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June
18. 2006
Hi Everybody :o)
We celebrated Devon's 11th birthday yesterday...his birthday was actually
Thursday :o) The day started with us getting up early and Charleen picking
me up at 8 to drive to Green Cove Springs to pick up my "pick up only" ebay
win for devon's birthday...a 4ft from head to toe Bear from Bear in the Big
Blue House :o) Bear is SOOOOOOOOOO cute and squishy/huggable...well worth
the steal I got him for (9$)...I think it probably cost more in gas to go
get him then the purchase price :o) Anyhooooo...we got back to the house
around 12:45 - 1PM...party at 1:30. Donna had come over to help Joe with
Devon and getting ready for the party at 8 AM :o) Joe went and picked up his
cake (Pixar Cars with Mater the Tow Truck as the main charactor on top)
chocolate with whipped cream frosting...YUMMY!!! So....we had mom, Mr.
Albert, Donna, Charleen, Bella, my brother Brett and his wife Alice and
daughter Autumn over for presents, cake and ice cream :o) Devon was SOOOOOOO
excited...he was beside himself :o) Couple of smacks and tripping over
people a time or two and of course he stayed pretty busy arranging people
and then crawling up on them to sit between different pairs of people...but
not too bad I don't think...behaviour wise I mean :o)
 Devon
had a GREAT time!!!! He ate 2 pieces of cake without a breath between...not
much icecream though :o) Kitchen was decorated with Cars stuff...it was
cute!!! Bear is ADORABLE!!!! and even better...Devon LOVES him!!!!!!! We
never know if he'll like something or not....sometimes we're POSITIVE he'll
love something we get for him...we get it home and give it to him and he
doesn't give it a second look!!! Soooo...it's wonderful to see him playing
with his new HUGE pal :o) It's funny watching him try to haul the Bear
around...he's
WAYYYYYYY big...like 4 ft from toe to top of head!! He got a stuffed Mater
(from Cars), a marker drawing set, a red McQueen shirt (from Cars) and a
beige Mater shirt (from Cars), he got like 40$ + Donna gave me 20$ for gas
for getting him to summer rec :o) He got the Doogle movie...which he's
watching right now and I think he likes it???? He also got a new Blue's
Clues DVD called Fred's Birthday (Fred is a dress up paper/felt doll on
Blue's Clues...he's called Fred Felt Friend ) :o) And Nick made him a CD
with some Blackeyed Peas and Sean Paul music on it :o) He ripped open his
presents with Joe only starting it so he could tear off the paper himself
:o)
 And
MAN OH MAN....wait til you see the pics I took of him while we were singing
to him...I swear that's his favorite part of his birthday! He was slamming
his hands on the table drumming in excitement and I think he would have
busted if he'd been grinning and laughing anymore than he was!!!!!
All in all, it was a good....exhausting day :o) I even went and got the usb
cable out of the box my camera came in so I can hopefully figure out how to
download the pictures I took and send them to you all??? Until then....take
care and ALL you dads out there...HAPPY FATHERS DAY!!!!!!!!
Love,
Penny.
Devon
Victor 11 yrs 2 mo
6th grade |
 Update: April 2006
I thought I'd tell ya'll that Devon has started horseback riding on
Saturdays :o) It's with a group called F.A.I.T.H. Riders (stands for
Furthering Abilities In The Handicapable). Today was his 5th time...and it's
FREE!!!...otherwise we wouldn't be able to do it :o) He has ridden a
chestnut/red mare named Sadie once but they prefer to put him on Navy
Boy...a big bay/brown with black mane and tail gelding. The first time,
there was whining...but he got upset when he thought he had to get off...we
were headed back in the direction of the barn...but he perked right back up
when we headed for the trail course instead :o) He gets to ring a bell, pick
toys out of a mailbox and put them in a bucket, pick another toy out of a
bucket and stick it to a velcro target...we walk over poles, do stake
bend...he even gets to trot....his favorite...never fails to elicit giggles
and works like a charm in stopping any whining :o)
The last time he rode the Saturday before last...he started fussing the
minute I put his car harness on him and fussed all the way there...I should
have known he was trying to tell me something. Turns out he was sick...he
started diarrhea and vomiting and fever the next day and was sick the whole
week...I got it on Wednesday and Nick got it Thursday :o( It was the
pits!!!!!
