More Good News

     More good news!  Sawyer had his hearing tested today and his audiologist says it is "perfect". 

     Some kids with genetic issues like Sawyer have hearing problems and many other issues.  Sawyer's doctor has been ruling out other problem areas.  For today, we can check this one off the list. WooHoo! 

     We are grateful for God's mercy and provision for our boy!

Emma!

DeBause.com has been Sawyer.com for good reason these last several months.  However, today is a good day to shift the focus because it is Emma Marie DeBause's 12th birthday!

Her birthday wish was predictable … clothes and money for more clothes.  She got her wish.

Here are some fun facts about Emma…

She will make you laugh.

Her brother is 12 too for two more weeks.

She eats a lot.

She laughs a lot.

She is remarkably gifted at basketball but insists on playing soccer.

She is God's girl.

She is my girl too.

Happy Birthday Pooh Girl!

Welcomed Relief!

'

     Great news today!  Sawyer went to an orthopedic specialist to get a consult regarding his skeletal dysplasia.  The doctor confirmed the dysplasia.  However, it is not severe and he does not see it limiting Sawyer too much in the future.  He even predicted Sawyer could get as tall as 5'7" to 5'10".

     Our most immediate concern was Sawyer's hips. We have not noticed him limping lately.  However, he has not been very active now that soccer season is over.  The doctor was not troubled by what he saw in the x-ray or as he observed him walking. 

     This specialist will follow up in the next few months, but he was encouraging today.  This is a welcomed relief! Karen and I praise God, the One who knit our boy together.

     Sawyer has continued to do well with his dialysis.  Fewer alarms go off in the night and he has a good routine.  He still fights us regarding every medicine he has to ingest, but I'm glad he is a fighter.

     He has not been feeling very well the last few days.  It is not unusual for him to vomit in the mornings.  We thought it was some of his meds making him nauseas.  However, he has been sick without any meds recently.  Not sure what is going on there.  The doctor is aware.

     I have more to share, but no time to type.  Thank you for your continued prayers.  Although I have not been able to update this blog much in recent weeks, many people continue to reach out and let us know they are praying steadfastly.  Very encouraging!!  Karen and I continue to boldly ask God to heal Sawyer and we are heartened to know others do too.

It Will Happen

     In my last post, I shared that our health insurance company refused to cover Sawyer's genetic testing.  I did not realize until after so many people responded to this post that, in my attempt to communicate disappointment and frustration with our health insurance company, I actually sounded rather hopeless. 

     Karen and I are far from hopeless.  We have full confidence, along with our doctor, Sawyer will get these tests one way or the other.  It may not happen right away, but it will happen.

     Thank you to those who offered to help and intervene on our behalf.  At this point, we are following the lead of our doctor.  She is a force to be reckoned with all by herself.  However, we will not hesitate to ask for help when the time is right. 

     It is very encouraging and reassuring to know that so many people care so much.  Our family has a lot to be grateful for.  Thank you for praying, caring, and fighting this battle with us!

Sawyer Update 11/23/11

     Last week we learned that the insurance company will not pay for the tests needed to determine Sawyer's syndrome.  They also let us know that an appeal to their decision would most likely fall short.  This is frustrating because we felt like we were getting closer to some answers.
     In the long run, this is not helpful to Sawyer and I don’t think it will bring savings to the insurance company.  Sawyer's syndrome, whatever it is, impacts several areas of his body.  Knowing what the syndrome is would help the doctors know what to expect and begin intervention now.  Aren’t we always told its cheaper to maintain something than to neglect it until it breaks down?  This is painfully true in my budget.  It will be true for the insurance company as well.

     Either way, our doctor is appealing the decision and she will do anything she can to get Sawyer the best possible care.  What a blessing to have such an incredible advocate!

     Sawyer seems to be walking better.  His limp is less pronounced.  He will see an orthopedic specialist soon to help determine the best next steps regarding his hips and skeletal dysplasia.  Overall, he has been hanging in there. There is no great drama to report, which is a very good thing!

     The entire family has been a bit cranky lately.  So, we pulled the plug on the TV and the rest of the electronics.  The DeBause family loves our tech toys, but we have found in the past that an occasional sabbatical from this stuff does much good.  It pushes us to refocus on more important  things and the most important thing.

