Albany County Correctional Facility for Children's Benefit Albany NY

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 

View Photos from ACCFCB on PhotoBucket

Click here to view ACCFCB Photos Present to Past

Olivia age 6 Performs @ 5th annual "Teed Off For Tot's" golf classic event

   

Olivia, Alexandrea's younger sister sang "I'm Proud to be an American" on June 26, 2009 during the banquet of ACCFCB's annual golf classic fundraiser. She performed the song flawlessly and with grace! We are very proud to invite Olivia back to perform a new song @ our 6th annual event to be held on June 25, 2010.

Congratulations Olivia and THANK YOU! 

E-mail w/ photos to ACCFCB from Dee (mom of Matthew "Buddy" LaFontaine- triple transplant recipient)

 

Dr. Kim Transplant surgeon @ Boston Children's Hospital w/ Buddy after successful surgery

 

Buddy w/ support of little brother Patrick in Boston for check up.

 

Dialysis 6 days/ week, 4 hours per evening prior to transplant to keep Buddy alive

 

Successful Triple Transplant Surgery Recovery @ Boston Children's Hospital w/ mom @ his side

Hi John,

Well,first, how are you?? I can't ever say enough how totally, completely grateful to you (ACCFCB) all of us are for your help,,,,due to your endless support and generosity,,,,you contributed so much to his recovery,,,,as I've said to you so many times,,,can't say it enough,,I couldn't even begin to imagine what we would have done without you,,,,my mind couldn't even "go there" while he was still in the hospital, as I was overwhelmed with worry,,,,and the absolutely terrifying future worry of what in the world we would do with his required out patient stay and the subsequent trips to Boston,,,,,

Anyway,,here is a wonderful pic of Buddy with Dr. Kim, the brilliant doctor who gave my son his life,,,,,,and some other pics,,,,,and I hope not too upsetting pic of this Dr. Kim's work...

Then,,some wonderful "after" pics,,,,,I remember wanting a pic of Dr.Kim with Buddy days after his transplant,,and doc said he wanted to wait until Buddy was up and around,,,and now I see why,,,,,

Hope things are well with you,,,,and thank you again with all of our hearts,,,,
Best, as always
Dee (Buddy's mom)

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Hi Dee,

 

Thank you for the updates and the photos!

I plan to update his part of our web site with a couple of the photos soon. What a blessing his situation has turned out to be. Your son as well as your family deserves a lot of credit for handling the situation as well as you have.

 

It certainly makes us feel good knowing the impact that our organization has in such delicate situations as yours.

 

Thank you very much for the feedback, I will share it with our group.

 

Sincerely,

John R Smith, President ACCFCB

"WE ARE COMING HOME!" (Connor Menneto Update 08-14-09)

 

 

We are coming home!

 

This is Connor's 7th week of the 3 week Program. He is walking so well. The color in the leg is great. The pain is there but not like it was before we came here. He is working hard on his arm and is showing improvement but it is still very painful and the color isn't great. He is going to have to work hard on the arm at home.

 

This program (@ Cleveland Children's Hospital) has given Connor back so much. It's been really tough on him. I have heard reports from the other kids of how Connor is in so much pain during therapy but he hasn't complained.

 

We can't thank everyone enough for giving Connor this chance. To see him walk and even run sometimes takes my breath away. We know that he will have to keep fighting this disorder but he has gained so much of the function he had lost. He is in such a better place mentally than he was before. 

 

"Connor is starting to believe he will get his life back".

 

I know you have all done so much, but I did want to let everyone know we are having a fund raiser at the Valley Cats on Aug 29. The tickets are $25. The ticket is for a buffet dinner before the game your ticket to the game and a baseball hat. The Valley Cats play the Staten Island Yankees. For tickets or more info contact John @ 475-1858. Connor will be there to throw out the first pitch. 

 

Thank you all

Rose

(Connor's mom)