 Today he had a ball....MUCH better than any other time :o) The boy is
fearless...he throws a leg over and rides backwards, sideways...claps his
hands....high fives...doesn't hold on unless I say "HOLD ON!!!! We're gonna
trot!"...And then he grabs hold and bounces like a fool...giggling the whole
time!!! I'll do my best to figure out how to download pics to my computer so
I can email them to everyone :o) I got some cute ones of course :o)
Today he even got to feed one of their pot belly pigs his banana ;o) A
definite bonus as far as Devon AND the pig were concerned!!! Next Saturday
Nick and Joe have an end of year banquet for the scholarship program...it'll
be at Daytona USA at the speedway :o) And that same night we have a FAITH
Riders awards banquet :o) OH yeah! And Nick's biology project/experiment got
picked for the science fair and it won an honorable mention...he got a 98%
on it :o) WOOHOO!!!!
Gotta go get rid of this headache...we're going salt water fishing
today!!!!!!!! WOOHOOO I hardly ever get to go fishing...wish me luck!!!
Maybe we'll catch dinner???
Love,
Penny...loving & devoted wife to Joe, the best husband in the world...mom to
Nick (15 yrs old...lover of Fishing, Dragons, Turtles, Metroid Prime,
RollerCoasters, Chocolate Icecream w/ Ovaltine sprinkles, Devon (10
yrs...lover of Barney, Blue, Nappy ol' Bear w/dreadlocks, Pooh, Elmo, & food
in general. Full trisomy 13 w/balanced translocation 5 and 13) , and Trooper
the Wonder Dog...our 9 ? year old yellow lab adopted from FL Lab Rescue
12/13/02 :o)
See our 3 boys on FL Lab Rescue's website at:
http://www.labradorrescue.net/success/index.html (Look for the name
Trooper)
Here is Devon's story :o)
My name is Penny and I'm wife to Joe and mom to Nicholas (14 yrs), and Devon
(9 yrs 6 months old). Devon has Full Trisomy 13 w/ BALANCED translocation 5
and 13. Basically what that means is that Devon has my balanced
translocation plus a full extra copy of the 13th chromosome...making his a
full T13. How bout that for an interesting karyotype???? I am a "balanced"
(no comments from those who know me please:>) translocation carrier...hence
the t13. Nicholas has been tested also and I'm very pleased to report he is
not a carrier! Devon was born June 15, 1995. I'd been in labor all night the
previous night...the whole time thinking, "Oh cool, I don't have to go to
work today!!!". Well...the pains started petering out around 5 am...so I
grumbled as I got ready for work.
I called the doctor at around 9 am and
told them about my labor all night and they wanted me to come to the office
to be checked...my due date was only a week away. It was kind of funny
because all morning at work (after I chanced to mention that I'd been
in labor all night and that the pains were only coming every 30-45 minutes
at this point), my boss and my co-worker (who is a retired EMT) were
watching me as if they expected the baby to fall out of me while I was
walking or something!!!! Gary...my co-worker (the retired EMT) even went out
to the trunk of his car and checked his OB kit that he'd started keeping in
there during my 7 th month :o)
It turned out I had protein in my urine, my BP was 180/110 (AAAAHHHHHGGGGG!!!),
and I had an adema on my calf the size of a football!
