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Old 09-28-2011, 08:45 PM   #1
starienite
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Devon's Make-A-Wish PTR! Departing for Magic on Feb 16th!

*Devon's TR is located here*

Welcome!

This is the PTR for my son Devon.

Devon was born, unknown to us, with a Cerebral Arteriovenous Malformation (AVM). An AVM is when the connection between arteries and veins is a tangled mess, the technical term is nidus (Latin for nest). The American Stroke Association has an excellent explanation. http://www.strokeassociation.org/STR...99_Article.jsp

So back to Devon. This was Devon on 12/18/10:

Then at 3:30 in the morning on New Years Day, 12 days later, my husband woke me up telling me that he can't wake Devon up. I tried everything, cold water in tub, yelling, slapped his face. Nothing. He mumbled and postured, but never fully woke up. We called 911 and waited. When they got there, they thought that maybe he had a seizure, or undiagnosed diabetes because his blood sugar was through the roof.

We were taken the hospital where by this time he had stopped talking, but still moving. They did a CT and found bleeding in his brain. They didn't know what caused it and he needed to be life flighted 70 miles away to the Children's Hospital. Luckily my parents lived only a few miles away so we had someplace nearby to stay.

Devon had pressure building in his brain so they had to drill a small hole in his skull and insert a tube to release the blood and spinal fluid creating the pressure. For 12 days this what Devon looked like:


During those 12 long days he was in a medically induced coma. He had MRI's and CT's confirming AVM in his right Thalamus that measured about 2.3 X 1.5 cm. When his ICP was under control they were able to wake him up. He spent the week or so withdrawing from the pain meds they used to make him sleep. Said some pretty funny things.



Devon was then transferred to different hospital for an embolization and brain surgery.
Devon the day before surgery with Tiger the therapy dog.



The embo and surgery reduced his change of re-bleed to 5%, but they couldn't remove the all of the AVM without damaging his brain. So in March he had a procedure called Gamma Knife (http://www.stjosephs-phx.org/Medical...r/SJH2_M086596 <-----video).

During his medically induced coma, I discovered that his condition may be eligible to Make A Wish! Oh boy did it take a while to get everyone on the same page. Not faulting MAW in anyway just that when they would call the doctor we gave them Dev wasn't there patient anymore, but no worries it all worked out.

This is Devon today

He is wishing to go Disney World, meet Phineas and Ferb, and skip every single line. We are hoping to go in February or January, or April (last choice).

This is his spunky, lovable, imaginative, smart, clever, beautiful sister Cassidy


Meeting our wish grantors
Semidates
Getting our dates!
The more the merrier!
Christmas was great for the trip!
It is coming sooner than I realized.
We have our flight info!
Inspirtation Through Art
First Big Give Package!
Finally Open!
2nd Day of Big Give Arrivals!
Lots of Big Give Today!
Friday's Big Give!
Dev finds out when he is going!
Monday Big Give Bonanza!!!!
Video of Devon getting the news
Bit of a mom brag
Devon's Big Give Thursday Delivery
Big Give from the Great White North
What the postie brought today
Giving Back
Surprise Mail on Monday
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WDW Wish Trip Febuary 2012
Disneyland July 2013

Devon's MAW PTR Departing February 16th!
The Most Awesome Trip Ever! This is Devon's MAW TR!

Last edited by starienite; 07-19-2012 at 01:05 PM.
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Old 09-29-2011, 08:54 AM   #2
BuzznWoodysMom
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Welcome!

Welcome, it's nice to meet another AVM mom! Please read my PTR. Talk soon!
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Our pre-trip report, MAW/GKTW
http://www.disboards.com/showthread.php?t=2787581


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Old 09-29-2011, 06:05 PM   #3
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WOW!! What a story - he is so adorable!! Im a therapist at a children's hospital in DE, and I have worked with a child who had some issues resulting after his AVM Surgery. These kiddos are such troopers in my eyes!!! I hope he gets his wish!!!!!!! Please keep us up to date on whats going on!!! So excited for you!!!! Please feel free to ask any questions!!! I went on my nephew's MAW trip in 4/10 and we had a GREAT TIME!!!!
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Old 09-29-2011, 06:33 PM   #4
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We feel incredibly blessed. Dev was in a intensive neuro rehab following his surgery for about two weeks, then he had weekly outpatient therapy for a few months.

Today he has almost no issues, probably a little more impulsive, doesn't pay attention to his surroundings sometimes, but he doesn't have any learning difficulties or memory impairment.
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Devon's MAW PTR Departing February 16th!
The Most Awesome Trip Ever! This is Devon's MAW TR!
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Old 09-29-2011, 06:41 PM   #5
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Quote:
Originally Posted by starienite View Post
We feel incredibly blessed. Dev was in a intensive neuro rehab following his surgery for about two weeks, then he had weekly outpatient therapy for a few months.