     Life became more peaceful within hours of the announcement to the kids of the no-tech week.  They are playing and working well together.  Two nights ago, the kids were choreographing a dance to their favorite Bison song.  Ben made me promise not to put it on the blog.  Bummer, because it is good!

     Thank you for your continued prayers for Sawyer's healing!

Secret Service on the Soccer Field

     Sawyer has a few teammates who are very protective of him. At one point while he was playing goalie, they went into action faster than the Secret Service covering the President (sorry Adam!).  See the clip below.

Door #3

     Sawyer's skeletal scan revealed that he does have skeletal dysplasia in his hips, fingers and toes.  The dysplasia in the hips is causing an inflammatory response, which is why fluid is building up.

     This has obviously not caught us unaware. We discovered in the hospital something was wrong with his hips and we have always thought his fingers and toes appeared stubby.

     There was no apparent dysplasia in other areas.  Not sure if this will or could progress into other areas of his skeleton.

     Unfortunately, this is more confirmation of RYHNS syndrome. Therefore, there could be many more issues (liver, hearing, thyroid, etc.) around the corner in addition to his eyes, bones and kidney problems. I feel a bit like we are on the game show "Let's Make A Deal" and we keep picking the wrong doors to open. 

     We are resisting the urge to concern ourselves with the other doors and just wrestle with and consider the ones that have already been opened. Today's troubles are more than enough to contend with. 

     Sawyer has been looking forward to his soccer game all week.  Today is trophy day!  He can barely walk this morning, but nothing will stop him from stepping on to that field.  We are putting his uniform on now.

Inconclusive

     We are grateful that Sawyer is home and resting well from his procedure this morning to remove fluid from his hip.

     Sawyer is a tough little guy. He feared going back to CHKD, but weathered it well. He got sick hours after the procedure (no gross details), but it was expected with the anesthesia that was used.

     Unfortunately, the initial results from the test on the fluid were inconclusive. We may be facing more tests next week.

     It is possible that he has a form of synovitis that is beginning to clear up. Infection has not been ruled out. Also, it could be an orthopedic issue stemming from his genetic syndrome.

     We are hoping and praying that it is synovitis working itself out of his system. The other two possibilities would not be good. Not that synovitis is a good thing, but in comparison, it is.

     We will share more info as soon as we get it. Thank you all for your prayers! We know God is with us. This is more than evident. Even Sawyer was reassured by His presence today. As he was waking up from the anesthesia, we heard him whisper, "Thank you Gawd."

New Issue, Procedure Tomorrow

Sawyer has been limping  for a while.  However, over the last few days, he has been struggling to walk when he awakes in the morning and the limping is more pronounced.

Because of all the other issues, his doctor intended to give Sawyer a full skeletal scan.  So, we went ahead and scheduled it today considering the trouble he has experienced these past few days.

In addition to the skeletal scan (full body x-ray).  Blood work and an ultrasound was performed.  The ultrasound revealed some fluid in his hip.  It may be an infection.  However, they are going to do a procedure on him early tomorrow morning to remove the fluid.

We would greatly appreciate your specific prayers for this issue as you continue to pray for Sawyer's complete healing.  Not sure what this new thing is, but we trust we will have answers tomorrow.  

We cherish your prayers.  I am sorry that I have not been able to update the blog in recent days.  Life has been in overdrive [understated] and there has been no time.  However, I know many of you continue to pray for him daily.  We have been greatly comforted and strengthened by your prayer.  Thank you!

If you see these kids...

... please give them free candy.

Closer To A Diagnosis

     Yesterday, we had an important meeting with Sawyer's kidney doctor to discuss the results from his genetic testing. 

     First, let me reiterate how grateful we are for the medical team taking care of Sawyer.  Our family has been so blessed by their diligence, patience (especially in long meetings with all of our questions), competence and great  compassion.  Yesterday's meeting was another expression of this blessing.

     Our meeting brought some clarity regarding Sawyer's health issues.  However, it also left us with a few more  questions and, unfortunately, more concerns.

      As I shared in a recent post, Sawyer has a retinal dystrophy that is causing him severe myopia and night blindness.  The doctors have suspected for some time that Sawyer's End Stage Kidney Disease (ESKD) and retinal dystrophy could be related to a genetic issue.  The results from the genetic testing affirm this theory.

