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.
10 comments:
Sawyer, you go my little buddy! I love you with all my heart and so very proud of you!
GO SAWYER!!!!! We continue to pray for your family! You all are such a testimony to God's faithfulness. Well done! Praying that you rest in His arms and trust Him with every second.
Go get your well deserved trophy!!! We can not wait to see pics. God bless you and your family!
The Frizzell
Gates, NC
awww . . . Go Sawyer! :) Love it!
Covering you all in prayer - may God's strength be evident and overwhelming amidst your weakness! May His grace and mercy be upon you today . . . and tomorrow . . . and every day thereafter. May your heart be filled with hope and joy - to overflowing - even in the midst of the trials and dark times you face.
You guys truly are beacons of light in this dark world and this dark place - and I see so much love, peace, joy, grace and hope flowing out of your hearts into the atmosphere and world around you - wherever you go! You guys are amazing!!
And Sawyer . . . what a little man! :) I pray blessing of joy - ABUNDANT joy over that little guy! May he be a fountain of joy even in the midst of these difficult times and things he has to go through. God - fill him up up with your supernatural joy - an ABUNDANCE of it - so much that he can't contain and it leaks out onto everyone around him!
Daddy - we ask for total healing for his body! Restore his body (eyes, kidneys, bones, and everything) to perfect health! May he be a testimony of your love, grace, mercy and healing power! Cover him with your wings. Let him rest in your arms. Fill him up with every good thing that he needs, deserves and desires. Let him know your love in a way that no one else knows. Let him know you and your amazing love - personally - even at such a young age. Let him know that you are never far away - and that in fact, you are usually carrying him in your arms through all of this! :) Thank you Daddy for loving Sawyer (and the whole DeBause) family - more he (they) could ask, think or imagine! Pour out your love and peace upon them today - and be right by their side as they take one step forward - one step forward - one step forward . . . holding your hand all along this journey - and enjoying it as much as possible. :) Fill them with your joy and peace today . . . overflowing!!
Thank you Daddy!
Love you guys!!
Lori :)
Matthew 6:33-34 Yes,dear boss, stay focused on today. God is in the tomorrow's but you won't see his hand until you get there. So stay in the present and you see Him as He reveals Himself today. Trusting Him to heal our children.
Most children fight pretend enemies on the screen...Sawyer is a brave soldier,fighting "enemies" he can not see and ones who don't follow the rules.
A trophy...yes...and also a medal!
May the love of his heavenly Father
be his strength. Lord, give him joy and victory in the midst of the battle.
Dear Toby and Karen,
After reading your blog and all these beautiful, inspiration, motivational comments, I am wordless. Yes, me. :)
We love you and will continue to uplift you all in prayer day by day as you face the giants, one by one. May His grace truly be sufficient for each need. I was touched by Sawyer's grateful thanks to "Gawd" post-surgery. I do pray that he comes to know His Father God in a way that all of us would cherish.
Love and prayers,
Joan and Jan
My heart just aches for you guys. Sawyer is just such an amazing and fun little boy, I long for his healing and for this pain to end. One day we will all understand, but until then we can only trust and know that our God is good and loving. Give him a big hug & kiss from Miss Debbie!! I love you all and continue to pray for you.
Between "...and we keep picking the wrong doors to open." and "but nothing will stop him from stepping on to that field. We are putting his uniform on now." how can anyone read such words without tears??? Man, I know you guys are ready for a TIME OUT for sure! And I hope you get one, for Sawyer's sake.
Yes, one day at a time...one hour at a time...whatever focus God gives you, do live within that time frame alone. I know God is faithful, that He loves you ALL, and that He WILL carry you when you cannot take another step.
Oh, God, things are looking right for a miracle. Help us see with Your eyes!
We continue to pray for your family.
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