The moment when...

... you find out if you are on the naughty or nice list.





Santa's 2013 Declaration Video for Sawyer

All hail the B.D.P.!

Today is Emma's 14th Birthday. All hail the Birthday Princess!!  

Emma at her birthday lunch with dad.

Kids go cra cra cra cra cra cra crazy.

Cool Scoop

Found this old commercial.  

Recognize anyone?

Pop goes the...

     Sawyer's surgery was successful today, but the doctor made a surprising discovery during the procedure.  Turns out, Sawyer's ureter had partially popped out from his bladder.  There was not enough of his ureter in the bladder for the bladder muscle to properly contract around it.  Therefore, urine easily back-flowed into the kidney causing the infections.

     The doctor believes Sawyer's ureter popped out because he is a "chronic holder". Good thing Sawyer has been going through Pee Pee Boot Camp.  If he does not maximize his potty breaks, he will have more serious issues in the future. 

     Although the ureter could not be placed into its proper position, the Deflux procedure corrected the back-flow (re-flux).  Sawyer is home and resting well.  He came home with a foley catheter.  So, he will stay put until we remove it tomorrow.

     Thank you for all of the prayers. Although this was a minor procedure, we take none of them for granted.  We are grateful for the excellent team at CHKD and great friends and family. 

Deflux

     
     After months of Pee Pee Boot Camp, Sawyer has his Deflux procedure tomorrow (11/5) at CHKD.  Hopefully, this will help his ureter fully contract to stop the back-flow (reflux) of urine going into his kidney and causing infection.  Infection is deadly to a transplanted kidney.  So, tomorrow is necessary.

     We would appreciate all prayers for Sawyer and the success of the surgery.  It's been nice to get a break from the hospital, but we are grateful for the caring professionals at CHKD.

Sawyer had an important conversation with me while watching the game.  He was unfazed, as usual, by my passion for fair play.  At least, that's what I'd like to call it. 

Seven!

     Sawyer turns seven today.  He has been counting down the days to seven ever since he turned six… because that is how he rolls.

     He went to bed early, couldn't sleep with excitement and woke up early this morning.  Happy Birthday to my fun-loving, tough guy!

Don't look!

Sawyer blew into my home office yesterday.  I quickly told him he would not get his birthday present if he sees it in my office.  Of course, I just did this to torture him as his birthday present was never in my office.

     It's Karen's tradition to make a placemat for each child on their birthday.  Sawyer is all about Pac Man right now.

 

Up early and ready!

 

Two Years Ago

Two Years ago today Sawyer was in the ICU shortly after we learned his kidneys had failed.   Here he is  today...

 

 



As One Adventure Ends...

Toby and Scott
(Year One)

    Today my partner and I sold our Cold Stone Creamery in Greenbrier. It is hard to believe our ten year adventure of bringing the Ultimate Ice Cream Experience has come to an end. 



     I will miss the over crowding of my freezer doors at home from "Everybody" size cartons of our favorite Signature Creations.  But, what I will miss most is our people. 

Matt, Toby, Jerika & Andre (Store Manager & Great Friend)

      At one point, we owned four stores, which has given us the privilege of working with hundreds of incredible crew members, managers and vendors.  I am so grateful for their hard work and sacrifices.  They took great care of our guests, each other, my family and me.  I have learned and gained so much from them that words will fall way short here.

First Shift (2004)

Last Shift (2013)

     I thank God for my partner Scott.  Like any good partnership, our strengths and weakness always offset each other.  This has been one of the greatest assets of our business.  I know Scott is known as the "silent partner", but this is a misconception.  Few will ever know the weight he carried and the wisdom he poured out to help us navigate through the valleys and reach the mountain tops.  Scott, you are a great friend.  I love you brother and I trust God is not finished with us yet.

     I thank God I got to be a part of this adventure.  I have come to know Him better and trust Him more as a result.  We were profitable during the Great Recession, had award winning stores and the sales at our Greenbrier store always trumped all others in our region.  But, this is not why my faith was strengthened. 

      We suffered many defeats along the way.  Pure defeats, not just setbacks.  It was during these moments- the times when our backs were pressed suffocatingly hard against the wall, the occasions when the hits stung so deeply that you went numb and the losses were so great that they will never be regained- these are the moments that galvanized my faith in God Almighty. [Who knew there was so much drama selling ice cream?!?]

Passing the spade to the new owner.  Sanjay! 

     As one adventure ends, another will begin.  Looking forward to the next adventure, but I will be forever grateful for this one.

REASON #18

WARNING:  EXPLICIT PDL* CONTENT.  Read at your own risk.

 

 

You have captured my heart,

    my treasure, my bride.

You hold it hostage with one 

 glance of your eyes...

          Song of Solomon 4:9

 

    My wife is beautiful from head to toe...inside and out.  However, I can hardly pull myself away from her eyes.  They captivate me.  I gaze into her eyes and never tire. 

