Connor Menneto is HOME! "pain is pain but suffering is optional"- Connor

8-17-2009 an email From mom to ACCFCB......

 

Hi Guys ,

Connor and I got home on Sunday .  He is walking, climbing the stairs, skateboarding, jumping, and even running.  He is working hard on his arm.  He is able to do so many more things.  He is playing Wii boxing right now,  it is part of the therapy.  It is his favorite part.  I still just sit and watch.  To see him move around and smile.  Him being active and not yelling in pain is still new to me.  I will never take his movements and activity for granted.  I will never take him smiling and happy casually.

The last week of treatment I was told by everyone how different Connor was.  They all kept asking about the changes in his attitude and personality.  He hadn't changed he was becoming himself again. He is back to being outgoing and wanting to interact with people.  He is willing and anxious to try new things.  I watched him becoming himself as he was able to do more things.  The pain is still there but he is able to function.  The function will lead to decreased sensation and less pain.  His new saying is pain is pain but suffering is optional.  He also likes long term problems require long term solutions.  He is still not totally himself but he gets mentally stronger all the time.  He is off all the opiates. He still takes oral Ketamine, he'll stay on that until his function is almost normal.  But he is trying to get off all the other medications. 

Watching Connor in constant pain has been a nightmare, but I feel the nightmare is over.  What he was able to achieve at the pain program was a miracle.  Before we left he felt he'd lost his life and had no hope he could get it back.  He worked hard and there was a great deal of pain but in the end there was hope and a promise of getting his life back. There are no shortcuts in CRPS, he has to work on it everyday for the rest of his life.  He was given the tools he needs to keep the disease in control. 

His father and I want to thank everyone who helped our son get the treatment he needed.  His doctors in Albany did a great job to get him ready for the Pediatric Pain Rehab at the Cleveland Clinic. That was the treatment he had to have.  There was no other way to get him functional.  It awful to know the treatment your child needs and not be able to get it for him.  You and everyone who donates to your fund have given our son back to us.  There are not enough  words to express our gratitude. 

We have not received a bill form the Cleveland Clinic.  We paid them for 3 weeks and Connor was there 7.  There are also going to be charges for treatments that are above their normal care.  I can not say how much it is going to be but we are grateful for anything your group can help us with. 

 

-Rosemary Menneto 

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