With school now underway, it’s time to look ahead and do a little planning because  in five short weeks Rudy will turn 2 years old!!!  An astounding realization and one that brings tears of both deep joy and a bit of anxiety as we continue to live life from one monthly cardiology appointment to the next eagerly awaiting the Glenn!  The “not knowing” has always been the hardest part of this wait but having a productive distraction definitely helps and so in lieu of a party and all the gifts this year, our family will be walking in the American Heart Association’s Start! Santa Barbara Heart Walk on October 9th in celebration of Rudy’s birthday and we would like to invite you to join us!

By participating in this year’s Heart Walk, we hope to raise research funds vital to a healthy and active future for Rudy and kids like him. Will you consider  joining our campaign by donating today or joining our team in honor of Rudy?  We are excited that the money raised by our team will fund pediatric research and children’s programs specifically!!  Click on the link below to visit our family’s personal donation page where you can learn more:

http://sbheartwalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=329126&supid=292183374

As team captain of Dr. Harake’s team, my goal is to recruit 15 team members.  If you are interested in registering for the walk, please follow this link to our team page:

http://sbheartwalk.kintera.org/faf/search/searchTeamPart.asp?ievent=329126&lis=1&kntae329126=443716683665467C9F2B56C541AEFFC9&supId=0&team=3870994&cj=Y

It’s impossible for us to come to a major milestone with Rudy and not think of the precious heart friends we have lost in the last 24 months…Katie M, Baby Angel, Ethan S, Logan E, Josiah W…  and so we walk not only in honor of Rudy but also in loving memory of these precious ones whose short lives impacted us deeply.

Thank you, in advance, for helping to make a difference because your donation WILL make a difference.  Rudy’s condition was a death sentence less than 20 years ago and now there is a sophisticated treatment plan born out of research and development!  Imagine what could be done with an even greater understand of the defect!!!  We are honored to partner in this effort.

Of course, it’s not all business!  For those of you who are close enough to walk the walk in person, we will gather at beautiful Chase Palm Park the morning of the event, distribute “Rudy blue” Happy Birthday balloons to all the “party walkers” and celebrate with cake, ice cream and party favors at the finish line!!  What better way is there to spend a gorgeous October morning in Santa Barbara?  We hope you can be a part of the fun!  ‘Just let me know you’ll be coming and I’ll send you more information.  🙂

The morning hustle and bustle is back but, I must admit, it’s amazing how much easier the “before school routine” gets as the kids get older.  Olivia set her alarm last night and was up, had breakfast, got dressed and brushed her hair/teeth AND made her bed while I was in the shower (and I take short showers!).  All I did this morning was make the lunches and Olivia even started that process before I could get to the kitchen.  All were in good spirits this morning and seemed both nervous and eager to get to school…definitely excited to reconnect with old friends and I’m hoping they all make fun, new friends this year as well.   This is a big year for both boys as they are “top dogs” on their campuses…having a 6th and 8th grader means two promotion/graduations at the end of the year!  🙂  My prayer for them both is that they will demonstrate responsibility and leadership in their roles as veterans on campus and enjoy the freedoms and advantages that come with acting responsibly. 

So, it’s just me and Rudy this morning…we have a couple in-home appointments for Rudy and then a list of errands to run so hopefully we’ll be too busy to miss the big kids too much.  🙂 

I think we’ll need to plan some playdates with Rudy’s gal pal Stella since she’s in the same boat with her big sisters off to school…

Thankful, today, for friendships!!

Dr. Dan is a popular guy in AND outside the UCLA community…he even has his own table at Barney’s Beanery in Westwood where a picture of Rudy is proudly displayed (Ha)…even the UCLA facility employees who happened to be seated at Dr. Dan’s table when we stopped in were quite impressed by Rudy’s celebrity!!  (Double Ha)

 Aunt Andi and cousins Mayali & Kyra made a stop in California en route back home to Boston from their summer trip in China!  It’s always a treat for Rudy to see extended family (fun for the rest of us too)…

 We continue to take full advantage of these last two weeks of summer vacation!  Rudy has his next monthly cardiology appointment with Dr. Harake this Friday…will update on his condition then.  Thank you for your continued interest and support!!!  Blessings…