OOps...didn't even notice that! I was shocked when the doctor said, "Well
young lady, this is what we're gonna do...you're going to call your husband,
drive across the street get yourself admitted and I'm going to induce
you...you're going to have that baby today!!". While I was prepared for
going overdue again (10 days
with our first son)...I was not prepared to go early or on time! I got
really scared because I'd had a really bad feeling throughout my pregnancy
even though everything appeared normal...I felt like the only way to keep my
baby safe was to keep him inside me. As it turned out it was a good thing I
was induced...I believe Devon would have died inutero...not because of
anything genetic but because he had the cord wrapped very snugly around his
forearm and his neck! When he was born he had it all wrapped around him like
he'd been taking macrame' lessons in there and he was also holding the lead
wires that were going inside me...he was holding them so tightly in his fist
that the doctor had to pry it out of his hand! :o)
He was 19" long and weighed 6 pounds 8 oz. His apgar scores were 9 and
10....and the doctor said he looked great....still...I had a bad feeling all
was not well. He had a small hole in his lung and had to be put in an O2
hood because of his accelerated respiration and O2 sats...nothing serious
though...they said lots of babies have a hole like that when they're born
but it usually closes itself within 24 hours. His genitals did not look
quite right either...he was retracted...also very common I was told. Later
that night I was in the nursery with him to reassure myself and saw the back
of his throat when he was crying. It looked funny to me and I called a nurse
over and she in turn called a doctor over. He told me that I'd found a small
cleft in the soft palate of his mouth. I was hysterical...now I wish that
were all it had been...cleft palate??? what a breeze!! They said they wanted
to do a renal ultrasound because a midline defect such as a cleft palate can
sometimes point to other things...that was
done the next morning.
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9 1/2 yrs old |
Our whole world started to fall apart that day when
the doctor came in a very upset saying Devon had something very wrong with
his kidneys and he would need to go to another hospital where they could
look further. I assumed he meant in a day or
two...NOT....within 45 minutes I had picked a hospital, a helicopter was
there, my husband and Nicholas were there, my family was all there and the
flight nurses prepared Devon for his helicopter ride to Shands Teaching
Hospital in Gainesville. It was the most helpless feeling in my entire
life!!!
Nicholas held onto my leg and assured me that he would make sure Devon would
be ok...all I could do was stand there numbly and cry and let my mom, dad
and Joe hug me. He arrived a few hours before we did and when we got there
his nurse told us they'd taken him off the oxygen...the hole had closed by
itself! YEAH!!!!! More good news the next day (a Saturday)...the ultrasound
lied...his kidneys were fine...he was taking nourishment, maintaining his
temp and gaining weight so after 4 days we took him home... he looked
great!!!
We went back for the consult 2 days after we got home and then our world
really fell apart! The doctor and Lisa (our genetic counselor) told us all
about T13...none of it good...we were told that he most likely would not
survive his first year, and would be profoundly retarded. He gave us a
referral for an MRI for his brain and an echocardiogram for his heart
because 80-90% of t13 babies have brain and heart anomalies. They seemed
real impressed with his hands (I thought that was kinda weird at the
time)...apparently most T13 babies have clenched fists, Devon did not. We
were told about scalp ulcers, blindness, deafness, seizures, extra fingers
and toes, cleft lip and palate, and a host of other internal problems! In
addition, we were told Devon would most likely never sit, roll over, crawl,
walk, play with toys or communicate. So as not to disappoint anyone, we
heard those two hated phrases...
1) "failure to thrive" and the ever popular
2) "incompatible with life".
Oh how I hate those 2 phrases!!! Ranks right up there with the word
"retarded"...hate that one too!!!
Now let me tell you about our reality. When we were told he would not be
able to play...we responded by looking for toys to grab his attention...some
we hit it lucky with and some we didn't. We offered him toys and teased and
played with him until he DID respond! At 3 months he was belly laughing and
giggling and smiling the most beautiful smile I had ever seen!!!