     The results show that Sawyer has a chromosome abnormality in an area that impacts kidney and eye function.  People with a rare syndrome called RHYNS syndrome have this same abnormality.  So, another genetic test will be used to confirm (or rule out) a diagnosis of RYHNS syndrome.

     Within this syndrome (and other syndromes), the kidney disease is due to a genetic disorder called nephronophthisis or medullary cystic kidney disease.  Recent ultrasound tests showed that Sawyer's kidneys are shriveling up and forming cysts, which is indicative of nephronophthisis.

     Unfortunately, people with RYHNS syndrome also develop more health issues in addition to ESKD and retinal dystrophy.  If Sawyer has RHYNS, he could also develop liver fibrosis, hypopituitarism and skeletal dysplasia.  Sawyer will go through more testing over the next several weeks to determine if these other issues are developing in him.  

     The news is disheartening, but there is much we do not know.  Therefore, Karen and I are working hard to not worry about tomorrow's battles and only deal with what God has for us today. 

     I apologize for not updating the blog over the last few days.  I know a lot of folks check-in daily so they will know how to pray.  We are grateful for and cherish every prayer.  Also, we need your prayers, especially Sawyer.

     Sawyer has grown very tired of dealing with his condition.  He hates that he can not do what other kids do and eat what other kids eat.  He is sick of taking all of the medicines and refuses them every time.   Mix his frustrations with doses of steroids and you have a battle royale.

     Truth is, like Sawyer,  we are all a little sick and tired.  However, we are hanging on and hanging on is all we really have to do.

     Thanks again for your prayers and support!  We will continue to keep you in the loop as we get more info.

Caught Off Guard

Today's update:

     Sawyer has been slow moving today.  He fell asleep for the night in his mother's arms at 7PM.  We miss our hard charging boy.

     He has been walking with a pronounced limp for several weeks.  Of course, it looks even worse after he's been running around.

     The limp is probably related to the issue with his bones.  The extra phosphate in people with kidney failure pulls calcium from their bones. He is on a prescription to help remedy this problem.  Time will tell if it works.

Caught Off Guard:

     Saturday I took the boys to the ODU football game. We usually make it to one game a year and it is a big event for us.  Sawyer usually goes, but he was not up to it.


Ben and Will
enjoying ODU Football!



      After the game, the boys and I had dinner at our favorite steak house. After we  finished our first basket of rolls,  I asked them to share their thoughts about Sawyer.  I expected a bit of a gripe-fest because Sawyer has been unbearable and especially mean to them ever since he started taking steroids .

     I was blown away by their answers.  As soon as I asked and  without hesitation, Will said, "He's incredible" and Ben said "He's amazing, so strong". 

     Because their answers caught me off guard, I hesitated and then pressed them by saying, "guys, he's been so mean to you.  I'm surprised by your answers."  Then I gave them another chance to gripe by saying,   "It's o.k. to share your frustrations".  Ben responded, "Dad, he's been through so much... we understand."  Will nodded quickly and definitively in agreement.

     It was a proud moment for this dad. 

Raw and Intense

Today's update 10/11/2011:
    
     Sawyer experienced a lot of pain during his dialysis last night and this morning.  He bounced back very well as the day went on and we are praying for a better night tonight.

Video from the hospital:
    
    I was unaware that we accidently recorded some candid video of  Sawyer in the hospital during one of his steroid fits. This video is raw and intense, but  it will give you a sense of what we have been dealing with since he started taking the steroids.

Pig Toes and Poor Vision

     Many are aware of Sawyer's kidney failure, but most do not know about his chronic eye issue.  

     In 2009, Karen and I observed Sawyer struggling with symptoms of blindness  in low light situations. A low vision specialist was able to quickly confirm the night blindness and severe myopia (poor vision).  She suspected Sawyer's condition to be a rare eye disorder called "Retinitis Pigmentosa". 

 "Pig toes… What?!?"

     In 2010, we visited Duke University for specialized testing. Although the test was definitive, the diagnosis was not.   The Duke eye specialist said Saywer's eyes had characteristics of Leber's congenital amaurosis, but this usually presents itself at birth or within the first few months after birth.  Therefore, she said in general terms that Sawyer had a cone-rod disorder or a retinal dystrophy.

