[tri-med] Victor Update

Hello Everyone ;o)

Well.we're all hangin; in there here in the Victor Household :o) Joe and I
are doing pretty good :o) Keeping very busy.and actually feel like we're
getting things accomplished around here, slow but sure :o) Just things like
sorting coupons, pictures.filing, getting thank yous out in the mail. Joe's
working on home repairs and feeling pretty good about things himself even
though he says he's behind "schedule" :o) I took my mid-term/essay yesterday
:o) I was a little distracted for Devon related reasons so I was worried
about how I did. I got an 89 on my mid-term and a 10 on my essay for a total
of 99. Ms. Roberts says I got the highest score in the AM class :o)  I
didn't realize the 2 scores would be combined but I'm glad they were. I'm
still disappointed about my score on the test part because I know I could
have done better.but Hey.I guess I just need to accept it and be grateful I
didn't do worse. Sounds kind of stupid to be complaining about an 89.because
it's still good.but like I said, I could have done better.

 

The distracted thing I referred to occurred day before. Devon has been
getting a little better with his bowel habits although we learned a valuable
lesson. The doctor told me to use both Miralax and Dulcolax
suppositories.but still I was reluctant. So.thinking I was being brilliant.I
gave him the Miralax Sunday afternoon. Nothing happened.so I figured since
his abdomen was nice soft and squishy, that there was nothing to flush out.
To be sure on Monday AM before the bus I used the Dulcolax. The idea was for
him go before the bus came. Nothing happened again. So.I was a little
concerned. Apparently the 2 meds met and then at 10AM he had a major
diarrhea incident and I had to go get him :o( So.I took him back to the
doctor and he agreed with me that it was the 2 meds and suggested that we
only use the meds maybe every 3rd day. So far so good :o) BUT..we wouldn't
want things to go TOO smoothly. He got off the bus the day before yesterday
and Nick and I had driven up right behind Devon's bus having gone to pick up
a book Nick had ordered at the book store. We noticed Joe had a much harder
time getting Devon down the stairs on the bus. He was leaning A LOT on Joe.
When I got in the driveway, I noticed the reason behind it was that he could
not put any weight on his right foot :o( We got him in the house and took
his shoes off and sure enough his right foot looked weird and swollen :o(
Off he and I went to the ER where we were taken back and Xrayed in a very
reasonable amount of time. I studied a little while there but I knew I had
to finish my half finished essay when we got home and I had kind of lost my
focus at that point :o( Good news is NO fracture. But bad news is he has a
grade 2 sprain :o( Good news is the doctor said he would probably be able to
bear some weight by the next day but to keep it wrapped for support. He
suggested icing it and keeping it elevated..HAH HAH HAH! Yeah right! How do
we do THAT??!!!! Fortunately he's been very good and adaptive with his
behavior :o) We decided that if he could bear weight yesterday morning, he
could go to school. He did pretty well but of course as the day wore on his
ankle/foot got more swollen and was hurting more. So we gave him some pain
reliever and unwrapped his ankle for the evening/night. He could still bear
weight though even still.so this is a good thing :o) Just going to take time
to heal :o)

 

We had an amazing thing happen too :o) A couple amazing things really. #1 I
had applied for food stamps back 2 months ago. I was so excited when we got
a card in the mail last week. But too soon the wind went right out of my
sails. It only had 55$ on it. And that's how much it said we were getting
per month. Hated to look a gift horse in the mouth but 55$ won't go far :o(
So.beginning of this week I went to the food stamp office and FINALLY spoke
to a human.2 actually. Hopefully it will be taken care of soon and we will
have a little more help with groceries? We'll see. This wasn't the REALLY
wonderful stuff.at least not yet :o) The amazing thing is that we've had a
few benefactors that have materialized at just the exact moment we needed
them. We've had a little help come through with groceries 3 weeks in a row
:o) There have been a couple other really great things too! I mentioned not
long ago that we had been saving for a trampoline (after the aborted idea of
a slide).but that the saving had come to a standstill when I lost my job.
Well.a VERY sweet and generous person/family came to us and told us that
they would like to put in the rest of the $ we needed to get Devon his
trampoline.can you believe that??? We gratefully accepted their help :o) It
never ceases to amaze me how these kinds of things happen to us at the exact
time we need the help an a boost in faith :o) I ordered Devon's trampoline
at the end of last week and it is here :o) Joe and I are working on putting
it together :o) Of course with his ankle and foot, it will be a little
longer before he can start bouncing.I can't wait though :o) We'll finally
have something he likes doing to have fun outside :o) We just gotta find
some kind of steps (like maybe a wooden mounting block kind of thing they
use to get up on a horse??) so we can get Devon up in to it and us too
without risk of falling.

 

Nick has a different kind of day today at school. They have no classes.but a
group project sort of thing that has to do with testing out of IB.he'll get
points towards his IB diploma :o) He also talked to the lady at the Museum
of Florida Art in DeLand and filled out a volunteer application. Hopefully
he'll be able to knock out his Creative volunteer hours helping kids with
art classes and make and take events that the museum sponsors. He'll most
likely be volunteering at the art festival as well. AND he'll have one of
his pictures on display there as well ;o) He still needs to ask how to get
his transcripts to send to colleges he applies to. He's filling out an
application to Embry Riddle.but he's also talking about maybe taking a year
off before starting school and working. I'm not sure he can do that and keep
his scholarship.something else he needs to ask about. But I'm determined
HE'S gotta find these things out himself. He's doing it though.slowly but
surely :o) I just really feel overwhelmed and lost with the whole process of
preparing and applying for college.I feel like we're flying blind :o(

 

Love,

Penny...loving & devoted wife to Joe, the best husband in the world...mom to
Nick (17 yrs old...lover of Fishing, Dragons, Turtles, WofWC,
RollerCoasters, Chocolate Icecream w/ Ovaltine sprinkles, Devon (13
yrs...lover of ROCK-n-ROLL, 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 12? year old yellow lab & Smoochie, our SILLY acting &
GOOFY looking 1 yr old Basset/Dachshound/Jack Russell mix :o)

Please visit the webpage my wonderful friend Karen made for me on our
trisomy listserv at:

http://www.trisomyonline.org/victor.html      

AND...visit Noah's Never Ending Rainbow at:
<http://www.noahsneverendingrainbow.org/> www.noahsneverendingrainbow.org 

AND...http://livingwithtrisomy13.org/album9.htm

AND http://web.coehs.siu.edu/Grants/TRIS/

AND my new slideshow at: 

http://www.onetruemedia.com/shared?p=3e291611cb644c422ff6bb
<http://www.onetruemedia.com/shared?p=3e291611cb644c422ff6bb&skin_id=402&utm
_source=otm&utm_medium=text_url>
&skin_id=402&utm_source=otm&utm_medium=text_url

"Faith sees the invisible, believes the incredible & receives the
impossible"

 



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

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