Re: re white-water rafting/trampoline

[Guest guest]

Hate to rain on this but!

Not so sure we can tell you it's okay. ALL Achons have spinal issues and many

have instability in the neck area and foramen magnum area which is small in many

of us.

A whiplash or jerk can cause serious permanent damage.

Talk to a Doctor who has read your child's scans and images. If not get a CT

scan and x-rays.

Not trying to scare but I can't sit back and watch a potential accident.

An experienced Orthopedic surgeon or Neurosurgen can tell you.

One that has worked on LP's

[Guest guest]

I had two as well on my Bike , and like you said, we have to live and enjoy

life. I wanted t thank Casey for reminding me of th Denver Conference rafting

trip.

I remember doing a mild one but couldn't recall where or with whom I shared the

trip

That was before my cervical diagnosis was discovered.

Wouldn't do it now.

Tony

On Aug 11, 2011, at 8:24 PM, Rickerruth@... wrote:

> I'm an achon, I've had four concussions in my life, three as a child (one

severe -flying over bike handlebars), two mild -falling off bike and tripping

down steps; and one mild concussion as an adult -sitting on floor at LPA

convention and ave sized guy fell on top of me. I've never been injured doing

anything risky. OK, so I've been lucky. When I was a kid we didn't wear bike

helmets. The bike gave me such independence as a kid though, it was worth the

injuries. The other two incidents weren't really preventable, like Ellen falling

in her house.

Tony Soares

tonysoares.com

[Guest guest]

I love Wikipedia. I thought there would be some definition on the grades of

rafting. Here you go:

http://en.wikipedia.org/wiki/Rafting#Grades_of_white_water

I would say this is a good resource to bring to a dwarfism specialist and ask

him/her. I personally would love to try rafting as a life goal/bucket list, but

I'm probably too chicken. And already having some stenosis issues, I would

consider probably something else.

In the POLP Group, there was a question about indoor parachuting. I

chimed in to suggest it wouldn't be a good idea because of the head jerk.

Again, our foramen magnums are very tight and tend to have issues there and the

cervical spine itself. The parent that asked the question has a child who has

already had 2 decompression surgeries by the age of 4. Now, why risk more

possible surgeries at such an early age? I think even just the thought of

sending a AH 4 yo. into indoor parachuting is scary. They don't have the

maturity to understand how to maneuver their body.

Live life to the fullest, but with caution, I say. Think things through.

-Ellen

[Guest guest]

I loved Ruth's response and agree with it.

One thing I'd like remind everyone, is that the person in question going on the

trip is a 20 year old young man.

He's not a child, he can make his own decision. His Mom was merely posing the

question to us, on his behalf (I'm assuming) to gain some insight.

Yes, there have been many many LP's who have done white water rafting, up to and

including, the rapids. Many of them were seated in the middle, as opposed to

being on the edge, stradling the raft.

I, like many adult LP's, have had concussions in childhood. I even had wicked

bad whiplash after taking a nasty spill snowboarding 4 years ago.

I would never give up snowboarding because I " might " one time hurt myself bad.

I'd rather be a super happy 80 year old senior with tons of stories to share of

aweosme things I did, from my wheelchair in a nursing home.

Than a senior with no stories, standing in my room in that same nursing home.

>

>

>

> > I'm an achon, I've had four concussions in my

> life, three as a child (one severe -flying over bike

> handlebars), two mild -falling off bike and tripping down

> steps; and one mild concussion as an adult -sitting on floor

> at LPA convention and ave sized guy fell on top of me.

> I've never been injured doing anything risky. OK, so

> I've been lucky. When I was a kid we didn't wear

> bike helmets. The bike gave me such independence as a kid

> though, it was worth the injuries. The other two incidents

> weren't really preventable, like Ellen falling in her

> house.

>

>

>

> Tony Soares

>

>

>

> tonysoares.com

>

>

>

>

[Guest guest]

Yeah well better hope you make it to 80

You could be paralyzed from the neck down at 25 too

I never said to do nothing or even mentioned snowboarding

It's all a risk and it's fine

Nobody has a bad response but to say it's not a risk as you imply

is foolish

Tony Soares

www.tonysoares.com

On Aug 12, 2011, at 2:11 PM, Crumly <sauceykitty@...> wrote:

> I loved Ruth's response and agree with it.

>

> One thing I'd like remind everyone, is that the person in question going on

the trip is a 20 year old young man.

> He's not a child, he can make his own decision. His Mom was merely posing the

question to us, on his behalf (I'm assuming) to gain some insight.

>

> Yes, there have been many many LP's who have done white water rafting, up to

and including, the rapids. Many of them were seated in the middle, as opposed to

being on the edge, stradling the raft.

>

> I, like many adult LP's, have had concussions in childhood. I even had wicked

bad whiplash after taking a nasty spill snowboarding 4 years ago.

> I would never give up snowboarding because I " might " one time hurt myself bad.

>

> I'd rather be a super happy 80 year old senior with tons of stories to share

of aweosme things I did, from my wheelchair in a nursing home.

> Than a senior with no stories, standing in my room in that same nursing home.

>

>

>

>

> >

> >

> >

> > > I'm an achon, I've had four concussions in my

> > life, three as a child (one severe -flying over bike

> > handlebars), two mild -falling off bike and tripping down

> > steps; and one mild concussion as an adult -sitting on floor

> > at LPA convention and ave sized guy fell on top of me.

> > I've never been injured doing anything risky. OK, so

> > I've been lucky. When I was a kid we didn't wear

> > bike helmets. The bike gave me such independence as a kid

> > though, it was worth the injuries. The other two incidents

> > weren't really preventable, like Ellen falling in her

> > house.