     At this point, we do not know how Sawyer's condition will progress.  Everything I read indicates that these disorders get progressively worse and typically end in blindness, but we really do not know. 

     We have considered doctors from all over the country.  However, we found one of the best eye specialist to be here in Hampton Roads. 

     All of the other specialists had warned us that glasses would not significantly help Sawyer's vision, but this doctor gave us a good prescription and encouraged us to get the glasses. 

     We wasted no time getting those glasses and they made a huge difference!  Sawyer has good vision with glasses except in low light situations where  he still has night blindness.

     This doctor has also been working hard to determine if there is a connection between Sawyer's rare eye disease and his rare kidney disease.   It appears his suspicions will turn out to be true.  On Friday, our kidney doctor got back the results from the genetic testing.  We are still processing the all of this information, but it does indeed appear to be a connection. 

     We will share more soon, but it looks like some of the puzzle pieces are starting to come together.  We have a lot to consider and understand.  Again, I will share more as soon as I can.

     Thank you for your continued prayer and concern for Sawyer and our family.  So many of you have been walking this out with us and we are grateful!

Sawyer Update 10/7/2011

     Today Sawyer went through several rounds of tests including ultrasound to further confirm what the doctors suspected. 


     Sawyer's dehydration is the source of his low blood pressure, which is causing the temporary blindness, muscle spasms, dizziness, etc. Also, one of his medications is most likely exasperating the symptoms.


     The muscle spasms are what inflicts the pain he is struggling through. Sawyer has had a few spasms today, but nothing like the last few days.


     Most would think… give Sawyer fluids, he gets re-hydrated, blood pressure levels out and he is back in business. However, the kidneys help regulate blood pressure and Sawyer's kidneys are not functioning. So, regulating blood pressure is not so simple.


     We have made more adjustments to his dialysis treatments. This will help get him balanced with fluids and blood pressure. Also, he has been taken off all of his blood pressure medicines. This will get us there faster as well.


     Thank you for all of your prayers. It is a huge blessing to know so many people care!

Partying Thru The Pain

     We are back on the roller coaster again, but hoping the ride will be short this time.   So, buckle up for the update…

     Sawyer continues with the belly pain, but we have a few more issues to work through.

     Today he fell when he stood up for the first time. We caught him and then he had a horrible episode of the "belly" pain. So bad, he could not cry out because he was struggling to breath through it. Very hard to watch, harder for him to go through.  It lasted 10 minutes and it wore him out as he slept for 3 hours after it ended.

     He continued to have these episodes throughout the morning.  Then, the one time he tried to walk, he walked across the room and stopped.  A puzzled look  appeared on his face, he wobbled and started to fall.  We caught him again.

     This time it was not pain related.  He said his eyes were "freaky" and said he was "dizzy".  This continued for about ten minutes.

     The next issue was the most "freaky" (to borrow a Sawyerism).  He lost his sight for a few seconds when he sat up.  We suspected that this happened before, but he clearly communicated to us this time.  He said he could not see and everything was dark.

     After much consultation with the medical team, the loss of sight was caused by orthostatic hypertension.  His blood pressure is actually too low today.  So, they feel confident this is the cause of his momentary blindness.

Sawyer's blood pressure has been low since yesterday and they also suspect he is dehydrated.  So, today we are holding off on all BP meds, giving him some salty foods (Doritos are his preferred chips) and releasing him into a Slurpee binge.  

     Basically, we are partying through the pain. So, go get yourself a Slurpee today in honor of Sawyer and say a prayer for him.  Thanks for caring! 

Update 10/05/2011

     Sawyer's episodes of pain continued throughout the night and became even more intense this morning.  Each episode lasts 10 to 15 minutes and 5 of those minutes are excruciating for him.

     We have been in contact with the kidney clinic throughout the day.  Sawyer's doctor suspects that one of his new medicines is causing the issue.  We have stopped giving him this med and will try a new one soon.  Also, he will have more tests done on Friday morning including an ultrasound.  Hopefully, the pain will have subsided by that time.