     Today marks 18 years of marriage to Karen (or 225 months of dating) and I'm still held hostage by her eyes. 

 

      Every year I update the following list.  So here it is with the it's newest addition-- #18. 

Reasons Why I Love Karen

(No Particular Order)

By Toby DeBause (Karen’s Husband)

1. She desires and seeks after God.

2. What you see is what you get. Genuine. No pretense.
3. Her integrity can never be disputed.
4. She is an incredible mother.

5. She has a great ear and loves to use it.
6. She snores only on occasion.

7. She never gives up.
8. I know she loves me
9. She knows great coffee.
10. I trust her completely

11. I’d be lost without her.
12. She never gets mad at me when I ask for help finding my keys.

13. She is my best friend.

14. She inspires me.
15. She is beautiful
16. She goes where He leads.

17. She gives all for the ones she loves.

18. Her eyes.

Year 14 Video. 
Hit the full screen button after it starts or buy reading glasses.


*Public Declaration of Love (PDL)

Clear Direction

    We met with a new doctor this week to address Sawyer's most recent issues. (For a better explanation of the new issues, go here.) 

The short of it is that Sawyer has reflux in his ureter allowing urine to back flow into his transplanted kidney.  This caused two episodes of infection in his transplanted kidney.  These episodes jeopardize his kidney. Not good… at all.

     The doctor, a pediatric urologist, scheduled Sawyer for endoscopic surgery (outpatient) in September. In  the surgery, she will inject Deflux into the opening of Sawyer's ureter.  Deflux is a bulking agent that will help Sawyer's ureter stay closed when his bladder is contracted.

     We prayed for wisdom and clear direction.  Our prayers were answered.  The urologist did not even give us the option of the more invasive surgery.  We are grateful and relieved. Sawyer is being spared from a lot more pain and suffering.  We wish they did not have to tamper with any part of the transplant, but some tampering is better than a lot. 

     In the meantime, Sawyer's Pee-Pee Boot Camp has to be extended and intensified.  This will help with his bladder abnormalities.  The doctor needs to see more progress before she will do the surgery in September.  We bought him a watch that sounds an alarm every two hours reminding him to start "the drill".  Pray the little soldier cooperates.  

Homeschooling means...

taking a test on the backside
 of a laundry basket.

Buckling up.

     It appears Sawyer needs to strap on his Superman belt again as another battle (or two) lies ahead. This morning's procedure at CHKD showed that Sawyer has three new issues. 

     First, Sawyer does have reflux in his ureter which means urine is back-flowing into his kidney.  This would be the obvious source of his kidney infections.  Kidney infections will damage his transplanted kidney.  So, Sawyer will need to have the reflux corrected soon.

     There are two options in treating the reflux.  Surgical re-implantation of the ureter to his bladder or an endoscopic injection of a bulking agent into his ureter. 

     Sawyer's kidney doctor has been impressed by the results of the endoscopic injections.  We absolutely do not want Sawyer to have to suffer through another surgery.  However, surgical re-implantation is the most definitive method.  We have a lot to learn and discuss before moving forward with any option.  We will be consulting with a urologist who has experience with transplant patients soon.

     The other two issues that surfaced today were Sawyer's bladder showing some abnormalities and Sawyer not voiding enough urine.  His kidney doctor did not show immediate concern regarding the abnormalities because they may be caused by the other issue of not voiding enough urine.  The doctor thinks Sawyer is a "chronic holder".  So, for the next 30 days, Sawyer will need to go through Pee-Pee Boot Camp!  I'll spare you the details of Pee-Pee Boot Camp, but knowing Sawyer, Karen and I will have to buckle our superbelts too.

     Thank you for the prayers today.  Sawyer responded well to the sedation drug this morning, but it was still a very uncomfortable procedure.  It hurt to watch.  When I saw the catheter tube, I immediately asked, "that's not the tube you are using, is it?"  Unfortunately, it was. Sawyer is one tough kid… even without the Superman belt!

Bladder up!

     Sawyer has a procedure tomorrow at CHKD. They are doing a test that will push dye through a catheter in order to fill his bladder. This test will help determine whether or not his transplanted ureter from the kidney is functioning properly at the point where it is attached to his bladder.

     Since Sawyer's kidney transplant, he has been hospitalized twice with kidney infections.  His doctor suspects there may be a back-flow in the ureter that is causing the infections.  We hope they find no issues and that Sawyer has no more kidney infections.

     Sawyer is anxious tonight about the procedure. Please pray that he will experience a great measure of peace  and for good results tomorrow. 

     Sawyer in a private meeting with Mike Griffin, former New York Yankee's pitcher, and Trayvon Robinson, outfielder (LF) for the Norfolk Tides.  Hours after their meeting, Trayvon hit the game winning home run.    

New Life Day!