It’s 9am and after a night of observation, Rudy will be discharged sometime before noon today.  As Rolf posted earlier, we had a smooth (albiet early) trip to UCLA yesterday morning, an easy admit into the PCU for pre-op, was in for the bronchoscopy & direct larynoscopy on time and back in the PACU (recovery) in about an hour!  Because of a shortage of beds in the PICU, we hung out in the PACU until a bed opened up at 4pm but Rudy woke up from the anesthesia happy and then took a nice afternoon nap so the time went pretty fast.  Although I secretly hoped they would send us home because of the bed shortage, I was happy to stay and err on the side of being cautious and, as it turned out, we had a great night connecting with old nurse/doctor friends.  Word spread that Rudy was on his way up from recovery and he received a warm welcome fit for a king!  How very blessed we are to have such great care and engaged medical professionals.  I took full advantage of being in the unit and tried to tie up a few loose ends regarding acquisition of a wheelchair and consults with a few of his docs.  All in all, folks around here are amazed at how he has grown and loving how interactive he is now…he is giving quite a few kisses and smiles to everyone who comes in to see him and our overnight stay has been a mutual encouragement I think!  🙂  So we’ll pack up and head home in an hour or two.  Thanks for your prayers!  As Rolf mentioned, Rudy will need a couple of  procedures when it comes time to wean him from the trach but in general there is much to be grateful for in the development of his airways!  Yippy!!

Here it is…August 1…the start of another new month!  Even when one tries to take life one day at a time and stop to savor the moments that make up each day, the days add up so quickly and then “poof” another month flies by.  The milestone of each month for Rudy is a milestone of hope and gratitude and I can’t help but look back at the start of this journey at the time of Rudy’s diagnosis (2 years ago this week!), at the first internet searches we made for “Hypoplastic Left Heart Syndrome” to try to figure out what in the world our little boy had and what we were facing and at the first blog sites we found of little ones well into their fight with HLHS at 18 – 24 months wondering if Rudy would make it that far and…he has.  With all it’s twists and turns, ups and downs and lingering unknowns, we stand before God today profoundly grateful for the past 22 months.  Rudy truly has captured our family’s heart beyond what I allowed myself to dream…I’m still easily overcome by fear but, oh, so thankful.

The past week was full with my sweet family’s return from Alabama, two visits with old friends from out of town and a garage sale the kids and I have been planning for the past month!  Needless to say, Rudy was thrilled with his Dad and big sib’s return home, was pretty smitten by our guests and thought conducting a garage sale is a GREAT way to spend the day!  The common thread for Rudy in all of the above was ATTENTION, ATTENTION, ATTENTION!  My, how he loves to be a part of the action!  🙂  We have just 3 weeks left of our summer vacation and then Rudy is back to long, quiet days with just Mom.  Ha

This week will bring another trip down to UCLA for Rudy’s bronchoscopy.  Rudy and I will head down early Tuesday morning and he will likely be held overnight for observation…if all goes well, we should return home on Wednesday.  This procedure allows Rudy’s ENT, Dr. Shapiro, to take a detailed look at the inside of Rudy’s airways.  She will look for scar tissue and whether or not the cartilage supporting his trachea is strong – crucial to his success weaning off the trach.  We anticipate a good report and pray he doesn’t pick up a nasty bug while in the hospital (his last bout with c-diff was NOT fun!).  So, we’ll certainly have more details to share on Tuesday.

I want to thank everyone for the thoughtful blog comments, emails and cards that we’ve received since my Dad’s passing!  It’s hard to respond to everyone individually but I just want everyone to know how much I appreciate the encouraging words and prayers.  I’m still processing all that I experienced during my visit back to Kansas (some amazing highs and bitter lows) and seeking God for wisdom and understanding as I move forward in grief and in life…your prayers are uplifting and I thank you.