Devon does not have heart or brain anomalies,
while he is blind in his right eye...he sees quite well out of his left, he
was not hearing impaired at birth but in my opinion, because of undetected
fluid build up in both ears for his first 9 months (when he had tubes put in
and his cleft repaired), he is now moderate/mild on one side and
moderate/severe on the other. He wears hearing aids and an FM system in 4th
grade.. yep that's right I said 4th GRADE!!! He normally loves school...but
this year has been rough...long story short...he was being neglected and
injured...I took pictures and kept notes/records and reported it and the
teacher resigned...a new teacher is supposed to start here anytime....so
hopefully he'll again enjoy school? Rides the bus...and adores his aid and
the driver :o) He can go up and down the steps by himself with someone
spotting....although he very much enjoys making me work to get him to go up
the steps in the mornings :O( He's not using his chair at school or on the
bus at
all now! By the way...we're selling it so that we can buy Devon some
recreational equipment :o) It's a Zippy/Quickie tilt in space wheelchair (in
excellent condition), and it's midnight metallic purple (very dark with
metal flake that catches the sun) and has lavender/grayish upholstery :o)
Just email me if anyone's interested :o)
We still use his stroller when we go out most of the time...for our own
piece of mind and for our sanity :o) He had one foot turned at birth (club
foot???...no one ever used that term, but I think that's what it was??
...who knows...rocker bottom???)...it pretty much fixed itself early on,
probably because of all the early intervention! He has no arch and has
UCBL's (splints) for both feet...although at present he doesn't need them.
He has 11 sets of ribs instead of 12 (just a weird little quirky thing...not
a problem). He has incomplete transpalmer creases....couldn't prove it by
me, also very common in the general population. Lisa, our genetics counselor
has incomplete transpalmer creases:o) They say his ears are low
set...again...couldn't prove it by me :o) I mentioned that to Dr Carey in
Rochester and he measured and said that no his ears are not lowset...but
with his high forehead it gives that illusion :o) He also has capillary
hemangiomas (sp?) basically these are "butterfly kisses" or "angel wings"
...or birth marks on his head and forehead. The one set of "wings" on his
forehead have lightened up with time but still get bright purple when he's
hot or mad or crying. Kind of like a built in mood ring :o) He was low tone
well...actually mixed high and low for a long time...now however his
therapist says he's NORMAL TONE!!!! YEEEEHAAAAAAAHHHHHHHH!!!! He does
however, have low joint tone...makes them sort of "click" real easily. He's
been sitting since he was 28 months...unassisted, cruising furniture and
wall walking and crawling since 29 months...and is currently walking totally
unassisted!! He used to use a wheelchair (midnight metallic purple with
lavender/gray upholstery)...we only use a stroller now when we go to stores
or Sea World or something :o) It's a very snazzy Convaid Cruiser...Blue
Plaid and folds up like a big umbrella stroller :o) Noone told our little
stinky boy about the failure to thrive thing...he weighs 68 pounds and is
50" tall now!!!!
He has Dysphagia (a swallow disorder that causes
him to have an uncoordinated swallow, and aspirates regularly). Intensive
speech therapy has helped a lot and he can now eat PBJ's, breaded fish
filets, pizza, brownies, cookies and alot of normal foods like pancakes and
cereal and toast and potpies...still have to be careful with meats and
harder veggies though. Whatever he aspirates he purges on his own...he's
never had pneumonia of any kind! He does however have Asthma....it causes a
lot of pneumonia-like symptoms at times but is currently under control with
one maintenance spacer treatment a day (Flovent). He hasn't had a flare-up
in a LOOONNNNNGGGG time!!!
Devon's eyes seem to be his "genetic grab bag".
He has Microcornea, Microopthalmia, bilateral colobomas, retinal dysplasia
(incomplete retina-rt eye)...basically what that means is shallow orbits and
small eyeballs (right is smaller than the left). The colobomas, because of
where they are, make it so he has no lower field of vision. He is also being
followed because of cataracts in both eyes...he's had them for about 5 1/2
years now and so far are not a problem. Glaucoma is also a possibility for
the future...but we'll take it a day at a time! :o) He's been wearing some
very smart looking glasses since November 1999 now and doing super with
them!! A PS...since late 2003...Devon no longer needs glasses...his vision
has improved...his astigmatism and farsightedness have both improved.
