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

I love hearing that life is a bit easier for you after all of the 
hurricanes.  Ruth is cutting 4 teeth right now...2 on top and 2 on 
the bottom.  She has been doing lots of tongue thrusting.
I'd love to see a photo of Devon on his trike when it comes!

Rebecca, mom to Kashi (18) and Ruth (full t-13, 
3/25/04), "stepmom" to Josh (33) and Joe's main squeeze



---------- Original Message ----------------------------------
From: "Penny Victor" <pvictor@xxxxxxxxxxxx>
Reply-To: tri-med@xxxxxxxxxxxxx
Date:  Mon, 15 Nov 2004 19:16:07 -0500

>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
>
>
 

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

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