[tri-med] Re: any ideas/Penny

The respite program Soleah went to for years had Vail beds and we tried to get 
one forever but insurance wouldn't pay for it becuase it was a safety issue vs. 
health.  She does fine in a full bed now but she used to get up at all hours of 
the night too and wander . . . poop and play, eat plants, break glass . . . one 
night she somehow managed to pick up our house phone and call my cell phone in 
the middle of the night.  I woke up from a sound sleep and thought someone was 
in the house breathing on the other end.  I freaked out.  Anyway, I thought the 
vail bed was great.  I guess you could roll up some blankets or towels and 
stuff them into the sides for extra safety.
plugginalongpv <plugginalongpv@xxxxxxxxxxxxx> wrote:  Hi Laurie :O)
Yes...I know the FDA shut them down because the beds were deemed unsafe. A
Vail Bed is NOT for everyone. It's not for younger children and it's not for
children or adults who burrow. What can happen is if your child is too young
or not strong and/or a burrower...they can get trapped in a situation they
cannot get out of and they can suffocate. Some people think we're horrible
for having a bed like this. Some people look at the beds as a place to
"keep" their child when they can't watch them...that's not what they're
for...they're for a safe place to sleep. The reason why we got one was
because Devon had started getting out of bed since he was like 3 yrs old (so
we started gating his room and thought the problem was solved)...when he got
older he started taking things off the walls and we found Devon with a huge
smile on his face standing in the midst of broken glass from some Disney
pictures he took down. We took things off the walls at that point...but then
he started climbing and storming the gate...the final straw was when he
started banging and slapping the windows. He also learned how to stand up on
the bed and jump so he could pull down the dream catcher we had over his
bed. He also learned how to open doors. He has ZERO sense of personal safety
:o( Devon LOVES his bed and he actually ALWAYS opens his eyes when he crawls
up into his bed (with me guiding him)...just to look around to be sure that
he's in his bed...he feels very secure in there. We also have a monitor in
his room so that we can hear him. We can hear him when he wakes up in the
morning and starts doing his "chief chanting" and motor boating. We can hear
him worrying his block (the white one is his favorite and he will search it
out even in the dark...and he finds it every time!!). Someday I'd like to be
able to get a video monitor so that we could actually see him. On the
weekends when we tend to sleep a little later (Joe usually gets up around
6-7 and lets me sleep in til 8). But Devon wakes at his usual 4:30-5:30 or
6...he's quite content to sit or lay there quietly and play until one of us
comes in to take his black out window covers down and unzip him and change
him and start the day. Obviously, a parent would have to carefully weigh the
pros and cons. Devon is safer in his bed than without it...but we still
worry and always will. We worry about fires because BOTH our boys are on the
other side of the house. Not that Devon would know what to do if there were
a fire even if he weren't in his bed...but Nick knows what to do. Even still
I live in fear that I wouldn't be able to get to them :O( But bleeding out
because he's put a hand/arm through the window or breaking his neck or arm
or leg because he's fallen off one of the 2 pieces of furniture left in his
room (the bed and a chest of drawers) isn't an attractive option either :o(
So...there you have our reasoning...faulty or otherwise...it's what works
best for our family :o) If the parent you speak of is not comfortable with
the idea...he may not ever get comfortable with it?? But there are still
beds out there. Ours was used and the man found us through the internet when
he googled Vail Bed. He saw my posts on the list serv about our ongoing
problems finding one for Devon that we could afford (direct from the factory
they were 6500$...through medical supply places they were 8100$). We got our
for 1000$ + 600$ freight. And we paid a guy from our DME company 50$ to help
us put it together one Saturday :o)

Love,
Penny...loving & devoted wife to Joe, the best husband in the world...mom to
Nick (16 yrs old...lover of Fishing, Dragons, Turtles, Blue Collar Comedy
Tour, RollerCoasters, Chocolate Icecream w/ Ovaltine sprinkles, Devon (11
yrs...lover of Barney, Blue, Nappy ol' Bear w/dreadlocks, Elmo, & food in
general. Full trisomy 13 w/balanced translocation 5 and 13) , and Trooper
the Wonder Dog...our 10? year old yellow lab adopted from FL Lab Rescue
12/13/02 :o) Please visit the webpage my wonderful friend Karen made for me
on our trisomy listserv at:
http://www.trisomyonline.org/victor.html 
AND...Devon's moment of glory in Exceptional Parent Magazine...
http://www.eparent.com/familiarfaces/ffaces_4_01.htm
AND...see our Trooper on FL Lab Rescue's website at:
http://www.labradorrescue.net/success/index.html (Look for the name Trooper)
AND :o) http://livingwithtrisomy13.org/album9.htm
AND http://web.coehs.siu.edu/Grants/TRIS/
"Those who matter don't judge me .... those who judge me don't matter."


Building ___ooOOoo__ Rainbows
www.trisomyonline.org
Families Helping Families On-line




                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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