Amazing video...

Check it out.

 http://www.godvine.com/Man-Barely-Able-to-Stand-on-his-Own-Does-the-Unthinkable-Amazing-1476.html

2012 Angioma Alliance Patient and Family Conference

Don't forget! 

June 22-23rd. Check it out here and here. 

2012 Annual CCM Scientific Meeting

Angioma Alliance is hosting the 8th annual CCM scientific meeting to be held Nov 15-16, 2012.

Experts in the field will gather and discuss the latest advances. Stay tuned for more info.

Climbing the K2

Today my son BBB is graduating high school.

It's taken almost 21 years to get here, and I didn't think we'd ever arrive. Certainly not in one piece.

Seventeen-ish years ago, we'd sat down with our town's preschool special education director. She explained to us, two parents stuck in this brand new messed up world, what lay in front of us-the IEPs, behavior plans, case managers, and inclusion- and how it would all lead, one day, to one goal: graduation.

It was a bit like plopping two barefoot, supply-less, and naked hiking amateurs at the base of the K2 and saying I'll see you on the other side.



Yeah. Right.

Other side.

Never gonna happen, was our immediate thought.

@%$#*!, was our second thought. And third.

And twenty-fourth.

Little did we know there were people-teachers and administrators and doctors and counselors-stationed along the way, waiting for us. Little did we know they'd drag us, pull us, push us, and even roll us toward that summit and back down the mountain. Little did we know they'd give us the tools we needed to get us through it.

But they did, they got us through it. We climbed the K2.

Of course, this finish line merely marks our approach to a new mountain. This one, transitioning to the adult world and independence, is Mount Everest, the highest in the world. And I'm not convinced the trails will be dotted with helping hands this time around. Or, at least, not so many. That's just the harsh reality of funding and community services for those with disabilities.



It is what it is, I suppose. And what it is is a celebration, today. It's an ending, and a new beginnning, and a time to give thanks and gratitude and eat donuts.

Yes.

We made it. My son made it.

Life is very good today.

Of Cat and Scans

BBB wanted to know two things: what was wrong with him and how they got cats to scan. Explaining the cats was the easy part.

     “Carefully,” my husband, said. “The trick is you have to hold the cat just so, and then run them quickly across the scanner.”  He sighed deeply.  “It’s not easy, though. They don’t cooperate a lot of the time.”

     “Are you lying?”

     Hubby shook his head, looking affronted. “Me? Are you calling me a liar?”

     I watched BBB frown, unsure whether to believe his dad yet wanting to believe him so badly, for how cool would that be? But I could see he was also latching onto the more important but hidden message. Brain damage or no, he understands far more than we'd like.

      “Then what’s wrong with me now that you need to scan cats?”

     “If you want to know what’s wrong, then you need to talk to the big guy.” Hubby pointed to our neurologist, who stands all of five feet tall and was staring intently at his computer screen. It was a good way to pass the buck.

     “Is that true, Dr. xxx?” BBB asked.

     “Mostly. I find if you sweet talk them a little first, they’re more likely to cooperate.”

     Dr. xxx is our thirteenth neurologist; I like to think this makes him our lucky charm. He thinks it makes him all that’s left. He’s lying, of course, not just about being the only doctor left, but the cats. They don’t really scan cats at Children’s Hospital, just brains and other myriad body parts. We don’t tell our son that, though. He’s also more cooperative about tests if he thinks it’s true.

    “See this here,” he said, pointing to the computer screen. “There’s a new lesion.”

     We craned forward to peer at the screen. Our son ignored him, instead trying to pull the chair out from under the doctor with his foot. 

      “Or actually,” Dr. xxx continued, oblivious as he tapped the mouse and pulled up another image, “it’s a tiny, old one that’s grown.” He pointed at the MRI scan with his pen. “Right there.”

     This is bad news. My son’s head is riddled with brain lesions. As long as they sit and behave, as long as they act nice and quiet and don’t bleed, we can manage. And for several years now, they’ve done just that, been good little lesions. But even though my son has passed the teen years, his lesions are now rebelling.

     “It makes sense, the new seizure activity.” He shrugged. “A lesion like that could definitely cause irritation.”

     And it has, for now I’m irritated. Fourteen years have passed since my son’s first surgery. Fourteen years since the worst of the seizures, when he would wet his pants and fall to the ground. Fourteen years since they scooped out the lesion and part of his frontal lobe, leaving a burden no child should have to face.

     Our neurosurgeon had been telling us for years now that if we can only get our son through puberty (the most dangerous time for lesions) then they usually go quiet. The most precarious time was over; BBB is about to turn twenty-one in five months. We were there, we'd stumbled across the finish line, and now this had happened. The lesions have sucker-punched us. So yes, I’m irritated.

     “It’s not fair,” I whispered.

     Dr. Megerian shrugged again, leaning back in his chair and crossing him arms. “Just imagine how the cats feel.”

     

Happy Donut Day!!!!

Even though every day is Donut Day here at AS, National Donut Day is on the first Friday of June each year, succeeding the Donut Day event created by the Salvation Army in 1938 to honor the women who served donuts to soldiers during World War I. 

Bet you didn't know that.

So what does this mean?

And then...Eat a donut, or six, and show your patriotism!! It's your obligation as an American!!!

Go, go, go!!!