     I begged God to not let it happen.  Every day and all through the day since we first learned Sawyer was on the path to kidney transplantation, I prayed fervently to the Lord asking for His intervention and healing for my boy so he would not have to go through the surgery.

     The night before surgery was particularly hard as feelings of desperation took over.  In tears and prostrate on the bathroom floor, I cried out to God asking him to spare Karen and Sawyer from what would take place within hours.  I would do anything short of dishonoring Him to spare them.  However, the reality was setting in that there was nothing more to do except to continue trusting God in this dark place.

     Today is the one year anniversary of Sawyer's kidney transplant…. New Life Day!  Although my prayers were not answered the way I wanted, there is no doubt that God heard our cries.  He has watched over us and He has helped us. 

Getting another bucket of love from CHKD today

     This posting could become a book if we shared all the times we have recognized His intervention in our lives since this journey began.  No book writing today, but I will say that God, on most occasions,  has revealed Himself to us through the love, kindness, mercy, provision and support of others.

     Karen and I have been blown away by God working through the hearts of so many people… family, friends and even people we have never met.  They have fed us, cleaned our home, sent hundreds of cards and letters, worked in our yard (please come again soon), cried with us, helped us to make decisions, prayed for us and with us and even encouraged thousands (literally) of others across the world to pray, given many gifts including financial gifts, cared for our children… this list could go on and on.  We even had over a dozen people offer to donate their kidney to Sawyer. 

     As much as I tried to pray us out of suffering, God in His infinite wisdom allowed it to happen, but He did not abandon us in it.  We cried out to Him and He answered.

     Sawyer has a long road ahead as we navigate through his undiagnosed genetic syndrome.  However, we are grateful to reach this mile marker today.  Thank you for standing with us and we cherish your prayers.

1 I lift up my eyes to the mountains—
     where does my help come from?
2 My help comes from the Lord,
     the Maker of heaven and earth.
                                       Psalm 121:1-2

declaration

     Sawyer had to go to CHKD today because he spiked a fever.  The tests showed his kidney is fine, but his white blood cell count is low. He most likely has a virus. This is definitely the [much] lesser of the two evils and the good news is he does not have to be admitted into the hospital.

      Sawyer gives a lot of blood samples.His demeanor is much better now when the blood is drawn because his steroid dose has been dramatically reduced.  Today he kept an exceptionally brave face while they were drawing the blood.   

     When he got home from the hospital he showed me his band-aid and said, "Dad, I didn't cry.  I didn't even need juice."  There was a long pause.  I thought he was done.  Then he said in a matter-of-fact tone, "God helped me.  God is the best."  

     Sawyer does not make declarations like this very often.  So, it caught me off guard.  We are grateful Sawyer recognized God's grace and mercy in that moment. 

Self Portrait

     

     Sawyer placed this picture on my desk today.  I thought it was a picture of an alien monkey.  Later on, he dropped by my office to make sure I got the picture and explained that it was a self portrait.  He pointed out his g-tube , belly button, and scar from his transplant.  

  I'm grateful for the explanation!

 

Sawyer Update 01/15/13

Sawyer lost his first tooth in December. 

     Sawyer's new (40+ yr old) kidney is still performing well and staying healthy.  He was in the hospital for a few days in November because of a suspected staph infection, but other than that, he gets a good break between kidney clinic visits.

     He has been bothered lately with  pain issues especially in his hips, legs and feet.  Part of his genetic syndrome has impacted his bones with mild dysplasia.  One specialist suspects arthritis, probably triggered by the dysplasia.  Sawyer will have an MRI later this month to get more answers.  He has also started some  physical therapy.

     Sawyer's genetic syndrome is still undiagnosed.   All of the testing (and it was a lot) has come up short. Sawyer has literally become a poster child for kids with difficult diagnoses of genetic syndromes.

     One of his geneticists has found a new track to explore.  He knew of a group in France that could possibly help, but the distance creates several insurmountable hurdles.  He brought Sawyer's condition to the attention of a group at Duke University.  They have now invited Sawyer to be a part of their research.

     Duke is investigating the possibilities that Sawyer's geneticist has been considering.  If this becomes another dead end, Duke will do full genome testing.  All of this will happen without us incurring any of the costs because this is part of their research program (Woohoo!!).  It would be great to get some answers to what has plagued Sawyer, especially if it will help him in the future. 

Now that Sawyer has a functioning kidney,
 he's starting to grow again.

     Sawyer is a tough little guy.  We know he struggles more than what he communicates to us.  In the last few weeks, he has had a constant headache. We thought it was related to his blood pressure  because it has been creeping up again.  An additional medicine was prescribed, which helped with the pressure, but not the headache.  So, the docs are currently working to figure this one out.

     Thank you for the continued prayers and encouragement.  So many people still inquire and reach out to us to let us know they are praying.  We are so grateful!