Wednesday, May 22, 2013

Pressing On

So many of you have asked about Aaron.  How he is doing.  How his recovery is  going.  So many of you love our little guy and we are ever so grateful for that love.  You care about him and that just plain makes me a blubbering mess!
Honestly, I have wanted to respond but I struggled with how in the world I would share.  The last 2 1/2 months have been so hard as we have watched our little guy suffer.  The first month we went into survival mode around here.  We counted the hours until the casts came off and Aaron could get back to being Aaron.  The second month we kept waiting for him to turn a corner so we could rejoice with everyone at the success of the surgeries.  Unfortunately, that didn't happen.  This week we finally e-mailed Aaron's doctor and got news we really didn't want to hear but in some ways are relieved to know.
So here's the update..
Aaron had 3 different types of surgeries done. 
ONE:  Aaron had his left arm rotated....
Before surgery Aaron's left arm was rotated backwards with his fingers pointing behind him.  Now Aaron's left arm is turned inward with his fingers in a more natural position! 
This surgery was absolutely a wonderful success!  He's one happy boy that he can now use BOTH his hands to write and color and build.  The recovery from this surgery was easy and it was not super-painful.  It took his arm a good bit of time to heal and he only just recently was released from wearing the splint but it was a great surgery!
BEFORE                                                    AFTER  

TWO:  Aaron had the tendons in each of his hips nicked to enable him to stand up straight.  This surgery was also a great success although it was most definitely painful.  It took much longer for him to recover from the pain in his hips than it did the arm despite that one being the more invasive surgery.  Aaron can now stand perfectly straight.  Since he spent 8+ years pulled over - it is going to take time to retrain his brain into standing/walking erect all the time. 
The biggest incentive is seeing in the mirror how much taller he is when he stands erect. 
 THREE:  Aaron's knees.
This is when things break down.
This is where I shake my head and wonder.
This is when Rob and I clearly see the sorrow in each other's eyes.
Aaron's surgery on his knees was done in order to give him the ability to extend his knees fully.  In the long-run, being able to extend your knees is rather important.  It prevents a lot of pain as an adult.  Before we elected to do the surgery, we asked over and over whether Aaron would lose the range of motion in his knees.  We were reassured that he would not lose range but should keep what he had and would most likely GAIN range. 
So we agreed to the surgery.
The day after the surgery I seriously wanted to go to pieces on the floor. 
The knee surgery devastated him on every single level.
You have to understand.... our little guy spent 6 years institutionalized.  One of those years was in a Level 4 mental institute.  He went through numerous surgeries in those six years without anyone holding his hand or comforting him.  He suffered physically and emotionally.  He suffered loss and abandonment.  At the institute he had virtually lost all but a handful of words in his own language when we adopted him. 
But he maintained hope in all of that. 
And part of that hope was his ability to walk.  He was not tied down.  He was not wheelchair bound.  He walked on his toes...
And he fell all the time...

But he walked.
After we brought him home - we immediately set out to get his feet flat...
Flat to run and play and not fall quite so much...
And he LOVES his freedom.
Walking and running mean everything to Aaron.
Four weeks in casts was emotionally devastating.
We did not consider the emotional impact of that loss on him.  To be blunt.  He regressed.  We saw behaviors come back that had disappeared long ago.  We saw new behaviors that we had never seen before.  We watched his speech deteriorate in a way that shocked us. 
Watching his speech crumble was like being given a window into his transfer year. 
It ripped my heart out.  I could not stand seeing my talkative, happy, learning new words every day little boy shut down so unbelievably.  I wouldn't have believed it if I hadn't seen it with my own eyes.  All of us noticed.  All of us saw.  The rocking.  The banging.   The despair. 
And the pain.
From the day he had surgery he had intense pain in his left knee.
Pain and more pain.
And it hasn't gone away.
He lost range of motion in both knees.
As the right knee healed though - the pain decreased and he was able to bend it. 
This was what was SUPPOSED to happen.  The right knee doesn't have full range back but we are not worried about it.  A swimming pool, his bike, the trampoline... walking and running.. Aaron will have it back in no time.
BUT... the left knee...
It is stuck.
That's it.  He can't bend past that point.  Poor babe.
It isn't a matter of him not wanting to bend it... We can't even bend it.  It is rigid.
We kept hoping that as the pain decreased that he would start to bend it but it hasn't happened.  We waited and waited and worried and waited.
Not bending his knee means he walks Frankenstein style. It means he is prone to fall. It means he can't go up and down steps easily.  It means that he screams in pain any time I try to massage it and stretch it. 
Tears and Sorrow!
When we tried to get him on his bike this week in anticipation of bike day at school - it was then that we realized that something was seriously wrong.  Up until then we had been hoping and praying and hoping and waiting and hoping some more. 
But when Rob tried to bend Aaron's knee so that he could put his feet on the pedals and could NOT bend it past 5 degrees..... I rained tears and went into the house and e-mailed the doctor.
What we learned.... Aaron is the FIRST child that Aaron's doctor has ever had that has lost significant function after the plates were put in.  He's one of a kind!  
What are we going to do....

