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!
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....