     Although the pain is intense, Sawyer does not appear to be in any danger and we are grateful that we do not have to return to the hospital. We trust his doctor's discernment as she and the rest of the renal team are first class and take great care of Sawyer.  We continue to be grateful for God's provision through them. 

New Episode of Pain... UPDATED

   Sawyer has been experiencing a new episode of pain in his sides over the last few days.  Today it intensified.  He is at CHKD right now being examined.  Thank you for praying!

UPDATE: The examination, along with the x-rays, revealed nothing. That's good news. However, this pain is not a constant. It comes and goes... and it was gone in the doctors office.

      When he experiences it, it's intense. So, at this point, we will just ride this out and see what happens.

      I know a bunch of you were praying today. Thanks for praying and reaching out.

Big Pig Smasher

Sawyer just received this huge Angry Bird from his eye doctor. Wow!  Now he can smash some pigs, a few brothers,  and the mountain where the biggest pig sits.  He loves it!

Update 09/30/11

     Good news today…

     The heparin worked last night. Sawyer had no clogs in his catheter and no itching.   He will remain on a heparin regimen for a couple of days.

     Sawyer is now down to two blood pressure medicines!  His blood pressure has improved so much that he can do away with his patch.  We are so grateful!

     Sawyer still takes many different types of medicines and recently he has refused to take them.  It has been a huge fight morning and night to get him to cooperate.  One day it took two hours to get his meds into him.

     It's good that he is a fighter.  He needs to be for this challenge and all that lies ahead.  However, now it takes much more than a spoonful of sugar to make the medicine go down. 

Fibrin

     Last night Sawyer's dialysis machine sounded a "check line" alarm at 3am.  It's not an unusual event.  Typically, this alarm chirps when Sawyer crimps the line attached to his catheter as he tosses and turns through the night. The quick fix...  roll him over, straighten the line and he's good to go.  However, we had no success with this last night.

    
     Everything externally was clear.  So something inside of him was impeding the flow of solution .  It appears that the catheter was clogged with fibrin (a fibrous, protein substance). 

     It was a troublesome moment as he was full of solution and we were not sure if we could get the catheter to drain.  Karen and I both feared another trip to the hospital.  I know we are a little sensitive, but the last time  his catheter clogged, Sawyer ended up back in surgery.

     Eventually, he drained and we did not need to go to the hospital today.  The doctor sent us heparin to inject into his dialysis bags.  Heparin breaks down blood clots and fibrin is a substance that clots blood.  So, this should work well.

     Sawyer gets itchy from head to toe when he has heparin in his system.  I hope he can get through this without the itch.  So please pray for no clogs and no itching tonight.

     Update: Sawyer just went through his first of twelve dialysis cycles.  It was slow, but it worked!  We trust the next nine hours of dialysis will go well and we will all sleep good!

     Thank you for your continued prayer and concern.

Birthday Video



Sawyer and his friends loved watching the video!

     Sawyer received an incredible surprise when many of his friends got together to send him special birthday wishes.   There are two videos.  Only one would upload.  So, I'll try to post the other tommorrow.

     These videos and all of the photography was done by Gloria Duarte. Gloria is a remarkable freelance photographer who spent countless hours putting this project together. Thank you Gloria!

Gloria Duarte:
ghocutt@gmail.com

    

7000

     There are seven thousand children in the United States with End Stage Kidney Disease.  Sawyer is one of the seven thousand. 

     It would be a miracle for Sawyer's kidney's to function again.  As the doctor says, "dead kidneys do not come back to life".  So, we are asking God for a miracle... please bring Sawyer's kidney's back to life. 

     Sawyer is no more deserving of a miracle than the other 6,999 children.  However, we are boldly asking God for His intervention.  He is our only hope.  If He rejuvinates Sawyer's kidney's, we will praise Him.  If He does not, we will praise.  We trust Him with the results.

     There is a huge movement of prayer for Sawyer.  Thank you for lifting him up!  Karen and I are very encouraged by your prayers and support!  

Loving My Neighbor

      My neighbor recently had surgery.  So, being the loving and considerate neighbor that I am, I had a custom ice cream cake made for her from Greenbrier Cold Stone Creamery. 

     Oh, I almost forgot to mention, she and her husband happen to be huge Dallas Cowboys fans...

Hail to the Redskins!