It’s Friday night and Rudy & I are sitting in our quiet house, smiling at each other and enjoying  each other’s quiet company.  It’s so surreal to think it was a week ago tonight that I sat at my Dad’s side after a VERY LONG travel day to get there…although he was out due to the morphine drip and his breathing seemed labored, I was just so relieved that he was comfortable and I was there…the anxious tears I shed all day as I was in transit disappeared, my heart relaxed and I just tried to take it all in.  My mom, brothers, their wives and the Wilson cousins were all there too and we spent Dad’s last night celebrating my folks’ 54th wedding anniversary (which had been the day before) with cake and milk, singing, looking through his scrapbooks and chuckling over some old letters Dad wrote over a half century ago.  My brothers and I spent the night with Dad and I drifted in and out of sleep listening to his breathing…heavy but strong and steady.  We decided the next morning that Dad must have been marathoning to Jesus which made sense because he always was a distance runner.  And then it happened…that Holy Moment when life on earth crosses the threshold into life eternal…we were there, my  brothers and mom and sister-in-law, talking about our breakfast plans when his breathing became shallow and then just stopped…so peaceful.   A peaceful finish for a man who wasn’t always at peace…a man who didn’t find out he was adopted until his mother told him in a fit of anger as an adult; a man who had trouble expressing his feelings, communicating and relating which contributed to a strained marriage for many years; and a man who lived for decades with the disappointment of an unmet dream and yet I noticed a change in Dad the last 10-15 years.  In a season of life when many get even more set in their ways, Dad demonstrated humility and growth and the ability to change as he learned to communicate and share his feelings freely…he began to relax and enjoy life.  A woman from the church told me at his funeral service that when she visited Dad in the hospital early last week, they were joking around and bantering as they always did and at one point she said “How do you feel Dick?” to which he answered “Happy”.  What a gift!  I’m proud of my Dad…and not because of all his athletic accomplishments but because he was a man of quiet character, kindness, respectfulness, discipline, humor, faith and loyalty.  He worked hard, loved his family and honored his commitments…he ran a good race with all its hills and valleys and , in the end, God awarded him with grace in his journey with cancer, peace in his final months of life and happiness in the hours before death.  Oh, that I might have a finish like that too!  Thank you, Dad, for the love you shared with me, Rolf and the children; for laughing at my jokes and for affirming my life choices.  I’m going to miss your big smile and strong hugs, the pinochle challenges and the stops at Dunkin’ Donuts but the greatest gift you gave me was your example!  How grateful I am to God for you!  

 Richard H. Wilson, Sr.   December 29, 1931 – July 17, 2010 

After the whirlwind of planning and executing Dad’s funeral service, I flew back to California early Wednesday morning in time to take Rudy to his appointment with his ENT surgeon at UCLA.  It was of great comfort to spend the day with Rolf and Rudy even if it was within the walls of the UCLA Medical Center…and we were encouraged by our consult with Dr. Shapiro.  Based on the little she could examine in her office, she thought Rudy’s airways are looking healthy…she was encouraged by his growth and color.  She’ll conduct a bronchoscopy on August 3rd which will allow her a closer look at his airways to make sure there isn’t any scar tissue and that the cartilage supporting his trachea is not compromised.  ‘Still not sure if Rudy will wean off the trach before or after his next heart surgery…waiting for details to unfold. 

The big kids are still in Alabama and Rolf joined them yesterday for a little Geyling family reunion…they all return on Monday and life will move forward…slowly getting back to a familiar routine.  I admit that losing Dad does shake my confidence a bit as he and Rudy started their battles for survival at the same time and his fight was a source of great encouragment and inspiration to me as I’ve walked alongside Rudy.  So now we take a minute to catch our breath, regroup and focus our energy on the steps ahead…right foot, left foot, one step at a time!

My Dad’s 21-month battle with brain cancer took a sudden turn for the worse this week and I’m making arrangements to fly home.  We found out last week that his treatment is no longer effective and the cancer is spreading fast so my folks met with home hospice in preparation for when they reached the need for hospice care.  An unexpected fall on Sunday evening led to hemorrhaging of the tumor and paralysis of his left side.  Although the ER doctors doubted he would survive the night,  Dad stabilized by Monday morning and was alert…joking with my nieces and nephews when they came to see him.  It has taken us a few days to work out the details on our end but I’m freed up to go home on Friday and stay through next Tuesday.  Fortunately, the big kids are scheduled to fly to Alabama to visit some of Rolf’s family on Friday and thanks to Rolf and a handful of nurse friends, Rudy’s care will be covered here at home!  Rudy had his monthly cardiology appointment yesterday and his heart status has not changed…he remains stable which was confirmation for my heart that I can leave. 

Of course my prayers are for Dad’s comfort and peace…I’d love to make it in time to hug him and sing for him in person but he began experiencing pain today, as expected in this process, and is now sedated on pain medication.  Although they talked on Monday about sending Dad home with hospice care, the plan now is to keep him at the hospital in Lawrence.  I’m comforted by the fact that my brothers are with my Mom and Dad…by the sweet phone conversations I’ve had with my Dad this week…and so deeply grateful for the family trip we were able to make to Kansas over spring break!!  God has been very gracious to us and His peace fills my heart.  Please pray for that peace to blanket my Dad;  for my Mom, brothers & sister-in-law as they walk these hours/days with my Dad and for my precious family as we’re spread all over this next week.  In times like these I just want to gather all my chicks and circle the wagons and instead I’m sending my big kids to the other coast and leaving my little halfheart behind for 5 days…

I’ve been reminded all week of Philippians 4:4-7…verses we shared at Rudy’s dedication and of deep comfort for me the last 21 months.  Here’s a paraphrase:

“Delight yourself in the Lord, yes, and find your joy in Him.

