[tri-med] Re: Looking for others with experience with Trisomy 13 children

Hi and welcome to you both!!
I'm Penny and I live in Florida with my husband Joe and our 2 boys...Nick
(almost 14yrs) and Devon (9yrs). Devon's an amazing little man and a little
bit later (after our home visit with Devon's med waiver coordinator is done)
I'll give you more details about him than you ever wanted to know :o) Ask
anything...we're an open and very wordy book :o)

I have good friends in Atlantic City...Nynell and Renny Langford. They had a
little girl named Mariah who passed away a year ago at 4 yrs of age...she
had T13. Renny and Nynell are really wonderful people and they still wanna
help any families they can....just to talk or whatever :o) Let me know if
you'd like to get in touch with Nynell and I'll give you her phone number
offlist.

Devon has a number of eye issues...not that anyone can tell to watch him :o)
He has micro opthalmia and micro cornea (small eyeballs and shallow
orbits...rt eye is smaller than the left)...bilateral colobomas (in the
lower part of his iris, so he has no lower field of vision)....cataracts
(haven't changed in like 7 yrs and are not interfering with his central
vision)...retinal dysplagia (incomplete retina)...which makes him blind in
his right eye)...and he has a cyst on his optic nerve in the blind eye
(present from birth). He also had a cleft palate when he was born that was
repaired at 9 months and tubes put in at the same time. The tubes caused
perforations in his eardrums...but we're thinking about having them patched
now and an ABR done...because we know he hears much better than standard
tests indicate. He has dysphagia...uncoordinated swallow that causes
aspiration...he had intensive oral motor therapy for about a year and we use
Thick it (a thickener) in all of his liquids. Eating and drinking are 2 of
his most favorite things to do :o) The boy is a HORSE!!! As I mentioned
earlier...he has asthma...but it's well maintained and not a problem. His
brain is structurally correct according to an MRI...and his heart is also
fine. He's been sitting since he was 28 months...cruising at 29
months...crawling at 30 months and walking independantly since 3 1/2 yrs. He
communicates using PECS (Picture Exchange Communication System) and signs
and gestures and objects. ALL of these things were things we were told he
would never do...he was to be profoundly retarded and was not supposed to
function like he does. He IS probably considered moderately/severely
retarded...but I have a really hard time thinking of him in those terms...I
just see....Devon. To me, he's like a really large 3 yr old with a wicked
sense of humor :o) I have the best of both worlds...in a lot of ways I still
have my baby...but I have a growing and developing little boy who's VERY
bright too :o) I'll take that :o) Fell free to ask me anything...
Take Care :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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