> >

> >

> >

> > Tony Soares

> >

> >

> >

> > tonysoares.com

> >

> >

> >

> >

[Guest guest]

All I was saying is get checked out 1st

You could easily be 25 parylized in a nursing home

With no stories to tell because you have a feeding tube in your mouth

Tony Soares

www.tonysoares.com

On Aug 12, 2011, at 2:11 PM, Crumly <sauceykitty@...> wrote:

> I loved Ruth's response and agree with it.

>

> One thing I'd like remind everyone, is that the person in question going on

the trip is a 20 year old young man.

> He's not a child, he can make his own decision. His Mom was merely posing the

question to us, on his behalf (I'm assuming) to gain some insight.

>

> Yes, there have been many many LP's who have done white water rafting, up to

and including, the rapids. Many of them were seated in the middle, as opposed to

being on the edge, stradling the raft.

>

> I, like many adult LP's, have had concussions in childhood. I even had wicked

bad whiplash after taking a nasty spill snowboarding 4 years ago.

> I would never give up snowboarding because I " might " one time hurt myself bad.

>

> I'd rather be a super happy 80 year old senior with tons of stories to share

of aweosme things I did, from my wheelchair in a nursing home.

> Than a senior with no stories, standing in my room in that same nursing home.

>

>

>

>

> >

> >

> >

> > > I'm an achon, I've had four concussions in my

> > life, three as a child (one severe -flying over bike

> > handlebars), two mild -falling off bike and tripping down

> > steps; and one mild concussion as an adult -sitting on floor

> > at LPA convention and ave sized guy fell on top of me.

> > I've never been injured doing anything risky. OK, so

> > I've been lucky. When I was a kid we didn't wear

> > bike helmets. The bike gave me such independence as a kid

> > though, it was worth the injuries. The other two incidents

> > weren't really preventable, like Ellen falling in her

> > house.

> >

> >

> >

> > Tony Soares

> >

> >

> >

> > tonysoares.com

> >

> >

> >

> >

[Guest guest]

Trampoline related:

Interestingly enough in this 'new tv show' video (link below, it's been making

the FB rounds) which is about a large family, all with dwarfism, you will see

two of the kids joyfully bouncing on a trampoline at around the 2 min mark.

http://www.youtube.com/watch?v=enwJqanaFY0 & feature=youtu.be

This reminds me of the son of one of my employees who has asthma which flairs up

every once in a while. The scary type of flair up. They've made the decision to

be pro-active about treating it, but not letting it keep him from certain

activities that may make other cringe. It is all about choices. I'm 55 and from

a generation that wasn't as 'dwarfism issues enlightened' as we are today and

yet we survived. We all have to decide how full we want to live our lives and

like Jen said, what stories do we want to tell when we're sitting in our front

porch rockers later in life.

>

> I realize this was posted 5 days ago, don't know when the trip was going to

be... my apologies

>

> I agree with Casey that there's risk in many activities and sometimes one

needs to balance the medical risks and social benefits.

>

> I would consult with your son's dwarfism specialist and see if there are

specific cautions for him.

>

> I'm an achon, I've had four concussions in my life, three as a child (one

severe -flying over bike handlebars), two mild -falling off bike and tripping

down steps; and one mild concussion as an adult -sitting on floor at LPA

convention and ave sized guy fell on top of me. I've never been injured doing

anything risky. OK, so I've been lucky. When I was a kid we didn't wear bike

helmets. The bike gave me such independence as a kid though, it was worth the

injuries. The other two incidents weren't really preventable, like Ellen

falling in her house.

>

> Yes, we are more susceptible or at risk, so even household accidents are more

dangerous for us, but I wouldn't automatically restrict a kid's activities,

beyond contact sports, without consulting a dwarfism specialist that knows the

kid's own situation.

>

> The thought of my also achon son going on middle school ski trips terrified

me, but I let him go. A year later he needed cervical and lumbar decompression

and fusion. Dr. Mackenzie sees no correlation. Now three years after surgery,

my son is cleared for anything except contact sports and lifting stuff over 35

lbs. Currently he plays basketball with friends and goes sculling on the

River.

>

> Several years ago I went to an orthopedics workshop at a national LPA

conference. A parent asked about trampolines. One ortho, I forget his name,

said no, they're bad, but acknowledged most orthos would say that in general.

Dr. Ain said the same thing, but also said you have to balance. He acknowledged

that his daughters and wife had badgered him to get a trampoline and he

compromised and they got a mini-trampoline, which are by definition small, they

have less bounce and are way safer in many ways for any human, than large

backyard trampolines. He acknowledges there's a risk (he has a daughter who is

achon.) but made this informed decision.

>

> It's like car seats and kids sitting in back seat. I know there are state

laws we have to deal with sometimes, that don't have exceptions. I moved my son

out of booster seat and up to the front seat when he was maybe 12, I forget, but

I justified it that I couldn't talk with him easily over the back of the

frontseat, not seeing him, because I'm supposed to be facing forward as driver

of course, these are the only real conversations parents have with kids

sometimes, and we were more likely to get into car accident (and him hurt)

because of the distraction of being in separate seats like that. Yes, I can

rationalize anything.

>

> Good luck.

>

>

> Sat Aug 6, 2011 4:38 pm (PDT)

>

>

> Hi folks! My 20 year old achon son has an opportunity to go white water

rafting. I know there are some no-no's with achons, such as avoiding

trampolines. Does anyone have any recommendations regarding white water rafting?

> Thanks,

> Kirsi

>

>

>

>

>

[Guest guest]

Wow. I actually met Amber and Trent about 15 years ago when they were dating.

We were friends for a short time. Nice to see they're doing well.

I think what some LPs here are trying to say is that live your life to the

fullest, just be aware of what the risks and rewards are. Even getting pregnant

can have risks for both an LP mom. Would we change it? Probably not.

- Ellen