[tri-med] A new chapter in the Devon Chronicles :o)

Hi :o)
There are a few things in the works in ours/Devon's lives that bare mentioning 
:o) I believe this post qualifies to go on both family and med lists? Some of 
you...most of you...may remember our quest for the Vail 1000 Bed for 
Devon...road block upon road block...and then as if by magic when I was nearing 
the place where I might scream...A man emailed our listserv not long ago with a 
subject line of "Vail Bed Update". Not sure how he came across my quest...but 
he has a Vail 1000 bed for us to buy :o) At the moment we are waiting on a 
shipping quote...and I'm sure we are waiting for them to get a bed for their 
little girl to sleep in when they ship the Vail bed to us...after all...the 
sweetheart needs something suitable to sleep in too :o) It's not etched in 
stone yet...meaning we don't actually HAVE the bed yet...but it feels good :o) 
As soon as we have the shipping quote, Bill, with the Knights of Columbus will 
get with the treasurer and get a cashiers check  for the total, which we will 
send return receipt or registered mail...and then...we wait for the bed's 
arrival :o)
Something really neat, in addition to that, is that we will have some monies 
left over for some recreational equipment for Devon...read FUN STUFF!!!! I have 
a swing and frame all picked out and I have been looking for a good deal on a 
used adapted trike/tricycle. I found a used Rifton trike on ebay this weekend 
for 200$...I asked a few questions...but I believe the people that were selling 
it knew nothing about it. I got some measurements and decided it would fit 
Devon...and I bid on it...but was outbid. Strangley...this did not upset me and 
I decided to do a search and see if I could find an adapted trike for a 
reasonable amount of money that I could feel better about. I found a company 
based in New York called Workmans Trading Corp...they make 3 wheel trikes for 
children and adults as well as trikes adapted for special needs. I scanned the 
prices and saw that they were much more reasonable...and then I looked more 
closely...and found a trike called a WTX Wide Track Trike...for a base price of 
$299.00. It has fat wheebarrow tires, a wide padded seat, it's bright safety 
yellow and it's for individuals 10 and up into adulthood. I called today and 
asked if they could put pedals on with toeclips (a cap like thing to stop his 
foot from coming out of/off of the pedal...YES they can for $14.00. I also 
asked if they could put a back rest on it...YES they can for $45.00. Shipping 
will only be $45.00...no tax. The grand total will be $403.00! The used Rifton 
on ebay (not nearly as well constructed or stable/sturdy in my opinion) sold 
for $315.00 + it would have cost $65.00 + $25.00 for shipping and packaging 
it...and it would not have been done professionally. I Ordered the new one for 
$403.00 and emailed Bill with the details. The K of C will cut a check and mail 
it directly so that the money does not have to pass through my hands and 
therefore I do not have to report it to Social Security...and Devon will not 
have his check docked :o)

Lastly...Devon was sitting next to Joe tonight on the couch and he kept doing 
this thing with his mouth that looked like he was chewing on his tongue. Joe 
looked and did not find anything in his mouth that he was chewing on...but 
still Devon was gnawing on something. I finally went over and looked for 
myself...FIRST...I discovered a brand new tooth next to the peg tooth (I call 
it a pointy fang ) on the bottom. He has always had only 3 small teeth on the 
bottom middle...with lots of room between them...(He DOES have his molars...but 
I'm referring to the place on the bottom in the middle where there are normally 
4 little teeth nice and neat and tight in a row). Right after I told Joe he had 
a brand new tooth (I assume it's a permanent tooth even though he never had a 
baby tooth there)...I also found what he'd been gnawing on!!! His lower 
bicuspid was hanging on by a thread...as soon as I saw it...I popped it right 
out and found that he has a new one coming up right under it :o) Our little boy 
is growing up :o)
Not a big deal in the big scheme of things...but for some reason I was excited 
about it and wanted to tell you all :o)
Love, 
Penny...loving and devoted wife to Joe, the best husband in the world...mom to 
Nick (13 yrs old...lover of Dragons, Turtles, Yu Gi Oh, RollerCoasters, 
Chocolate Icecream with Ovaltine sprinkles, Devon (9 yrs...lover of Barney, 
Blue, Bear in the Big Blue House, Elmo, Stuart Little, Teletubbies and food in 
general...Full trisomy 13 w/balanced translocation 5 and 13) , and Trooper the 
Wonder Dog...our 6 or 7 year old male 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.htm 
AND...Devon's moment of glory in Exceptional Parent Magazine...
http://www.eparent.com/familiarfaces/ffaces_4_01.htm
AND...see our 3 handsome boys on FL Lab Rescue's website at:
http://www.labradorrescue.net/success/index.html
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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