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

What a great day!  :)

Jennifer, mom to Arwen, 6; Elanor (t18), 4; caregiver to Joe (cerebral palsy 
& spastic displaysia), 25 & Eric, 18; and wife to Andrew
----- Original Message ----- 
From: "Penny Victor" <pvictor@xxxxxxxxxxxx>
To: <tri-family@xxxxxxxxxxxxx>
Cc: <tri-med@xxxxxxxxxxxxx>
Sent: Monday, November 15, 2004 5:16 PM
Subject: [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, w
> hich 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
>
> 


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

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