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Rubinstein-Taybi Syndrome
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Made with Love for families and friends of Rubinstein Taybi Syndrome children and adults
to learn more about iPads, apps and a little bit of everything else.



iPad Accessories (hot gadgets)
iPad Accessories (hot gadgets)

Saturday, October 29, 2011

When a child bully’s another child


A teacher in New York was teaching her class about bullying and gave them the following exercise to perform. She had the children take a piece of paper and told them to crumple it up, stamp on it and really mess it up but do not rip it. Then she had them unfold the paper, smooth it out and look at how scarred and dirty is was. She then told them to tell it they’re sorry. Now even though they said they were sorry and tried to fix the paper, she pointed out all the scars they left behind. And that those scars will never go away no matter how hard they tried to fix it. That is what happens when a child bully’s another child, they may say they’re sorry but the scars are there forever. The looks on the faces of the children in the classroom told her the message hit home.
-Author Unknown-

Friday, October 28, 2011

A Personal Message from Buddy to his Teachers and Classmates

The love of family and the admiration of friends is much more important than wealth and privilege
Charles Kuralt

Buddy had a visitor today! Yes, Mr. Wilbank's came to visit, they sat and talked and Mr. Wilbanks surprised Buddy with a cute little pumpkin and a whole bunch of get well cards from all his teachers and all his friends! 

What a nice visit they had. Buddy was so happy to see Mr. Wilbanks and kept signing school, school, he's ready to go back to school. Unfortunately it may be a few more weeks before Buddy gets to come back and see all of you, his friends.

Buddy would like to thank all his teachers and all his friends at Ypsilanti, Middle School for all the Great Get Well Cards. They are all beautiful, what a thoughtful thing to do. 

A Big Huge Thank you and BIG HUG From Buddy to all of you!

















   
♥ THANK YOU ♥

VIDEO: The Transformation of Buddy's Therapy Room

♫ Believe that life is worth living and your belief will help create the fact ♫
William James 

Buddy's therapy room transformation
 music, written-played and sung by Buddy's Grama
[turn the music player off at the bottom to watch/listen to the video]



YES, LOL, I know I can't sing but it's the thought that counts ♥

Thursday, October 27, 2011

UP-Date Buddy's Hamstring Surgery 10-25-2011

"When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has opened for us"  -  Helen Keller  
 Home Sweet Home! 
A restful night was had by all and all really needed it.
Buddy slept through the night w/out waking up for meds. He's on pain medication every 5 to 6 hours now. I try to wing him as soon as possible, although I don't want him to be in pain and don't let his pain threshold go to far,  I don't like the idea of a 12 year old becoming addicted to pain medication. 
The Therapist and  Home Nurse have both cancelled on us today, they are both coming tomorrow at which time I will find out when we can get Buddy up on his feet, get him moving, what his physical therapy program is going to entail and what his plan of action will be. The Dr. says he should be able to stand and walk with the use of his walker within days of his surgery. 
His therapy room is done, complete with a brand new Exercise Bike, small trampoline, lg bouncy ball, weights and other goodies to get him motivated and moving!
I did, as promised, make a video so without further a-do here it is.
[shut player off at the bottom of the page to listen to video, thanks]
 

Tuesday, October 25, 2011

Surgery Day For Buddy

And now, this is the sweetest and most glorious day that ever my eyes did see.
Donald Cargill



Buddy is having Hamstring Surgery today, we check in at 11:am sharp at the University of Michigan Mott's children's Hospital in Ann Arbor Michigan. 

I guess I'm grateful that he really doesn't understand what is about to happen although I've explained it to him, he thinks we are going to the Doctor and then we get to go to a restaurant and eat. 

He's going to be very upset with me when he wakes up. 

Everyone is up running around getting ready, his sister Leah is going with me. Please say a prayer for Buddy that his pain is light and that this surgery works and he'll walk again. 

Had my last cup of joe, time to go

--------------------
8:30 PM
I grow more intense as I age
Florida Scott-Maxwell

It's late, I just wrote a blog and it vanished before my very eyes, Ugh..
Buddy went through and came out of surgery just fine, no complications at all. He has been taken off the Morphine Continuous Pump and is going on a low dose of pain meds from here on out. he has been resting comfortably and cooperating when asked. A big thumbs up!

We are staying here all night, I am right by his side and how cool is this, they have a computer and Internet access for us right in the room.

