[tri-med] Devon Medication and Augmentative Speech equipment Update

Hi Everyone :o)
 

Devon had been on the 5mg Adderall XR (the lowest dosage) for a month and we
had seen no side effects but no change either.so when it was time for a
refill I took him to the doctors and opted to up the dosage to 10mg. On
12/16/06 we started Devon on his increased dosage of Adderall XR. The
written messages from the teacher this past week have been better :o) It
does NOT make him sleepy at all AND he's still the same happy, silly, impish
little brat that he is :o) The notes from school say that he has been
listening better, sitting down and participating when they go over their
planners, he has chosen a book and sat while they read it to him.and even
once with a classmate reading it to him :o) This weekend maybe WE'LL get to
see some of it?? By the time he gets home from school the medication's
effective time is about up. However we have a pretty routine schedule when
he gets home every day and as long as we stick to the schedule he's pretty
good :o) For instance.when I get home from work, he will go get the "potty"
PEC and when I take him to the bathroom he will start taking his clothes off
on the way to the bathroom and when he's sitting on the toilet he waves at
the bath tub. This is his way of saying it's time for his bath.because
that's the schedule. After he eats his dinner he immediately heads to the
bathroom and opens the drawer and brings one of us the toothpaste.OBVIOUSLY
this means it's time to brush his teeth. We know it's almost time for him to
go to sleep when he goes and kneels on the couch and looks over the back of
it so he can look at his reflection in the inset mirror in the wall about
7ft away :o) Usually..not long after, he comes and gets one of us and takes
us to the gate to the kitchen and waves at the refrigerator signifying it's
time for his nightly DanActiv . PRESTO!....time for bed :o) The problem is
that weekends around here are pretty much fly by the seat of our pants.no
set schedule. I'm in the process of trying to make some PECS so I can make a
different schedule with the weekend changing schedules.

I have been in contact with Darcy and her husband Don about a touch screen
monitor for Devon. However.just today I found a 17"  ELO  CRT touch screen
monitor. It's used but in good working order (no scratches or dings) and has
software and the beginning bid is 50$ plus 25$ for shipping. We almost have
enough for that in Devon's piggy bank without having to wait for letters and
funding and all that stuff. I like the sleek flat panel monitor that Darcy's
husband sells.but for Devon.the BIG clunky heavy CRT kind of monitor might
be better because he can't turn it over and ding the screen like he has on
occasion with my LCD monitor that I have now. Of course I'm a little
hesitant because it's used.BUT on the other hand if it doesn't last that
long it's not that much money lost right??? I'm REALLY leaning to putting a
bid on this used one. PLUS.we found a really neat site that has some really
great stuff to use for PECS (I've picked out about 40$ worth of stuff) .PLUS
a software program for making our own PECS for 50$. They sent me a catalogue
of sorts.literature I guess (their actual catalogue hasn't been completed
for the new year yet) when I wrote to them :o) Of course if we use the $ set
aside for the monitor.we have to start over on the saving for the other
stuff.but still.VERY tempting :o) Then all we need to get funding for will
be the Tech Talk :o) And I will be getting the letter I need from the doctor
when I take Devon back to the doctor in 3 weeks and start the ball rolling
for funding for that goodie :o)

All in all.I think these are all positive things :o) Say prayers we make the
right decisions with regard to Devon's medication and the equipment we need
for him :o) Thanks :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/

"Normal people worry me"

 



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

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