Keep Your Eye On Five

     Today was Sawyer's first soccer game of the year.  He may have been the slowest on the field, but he worked the hardest to get out there.  So good to see him playing! 

Keep your eye on number five.

     Sawyer's team mates really looked after him and showed him a lot of love.  One of many acts of kindness from these incredible kids in the video below.

Good Report!!

Sawyer sitting in one of his favorite birthday gifts.

     We believe the gas pocket, which was causing excruciating pain as it pressed into Sawyer's diaphragm, is GONE.  For the last two days, he has been pain free! 

     This is a huge blessing and relief.   The nagging, sharp pain was taking its toll.  Now, Sawyer is much more active, playful, and regaining his sense of humor.   Love it!

     Here's another good report…   This week, he has had successful dialysis treatments, which really helps with his blood pressure and so much more.  His blood pressure is trending down so much that it is hovering just above a normal range! 

     The dialysis has been going so well that he has been able to reduce the amount of time he is tethered to the machine from 12 hours a day to 10.  Two hours makes a huge difference!

     Although it was a real bummer to have the doctors give up on his kidneys this week, overall, it's been a great week.  Sawyer even played a little soccer yesterday. 

     Karen and I are so grateful for your continued prayers and support.  We know God is listening.  We also trust that He is using Sawyer's kidney failure for His glory and Sawyer's good (and our good too).

Blown Away!



     We are four days past Sawyer's Birthday and we are still opening up stacks of cards and gifts from people all over the country and here in Hampton Roads.  We do not even know 90% of these kind people.

Sawyer and "round one" of the outpouring of cards and gifts

     I don’t have the words to express how grateful and encouraged we are to get a glimpse of how many people are praying for and care about Sawyer. It truly is awesome.

     We are blown away by your love and support.  You have boosted the very soul of my boy and for that I am even more grateful.  Thank you!

Peace

We can feel you move

and cannot stay the same

the winds are blowing strong

God of heaven come

breathe peace

breathe your peace on us

so we might breathe you deep

breathe peace

An excerpt from the song PEACE by the ROBBIE SEAY BAND.  For me, this song gets right to it.

Not so good news...

       We paid a visit to the kidney clinic today. Here's the latest…

     Let's start with the good news. Sawyer is beginning to stabilize. His dialysis continues to improve and it's reaching the doctor's goals. His blood pressure is trending in a good direction and other critical stats (potassium, phosphorus levels, etc.) are looking better as well.

     We are hoping this stabilization ushers in the "new normal" soon. A little less drama would be a good thing. There have been a lot of ups and downs, twists and turns over the last few weeks. We only like rollercoasters at amusement parks. So, we welcome some semblance of routine.

     Now the not so good news… Sawyer's kidney function continues to deteriorate. His kidneys, at best, are functioning at 5%.  Sawyer's doctor has given up on his kidneys and  wants to stop treating them.  She believes continued treatment could bring more harm to Sawyer than good. So, we gave her permission to end treatment.

     This was no surprise to the doctor. She has been preparing us for this outcome since day one.

     Obviously, we are disappointed.  We were hoping for a better result and we still do.   Stopping treatment, or finding a new one, matters little to God if He chooses to intervene and revitalize these kidneys.  So, we will continue to pray hard and trust Him regardless of the outcome.

     Now that Sawyer is stabilizing and treatment of his kidneys is coming to an end, the doctor can turn her attention more to kidney transplantation. Karen and I begin the testing this week to determine if we will be the donors. We are the only donors that the doctors will consider at this time.  The qualification process will take approximately four months.
 
     I know many of you feel like you are on the rollercoaster with us.   Thank you for hanging in there with your support and prayer.  God is using you and we are grateful.

Big Day Part One

There is much to share regarding Sawyer's Birthday Celebration.  So, here is Part One of the Big Day.

     Although Sawyer had a BLAST on his birthday, it started rough.  He had a pain filled morning and he stayed in bed for most of the day because he was nauseated. Yet, he was determinded to get his birthday groove on! He climbed out of bed around 2PM and was ready to party by 3PM.  

Many friends came to celebrate.  Sawyer was showered with gifts and love.  

     Sawyer said his favorite part of the party was smashing the Angry Birds Pinata.