist in town and yesterday’s appointment reminded me of the pending authorizations so I came right home and got those appointments on the calendar. I don’t think there are specific concerns but because of Rudy’s history with immune deficiences and low thyroid function, it’s good to have follow-ups with these specialists…I have to admit, though, I grow weary of introducing Rudy and his medical history to so many new doctors…it feels like we’re spinning our wheels a bit filling out the same forms over and over and repeating the same information over and over for each new doctor’s records but I guess that’s part of “establishing a team”. Over time the doctors here in Santa Barbara will grow to know Rudy well and there will be security in that but for now, almost THREE months post-discharge, I still feel a little lost and scattered in the menagerie of Rudy’s care-management.
Rudy doesn’t seem any worse for the wear, though. He has been feeding well, smiling more and reaching for objects held out in front of him more and more. Our lazy days at home may be a little boring for me and the older kids, but Rudy sure loves ’em.
Rudy may be behind in many ways developmentally but no one can argue his stellar performance in the hair-growing department. After Dr. Rick accused us of blow-drying Rudy’s mane to get that frothy trademark look of his, I decided it was time to give the boy a real haircut. Wilson and Max didn’t have their first “big boy” haircuts until they were nearly 2 yrs. old…Rudy was way overdo at 9 months!!! So, with Rolf’s help holding the poor boy upright and still, the curls fell fast with every snip of my scissors. What emerged is a handsome boy looking well beyond his years (or months?). In addition, now that the rest of his hair is shorter, his bald spot in the back doesn’t look quite as obvious!
Lucky for us, Dr. Rick and his wife Dr. Susan were in town early this week and had time to stop by for dinner Monday evening. What fun it was to see them both and catch up while enjoying a summer BBQ rather than seeing Dr. Rick in the context of discussing Rudy’s medical condition bedside in the ICU. We tried hard not to pepper him with questions about work and the goings on at UCLA but it sounds like all are well. Although Rudy slept for a good bit of their visit, he did wake up long enough to study Dr. Rick’s face trying very hard to place him, I think. We were encouraged to hear Rick say that he thought Rudy had good color and appeared to be thriving at home. It’s SO FUN to have confirmation from someone who knows him so well!!! Rolf and I highly respect the professional relationship we have with Rudy’s medical team but we are also so very grateful for the emerging friendships within those professional boundaries…it sure helps to make the serious steps ahead in Rudy’s journey alot less intimidating!
Earlier on Monday, Rudy had therapy with Gwen and OT Chris. After the session, they assessed Rudy’s developmental level as that of a 4-month old. He’s definitely improving but we need to be prepared for the process to be a slow one. I found the information helpful…specifics to direct my prayer for Rudy in these weeks before the Glenn. The more he can master now the better but we also don’t want to overwork him…as always, a fine balance.
It was March of 1998 when Wilson attended his first “Grandpa Dick” road race in Santa Clara, CA sporting his “Run, Grandpa, Run” tshirt and very first pair of Nike running shoes! (I’d like to know how many of my Dad’s races I attended over the years.) Well, Olivia and I are headed to Kansas today for a little family reunion with my parents, brothers, sisters-in-law and some of my nieces and nephews to, you guessed it, run (or, in my case, WALK) a race with my Dad in Topeka.
When Dad was diagnosed with brain cancer in October (the same week Rudy was born), the plan for everyone to come home and cheer Dad on at the race was put on the calendar. Because Rudy’s second open heart surgery was likely going to happen right about now, we didn’t think we’d be able to make it but when the Glenn was pushed back, I was suddenly freed up to go!!! I hate that I have to leave Rolf and the boys at home but I’m grateful Olivia and I can be a part of such a special time to celebrate and embrace family. It will be a quick trip…a total of 48 hours but we’ll be sure to pack it full of fun.
Like Rudy, Grandpa Dick is proving himself strong in the face of a life-threatening condition. So many of you have commited to pray for him and I thank you…I know my parents appreciate the prayerful support as well! Recent MRIs have not detected any new cancer growth since his surgery in October and we praise God for allowing the exsisting cancer to be held a bay.
Life’s twists and turns and the timing of it all, of late, are curious to me and yet I’m so grateful for the assurance that, ultimately, everything is going to be okay…BETTER than okay because God’s hand is guiding every twist and turn and each step, if I choose to trust and not fight to control it all, is one closer to His best for me…His best for Rudy…His best for Gpa Dick, etc…you get the idea. 🙂 Alrighty, it’s time to go fly those friendly skies…
Can you guess what our new contraption is? Answer below:
We had a full, fun Fourth of July celebrating at the annual Rescue Mission BBQ Bash…a special time with our homeless guests, staff and residents complete with a fabulous bbq buffet thanks to chef Pat and his crew and carnival games (thanks Sherry and John!). Olivia and Max went early with me to help set up, Wilson and Rolf hung back with Rudy until the event started. Rudy spent most of his time tucked in his stroller in the shade but I think he liked his first 4th of July party. We got home at the end of the day hot and sticky so we all jumped in the pool to cool off…Rudy couldn’t join us in the water but has a new backyard patio pasttime he thinks is pretty cool (see pic below).
Time to celebrate!
We end the day so very thankful for Rolf’s team at the mission…a special group of people willing to spend their holiday throwing a fun party for a group of folks who are normally asked to leave public events rather than invited to them! The life of our family is richer for knowing them…here are just a few:
Me and Sherry!
Eddie and a pie in the face!
Olivia helping John with the raffle drawing!
Clean-up crew?
Now for the answer to our teaser-question above…drum roll please…
It's a "Bag o' Rudy"!!!
This just in from Rolf and the kids on their way to see fireworks!
Rudy's Beat 