Today he has almost no issues, probably a little more impulsive, doesn't pay attention to his surroundings sometimes, but he doesn't have any learning difficulties or memory impairment.
He is so fortunate!!! Im an OT! Has Dev every tried Interactive Metrome? Its a modality that OT/PT uses in therapy. It actually retrains your brain and helps you learn to focus - you do alot of repetitive exercises to a beat that measures your reaction time, and you try to get your time closer and closer to the beat (in milliseconds). It helps to build a superhighway in your brain so that you process better (less impulsive) and learn to focus - its an AWESOME TOOL!!!!! He is the perfect age too!!!!! Most kids that age love learning to beat their scores - lol!!!!!! If you'd like any more info, I could help!!!

you will have SO MUCH fun on your trip! Have you guys been there before?
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Old 09-29-2011, 07:39 PM   #6
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Devon has been discharged from therapy, but we may have him evaled by NeuroPsych in 2012 (he just about gobbled up all of his coverage for therapy for this year). His impulsiveness is more like, shouting out the answer in class or rushing through homework.

He responds well to joint compression therapy, even now I will give him a once over to settle him. Enjoys squeezy hugs a lot more than before, which is fine by me .

He has been WDL 3 times. I have been to WDW as a teenager, once with family, once with a class, and of course WDL as a kid a handful of times.
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Devon's MAW PTR Departing February 16th!
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Old 09-29-2011, 08:04 PM   #7
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Quote:
Originally Posted by starienite View Post
Devon has been discharged from therapy, but we may have him evaled by NeuroPsych in 2012 (he just about gobbled up all of his coverage for therapy for this year). His impulsiveness is more like, shouting out the answer in class or rushing through homework.

He responds well to joint compression therapy, even now I will give him a once over to settle him. Enjoys squeezy hugs a lot more than before, which is fine by me .

He has been WDL 3 times. I have been to WDW as a teenager, once with family, once with a class, and of course WDL as a kid a handful of times.
IM sounds perfect for him! Joint compressions are very calming for sure!! WOW you guys know the place then!!! lol
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Old 09-30-2011, 04:55 PM   #8
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Hi there.

WOW, what a brave little guy you have! Thanks for sharing his story.
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Old 09-30-2011, 06:50 PM   #9
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Meeting the Wish Grantors

So about 3 months after we got our official letter and Dev got his Make A Wish coloring book we met our Wish Grantors.

They brought a gift for Dev and his sister Cassidy. And some chocolate cake. Kids were officially won over. Give my kids cake and presents and you have friend for life.

Dev got some Transformers.



Cassidy got a Rapunzel doll.



Sorry no pictures of cake ;P. We ate it all up!

Then we got down to the boring paperwork. My dad is coming along (the man was born to be a Papa). He told my mom that there wasn't anyway he would miss it. So he has an upcoming "business" trip to WDW. Our chapter here told me that all my dad needs to do is sign the same forms, pay his own tickets and airfare, food at the parks and he can stay at GKTW with us. Yay!

So only delay is that my dads paperwork was and we had to resend it, but we are the next step now.

This is Dev with his MAW balloons later that night.

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"She's an awesome mouse!" - My daughter said this to my mom after Minnie waved to her.
WDW Wish Trip Febuary 2012
Disneyland July 2013

Devon's MAW PTR Departing February 16th!
The Most Awesome Trip Ever! This is Devon's MAW TR!
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Old 10-01-2011, 01:02 PM   #10
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Subscribing!!
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Old 10-01-2011, 02:22 PM   #11
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Quote:
Originally Posted by billwendy View Post
IM sounds perfect for him! Joint compressions are very calming for sure!! WOW you guys know the place then!!! lol

There was one thing that was so great for him. It was like a swing made from fabric that he could sit or lay in. His OT used it for him once, but he was so calm after, I wanted to take it home and use on the kids.

Funny thing is my mom was trying to talk him into going to WDL and they would save up and come, my sister and her husband and kids, my brother, maybe my other brother and at least his wife (he is in the navy). He was thinking about it for a little bit, and wanted to stay in the GC there. Then he decided that he has been the WDL plenty of times, and so WDW was picked. My mom doesn't fly well so that is why only my dad is tagging along.
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Devon's MAW PTR Departing February 16th!
The Most Awesome Trip Ever! This is Devon's MAW TR!
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Old 10-01-2011, 02:24 PM   #12
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Subscribing!!
Thanks!!
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"She's an awesome mouse!" - My daughter said this to my mom after Minnie waved to her.
WDW Wish Trip Febuary 2012
Disneyland July 2013

Devon's MAW PTR Departing February 16th!
The Most Awesome Trip Ever! This is Devon's MAW TR!
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Old 11-07-2011, 09:10 PM   #13
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Subscribing! what precious and adorable children you have!!!
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Old 11-07-2011, 11:25 PM   #14
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Semidates!

We know that hopefully we will be going in the second half of February. I emailed our wish grantors for a small update. Alison, our grantor, called up today and asked what dates would be best for us. We had originally requested the beginning of February as first choice, but due to work issues, the 2nd half is our now our first choice, January is out and April is moved up to choice #2. So cross your fingers that we get February!
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"She's an awesome mouse!" - My daughter said this to my mom after Minnie waved to her.
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Disneyland July 2013

Devon's MAW PTR Departing February 16th!
The Most Awesome Trip Ever! This is Devon's MAW TR!
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Old 11-07-2011, 11:29 PM   #15
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Subscribing! what precious and adorable children you have!!!
Thanks so much! They are both going to be breaking hearts one day.
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"She's an awesome mouse!" - My daughter said this to my mom after Minnie waved to her.
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Disneyland July 2013

Devon's MAW PTR Departing February 16th!
The Most Awesome Trip Ever! This is Devon's MAW TR!
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