Devon was rolling around all the way from 6
months until he started crawling...fast little sucker too! He's currently at
about the 24 - 36 month level physical/motor skills-wise and 24-36 month
socially/cognitively . He can sign "more", "eat", "hi" and, "drink"...he
says "mama" and "baba" and understands several words, phrases, and signs. He
is also now learning to use a touch screen at home and an Intellikeys at
school...and also PECS (Picture Exchange Communication System)...he gives me
a picture of cookies when he wants them and a picture of a drink when he's
thirsty :o)
He sleeps in a a Vail 1000 bed now (we just bought a used
one...well the Knights of Columbus did :o)... Presently, (since he's been on Trazodone and even moreso since we got the bed just before Christmas 2004)
he's doing MUCH better with his sleep patterns. The kitchen is also gated
and the bathroom doors are shut all the time...have to keep an eye on him
24/7 as he now turns lights on and off...on and off...on and off (get the
picture?)...and he can now open doors :o( Devon is also potty training and
doing very well (it's been a work in progress for a looonnnnnngggg
time)...I'm noticing him staying dry for much longer periods of time and we
now have a voice switch on his potty chair so that he can call me when he
goes to sit on the potty:o) He hits the switch when he goes to sit down on
it and I hear "I need the Potty" and then I can run to him and pull his
britches down....forgot to mention...when he goes to sit on the potty to go,
he doesn't yet know how to pull his own pants down :o) Oh well...details
details...no one's perfect :o)
His main mode of communication is PECS
(Picture Exchange Communication System). For instance...if he wants cookies
he gives me a picture of cookies...picture of cup of juice for juice...
picture of a bottle of milk for a bottle of milk... etc He also has a very
direct approach to things...he selects the video he wants to watch and
brings it to us...or if his "eat" PEC isn't available he brings me a spoon
:o) So you see there's ALOT going on up there in that noodle of his !!!!!!
ALL of those things we were told he would never do...we encouraged him to do
anyway..if he had not been able to do them after trying and trying then we
would have been ok with that...but Devon is a very determined little man and
does not accept defeat easily. To date...I have not known him to give up on
anything yet. Things may take him longer to
learn...but he DOES learn!
We know that Devon could and in all probability
will die while he's young (although we pray daily that we will be graced
with his physical presence for alot of years to come)....for no good reason
even, by that I mean that even though he has no real life threatening
concerns (with the possible exception of asthma, dysphagia (swallow disorder
that causes silent aspiration, and increased sensitivity to insect
bites/stings). But we enjoy "pert near" every minute we have with
him....leaving out those times I want to choke him...like when he gets up to
party 2-3 times per night...or when I 'm scared to death when he's sick. I
love him more than I ever thought possible and will let go someday when I'm
forced to...I hope I can at least... not sure if I'll be able to or not! Too
painful to think about. although I still do. We are so grateful for the time
we have with him and I wouldn't trade him for the world!! I'd be happy to
answer whatever I can for any who might have ????'s
Penny
My email address is
pvictor@cfl.rr.com
 
|
Click
here for Oct 2005 article about
Devon & his family.
  |
SOFT
Devon has Full T 13 w/BALANCED
translocation 5 and 13...he's now 9 yrs 5 months old :o) He weighs 68 pounds and
is a little over 4 ft tall. Devon is an amazing little man...he's in the 4th
grade (Multi Varied Exceptionalities), he's thriving, he's happy, smart and he
has a wicked sense of humor :o) I'm Penny and my husband (Joe) and I live with
our 14 yr old son (Nicholas) and Devon. Please feel free to
read Devon's/our story if you'd like to know more about him.
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