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!