Be known for your gentleness and never forget the nearness of our God.

And don’t worry – whatever is going to come.

Just tell God every detail and the peace of God that no one understands will come to you.

No, don’t worry.  Just tell Him every detail and His peace will come to you.”

Yesterday’s visit to UCLA for our regular check-in with Rudy’s pulmonologist took us back to that reality with Rudy that you wait and wait and wait to almost a standstill and then when things move, you feel like you’re running out of the gate in a sprint.  Yesterday’s consult was full of great news but I think Rolf and I both left with our heads spinning a bit.  Dr. Pornchai seemed pleased with Rudy’s progress…at 30 lbs 9.4 ounces, he remains in the 90th percentile for weight but has grown in height (32 inches) putting him just under the 50th percentile (up from 20th percentile in April).  Rudy’s still a chunk but at least he’s getting longer and growth in general is an indicator that his lungs and heart are working together. 

Although we won’t know for sure what is going on in his lungs until the heart cath in the fall, the fact that his oxygen sats are baselining a bit higher in the high 70s – low 80s…and even reached into the 90s (!) is another indicator that the lungs and heart are communicating!!!  Bottom line…it’s encouraging eventhough there isn’t alot of specific information yet. 

As a result, Dr. Pornchai recommended we decrease Rudy’s oxygen rate to 1 liter during the day and keep it at 5 liters at night and he reduced the dosage of one of Rudy’s respiratory meds but the most surprising recommendation was to pursue “decannulation” a.k.a. “pull the trach!!!!!”.   The trach has served two purposes…to help make it easier for Rudy to breath and to allow us a way to clear Rudy’s secretions for him.  Although Rudy has become less dependent on the trach for his breathing for a few months now, we’ve needed to suction him pretty regularly up until just a couple of weeks ago…now that the need for suctioning is decreasing, there’s less and less reason to keep the trach.  One would argue that since we are heading into another major surgery, it would be advantageous to keep the trach because it makes it easier to put Rudy on and off the ventilator (and much more comfortable for Rudy as opposed to being intubated).   This is true but the trach is also a potential source of infection that many on his team would like to eliminate before heading into surgery. 

It’s funny…Rolf and I remember feeling pretty devastated when Dr. Rick told us we had reached the point in Rudy’s care where the tracheostomy was necessary and now that we are presented with the recommendation to wean him from it, our first response is “Are you sure you want to do that?”…the trach has gone from something we feared to a safety net.  It is exciting, though.

It won’t happen right away…Dr. Pornchai wants to talk with Rudy’s cardiology team and get a “thumbs up” from them before we proceed…we also need to schedule a “bronchoscopy” to get a good look at the inside of his airways…a procedure we’ll need to schedule with his ENT at UCLA.  And finally, Dr. Pornchai wants to send us to Children’s Hospital Orange County for a sleep test where they will block the trach and observe Rudy overnight.  I imagine it will take time to get all this scheduled but the fact that we’re even talking about going in this direction is amazing.  It feels like all the progress we’ve been reporting in recent weeks is the fruit of this extended wait for the Glenn.

Of course, our visit to UCLA included a quick stop in the ICU to see the docs and nurses on duty…we also had our first batch of “Rudy Rolls” to drop off…we’ll see how helpful they are:

We can’t ever leave that unit without a deep sense of admiration and gratitude for the people who staff it.

Our special day concluded with an extra-special visit with new friends…Megan and her family have been faithful Rudy’s Beat followers since a mutual friend told them about Rudy at the start of his journey.  We have known about them and their commitment to pray for Rudy all these months but yesterday we had the opportunity to meet and what a sweet time it was.  Our mutual admiration and commitment to pray for each other’s family runs deep as Megan is in her own battle for survival after being diagnosed with an inoperable brain tumor.  Watching Megan and Rudy look at each other (both having very expressive eyes) was one of those “holy ground” moments for me.  Please join us in praying for Megan and her family as they navigate their journey with grace and faith.

Life is SO MUCH more than what we see in the here and now…everything about yesterday was a BIG reminder of that!!