We also just got room service the food was good however Buddy won't eat his yet and the chocolate cake was divine, and NO I didn't eat his piece...YET

They are very nice and helpful here at Motts Children's Hospital and make you comfortable.

Buddy will be getting his KAFO Braces tomorrow, he was casted  for them while in surgery then if all goes well we will be on our way home.

Photos and a Video to come

Good Night Friends.

Monday, October 24, 2011

  Do not dwell in the past, do not dream of the future, 
concentrate the mind on the present moment.
'Buddha'  

Rubinstein Taybi Children are known to have slippery knee caps, this is what happened to Buddy, his left patella slid to the side of his knee. 

Buddy had knee surgery in April 2009, after surgery with the help of a KAFO leg brace he was able to walk, then his foot went numb from the brace, once we got the feeling back in his foot the brace was to small and he took a turn for the worse and his knee contracted.

After a 2 month stay at Shriner's Hospital in Louisianan and weeks of recasting, they were able to un-contract the knee but without re-bracing him in a KAFO, he stopped trying to walk and took a turn for the worse, now both knees are contracted. 

We have since moved back to Michigan and Buddy has a team of Doctors at the University of Michigan Hospital that have tried everything to help him, his last chance at walking again is Hamstring Lengthening Surgery. 

Buddy has gone through MRI's, CAT's Ultra Sounds, it was found that he has slight scoliosis w/a low lying spine w/small fatty tissue at the base w/no signs of a Tethered Spinal Cord which all RTS children should be examined for. .

As of today Monday October 24, 2011 both of Buddy's knees have contracted, he is scheduled for hamstring surgery Tuesday October 25, 2011 at the 
University of Michigan Hospital 
in Ann Arbor, Michigan

I hope you enjoy some of the videos we have made over the last few years of Buddy's progress, trials, set backs, and victories. 

[turn music player off at bottom of page to watch video's]


Friday, October 21, 2011

Ypsilanti Michigan Child w/Special Needs receives iPad from A4cwsn

 Countdown Buddy Meets Gary James in 1 day!! 


On November 4, 2011 Bradley Howard, will receive an iPad2 personally delivered to him by Gary James, founder of A4cwsn.

My Grandson Bradley "Buddy" W. Howard Jr. has a syndrome called Rubinstein-Taybi Syndrome, Buddy is 12 years old and attends The Special Needs Class at Ypsilanti Middle School.

The use of the iPad  is quickly becoming a recognized and accepted learning tool for special needs children/adults. Gary James has made it his life's mission to make sure every special needs child/adult in the world who needs an iPad gets one. Gary started A4cwsn about a year ago, A4cwsn provides iPads to kids and Adults w/Special needs around the world, we have groups in Australia, Canada, Europe as well as the United States.

Gary has a website A4cwsn.com (Apps For Children with Special Needs), and a Facebook page,  [https://www.facebook.com/a4cwsn] and has recently incorporated a nonprofit organization in his home state of Connecticut called Very Special People, Inc.
Developers of learning apps and parents of special needs kids/adults have donated Thousands of Dollars for A4CWSN and over 80 iPads have already given away to Children/Adults with Special Needs in the past 6 months.

Gary/A4cwsn recently awarded iPad's to special needs children in each of the 50 states, the campaign is called 50 iPads-50 States-50 children. Gary is on the road as I write this letter personally delivering the iPads to the recipients in each of the 50 States. He will be in Michigan on November 4th to speak to a group of special educators in Bad Axe, and then will deliver the iPad to the Michigan recipient Bradley "Buddy" W. Howard jr. who is my Grandson that very same day.

Gary has now launched a campaign called
500 iPads / 100 Schools [http://a4cwsn.com/500-ipads-100-schools/] to get iPads to special needs children in schools, AND he has just started iPads 4 Military Families Children who have Special Needs.
[ http://a4cwsn.com/ipads-4-military-families/
]

He would love to tell you more about his mission and you can contact him at gary@a4cwsn.com.

It would be nice to see this great human interest story on the news! But I'm not having much luck with any of the news papers or TV stations contacting  me back.

I do hope someone will consider doing a story on Buddy receiving an iPad2 from A4cwsn. I have also nominated Ypsilanti Middle School to receive iPad2's for their special needs class through 500 iPads / 100 Schools..