Wait it out until the first of July to see if thing ease. Do some non-invasive therapy (heat, massage) to try to help heal the knee.
If he still is as stiff as a board in July then we have several surgical options.  We will cross those bridges when we get to them.
As for Aaron... despite his knee giving him major trouble... overall  - he is coming out of the long dark tunnel.  He had to relearn how to do a lot of things he could do before.  Each time he masters a new/old skill he is filled up with joy. 
He's getting a new lease on life as he gains back what he lost.
And yesterday he was given back a beautiful gift...
When Rob couldn't get Aaron's left knee to bend enough to get on the pedal.... He started making adjustments to his  bike... After adjusting the left pedal so that it barely turns, last night Aaron was able to pedal his bike. It's hard.  He has little power and his right leg, which is still not 100%, has to do all the work, but tomorrow for bike day... He gets to ride with all his friends around his school parking lot.

Thank you Jesus!!
We love our little guy.
Watching him suffer these past few months has been hard.
We don't regret two of the three surgeries.  We don't even regret the wisdom and reason for the third surgery.  It was NOT a wrong decision.  No one could have anticipated that Aaron's knee was going to be so uncooperative.  And it is not hopeless.  There are options.  So we press on.  He's a tough little guy and hope lives in him. 
In his words - "It will be better tzumorrow!"
P.S. I'm off to North Carolina to the North Carolina for Home Education Convention early in the morning!  If you are in the area... stop by my booth!!  I'm selling used books to raise money for my sweet son for his trip across the ocean....


  1. sometimes if a joint "freezes" post op, before doing additional surgery, the docs try steriods for anti inflammatory purposes and dynasplints...but don't know if he would tolerate that?? hugs

  2. So know the feeling of having to watch your child decline and not gain healing as all had hoped, and explained. Praying for all of you, for healing for Aaron physically and emotionally, for strength and wisdom for you as parents, to wisdom and skill to the physician. Hugs

  3. So sorry, Julia. You know we are big Aaron fans here. Can't imagine how discouraging this must be for all of you. Dennis had an excrutiating recovery from shoulder surgery a few years ago due to scar tissue that was so rampant, the surgeon said he had never seen anything like it before. It did resolve, but took another surgery. Praying that Aaron will have a miraculous recovery in the next two months.

  4. Julia, My heart goes out to Aaron. Will water therapy in a pool help? There is less gravity/resistance due to the buoyancy. Maybe some appropriate gentle knee-bending exercises recommended by his physical therapist? Another thought - scar tissue can form and impede movement. But I'm sure the surgeon has ruled out that possibility.

  5. The doctor is fairly certain that it IS scar tissue that has formed!!

  6. Please, please tell me that Aaron's speech is returning to its pre-op level. He has so many important things to say! Miss Cookie

    1. It IS returning.... It scared us silly and saddened us deeply but he is now talking all the time. You would be so proud of him!!

  7. I am so sorry that Aaron has had to endure all this unexpected pain and disappointment - and that you and his dad have had to endure all the worry over this very unexpected and unwelcome outcome. But I am thankful that his spirits are lifting, and that the Aaron's true personality is re-emerging.

    Along with all of Aaron's fans, I hope that PT will help him regain function, and if that doesn't happen to a satisfactory level, that a simple "release" surgery can effectively address the problem.

    Meanwhile, would some of those smelly rub-on creams that are suggested for knee pain help a bit? I have knee issues of my own - nothing like Aaron's - but using a combination of simple, readily available things to counter the pain seems to help me best: smelly rub-ons at times, soft wrap-around velcro brace, exercises, ibuprofen,a moist heating pad, hot soaking baths, etc. Although the cause of his pain and stiffness is quite different, perhaps some of these things might provide a little relief and encouragement for Aaron as well.

    Thanks for letting us know - Aaron will be in my prayers.

    Susan in Ky
    Cousin to 2 from EE

  8. Julia, Thank you for the update. What a brave little boy. He must have been so scared even though he was being reassured by everyone. I love to see him standing up straight! I'm praying for Aaron.

    Sue H.

  9. Oh my goodness, how heartbreaking! I will be praying extra hard for Aaron's spirit to recover and for the scar tissue to miraculously be healed. I'm so glad you figured out a way for Aaron to still participate in Bike Day.

    Jennifer @

  10. it breaks my heart to think of him not smiling and being in so much pain both physically and emotionally. I am sorry for your mama's heart too. Praying it will get much better with time.

  11. God has given you an amazing depth of perception pertaining to Aaron! It is soooo obvious He put Aaron in your family-such understanding, love and grace! Praying the God of all mercies will keep healing Aaron and all your hearts which love so deeply.

    Your friend,
    Kelly M.

  12. I am so sorry to hear this update on his knee. Thankful he is getting back to himself on the other things. We will be praying fervently for his knee to start functioning on its own without another surgical intervention.
    My heart goes out to you all as I know this has had to be the hardest thing to sit by him and watch.
    Love, hugs and prayers to you all.

  13. Oh Julia, I am so sorry for Aaron. I'll continue to pray for his knee and praise God for what he did gain in these surgeries!!! I know this is so hard for everyone.

  14. So sorry for all that Aaron and his loving family have gone thru since his surgeries. Thanking Jesus that Aaron is standing taller and his hopeful spirit and speech is returning. Praying for healing and range of motion for his knee. PS I 2nd the idea for water therapy.

  15. Oh.This just breaks my heart:( We'll be praying that the Lord HEALS his knee so he won't have to endure another surgery so soon. Sheri

  16. I will keep Aaron and all of you in my prayers.


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