Saturday, March 19, 2011

Blue Straps and Black Markers

We are beyond weary.  Exhausted and grieving for one little boy who learned yesterday that sometimes promises kept doesn't mean joy unspeakable.

We traveled to Philly yesterday for Round 10 of Aaron's casting process.  It was supposed to be a joyous occasion as Aaron has finally finished the weekly treks up to Philly for new casts.  His feet are flat.  He was getting braces.  No more casts.  Over and over he chanted these beautiful words.  No casts... nope... no casts.  Braces.... no casts.  He didn't sleep on the way up despite dragging him out of bed at 1:30 am.  We tried but he was too excited and happy to be riding in the "Big Van" with Daddy and Mommy to get those casts off his feet.



We had a wonderful Reece's Rainbow reunion with a bunch of Reece's Rainbow families and more kids than you could imagine piled into the waiting room on the 4th floor of the Shriner's hospital.  What fun to look among the chaos and noise and see all the rescued treasures interacting and playing together.  Oh we had a blast trying to gather all those wandering children into one active pile to get pictures.  NINE of the children pictured below are Reece's Rainbow children.  ELEVEN of the children in the picture are adopted.  Seven of the children have Arthrogryposis.  Wow!   Shriner's Hospital doesn't know what hit them!!


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When Aaron first got his new braces he was happy.  They sport rockets and spaceships and fit nicely onto his feet. 




Then Dr. Van Bosse entered the room.

He pulled a black permanent marker out of his pocket and the happy experiences of the day vanished in the wind.

Four blue straps on each brace.  He placed the first strap on at the top of the brace and wrote a number 2 on that strap.  No issues from Aaron.  All it does is hold the brace in place.  Then he put the second strap on.  The number 1 strap.  The one that crosses his ankle.  The one that holds the foot firmly into its flat position.  He put that strap on and he tightened it.  To the fullest extent.  Aaron gasped and tears began to pour down his face.  Then Dr. Van Bosse marked the strap with his marker.  THIS is where this strap goes.  THIS is where you MUST keep this strap.  It should NOT be loosened.

He wasn't done.  Straps number 3 and 4 were then placed.. on each side of the brace... these straps pull the feet up... stretching them... just as if he had on casts.  He cinched those straps... to the tightest position.  Aaron again cried out.  The black marker again marked the straps.  THIS is where these night straps need to be.  You have THREE days to get them to that position.  EVERY night you need to tighten these straps.  They will stretch his feet at night - while he sleeps.

Aaron wept.  Tears pouring down his face.  Straps 3 and 4 were removed but strap 1 - it stays.  Tight.  Firm. 

Braces.  Blue Straps.  Black Markers.  One traumatized and wrecked little boy.  He cried all the way home.  Rocking.  Banging his head.  Throwing his body around in his car seat.  Over and over and over again.  Hour after hour of that long rush-hour filled ride home.  Reminders to us that he spent six years self-soothing because he knew not the comfort of loving parents.  We did all we could short of loosening that strap.  Nothing worked.  We put our little son to bed crying.  Rest encouraged only by drugs coming in fits and cries throughout the night. 

This morning - he still sleeps fitfully.  Rocking in his sleep.  Crying out.  We stare at each other in exhaustion and sorrow.  We know this will pass.  We know that he will accimilate to his new normal.  We know.  But knowing and experiencing seem very far apart at this point.  Right now, in my opinion - braces, blue straps and black markers stink.  Watching my little son suffer - beyond words.

For all those wondering and praying for the Davis family.  There is hope.   I don't have the energy to post today but they ARE going to appeal.  I will share what I know tomorrow.  We ARE going to stand with that family in prayer like we have never prayed before for Kirill and HIS FAMILY.  God is going to win because He has already won!

17 comments:

  1. Poor guy! Thanks for the update. You are such great parents to understand Aaron so well. Praying, too, for the Davis and their appeal. This gives me hope!

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  2. Oh Julia...I am crying. And praying for Aaron.

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  3. ben was the same way. cried all the way home. cried all night long. be sure to watch for marks on his feet. they will quickly turn into pressure sores. hope he can get some new shoes and perk up that he can learn to run and play. good to see you yesterday. hugs. he will learn. I promise.

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  4. I'm so sad for Aaron having to go through this and you all having to watch it when you want nothing but happy times for him :( Continuing to say words of thanks that mountains were moved so he has parents by his side for all the tough times now. Prayers for endurance for all of you. God bless, Jennifer

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  5. we were so happy to meet up with you all!! so sorry that Aaron was hurting!! Gerri really hurt when she first got her AFO's, it was SO hard. We had to keep giving her pain meds for a couple of days till her feet got used to them. praying the feet settle soon!!
    Hugs little boy!

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  6. I really appreciate you sharing this part of your lives Julia. It helps us prepare and pray for Madeline and Gage's future treatments. One more week and we'll begin the long journey of the unknown for our dear child.treatments.
    Praise the Lord for the appeal. We'll keep praying. And praying for you too. Get some rest :)

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  7. Hug that beautiful boy for me. I had a dream last night that I went to a store and there was a huge sale on Thomas stuff and I bought him stuff!

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  8. Prayers for your little guy and for the Davis family all weekend!

    Carla
    Bringinghenryhome.blogspot.com

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  9. Praying for you and your sweet boy that God takes the pain away and he can be his happy self again. May He give you the strength to get through this.

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  10. Praying for your little boy. I'm so sorry he is hurting thru this process. Sending prayers and many hugs as well.

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  11. Oh we will be in Philly in 3 weeks to start the same process only to end with the same braces. In one way I am thankful for knowing what to expect and another way my heart breaks for our boys and what they have to endure.

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  12. Praying that Aaron get used to his new braces and straps soon. Also praying for the Davis family.

    Blessings,
    Barbara

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  13. Prayers for your family - and hugs for Aaron, and you. It's so hard to witness a beloved child suffering pain, no matter how necessary for the final outcome...

    I hope your weekend improves, and will send you a just -received photo of my own dear "2 from U".

    Susan in Ky
    Cousin to two from U-know-where!

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  14. Oh Julia...I know it has to be so hard to see him in discomfort. You know, I just can't get over how much he looks like your family. You couldn't have a bio son who looked more like you. Hee hee! He's so adorable and looks so happy in the pictures you posted...I just can't imagine him sad. :( I am praying very hard for you all.

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  15. Praying for Aaron that those straps don't hurt for long and that they do their job quickly.

    Sylvia

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  16. Be strong and more. Watch for sores. Praying for all the little AMC heros out there!

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  17. Praying for Aaron, be strong, little one!
    And praying for Kiril, praying for a miracle.

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