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!

My Right Hand

 Today is Ben's 11th birthday! 

     The name Benjamin means "son of my right hand".  It's obvious that God knew Ben's name before time began because this is the perfect name for Ben. 

     Ben is my "go-to" guy, my "right hand" man.  Regardless of the project before me, Ben is always ready to help.  Ben will get up before dawn to start a job and not stop until the job is finished even if it continues well into the night.  He is the first one to volunteer to help others on a project.  Friends and family recruit Ben for help all of the time because they know he gets the job done!

     Ben loves God, he is a loyal friend, and has a great sense of humor.   Our greatest strength is often our greatest weakness.  So, Ben's humor often manifests itself in the form of teasing, which sends him to bed first on many nights.

     I love Ben and I'm so grateful he is my son… my right hand! Happy Birthday Ben!!

Round Two

     Last week, Sawyer finished round two of his IV therapy at CHKD to help fight his newest challenger,  the BK Virus.  Each therapy session lasts about 7 hours, but Sawyer tolerated it much better this time.

     The good news is that the first round of therapy landed a few punches on the virus.  The levels of the virus in his system are reducing.  It's not a knock out, but we are in this fight!

     The not-so-good news is that the virus has made its way into Sawyer's blood.  Although we were hoping it would not, our doctor was not surprised given the high level of the virus in his urine.

     Thanks for the continued prayer!   This puts you ringside for the knock out of BK in the near future.

    Round One

 

Sawyer's Wish

     A couple of months ago,  two volunteers from  the Make A Wish Foundation of VA, came by to interview Sawyer.  After asking him many questions about his favorite things, they ended their interview by asking him for his wish.  Sawyer responded,

"I want to have pizza with Mickey at Donald's house."

     Sawyer is getting his wish!  Make A Wish is sending Sawyer to Florida to have pizza with Mickey! They are also allowing the WHOLE family to tag along and spend a week at Make A Wish Village with passes to all of the Disney Parks, Sea World, and Universal Orlando Resort Park!!   This is an ALL expense paid trip by Make A Wish!!!

     Sawyer was giddy when he found out that his wish would be granted.  The two volunteers who interviewed him, David and Katie, recently came by to celebrate Sawyer and his wish.  They brought his favorite cake and snacks (Doritos and chocolate milk… of course!).

     It was the coolest party.  David and Katie shared all of the details regarding the upcoming trip, especially the reservation for a meal with Mickey. They also brought many gifts for Sawyer including toys and games for the plane trip and a Make A Wish t-shirt.  Sawyer slept in the t-shirt that night and it's been one of his favorites since that day. 

     We have been blown away by the thought of this incredible blessing.  It's such a big deal for our family that  I don’t think we will believe it is really happening until we get there.  Wow!

http://www.wish.org/

http://www.va.wish.org/