Carly's Story
Carly was sitting in her Great-grandfather's
lap (when this picture was taken) and was eating up all that attention. She's
shy and flirty around men. (Her haircut is new and we're training it.
It usually looks prettier than this)
She's very alert and acts like any other child. She tries so hard to talk
and you can ask her any question and get a response. Although she's
non-verbal except for 'yea' and 'un-uh', she's restricted by not being able
to talk and has limited use of her extremities. We'll be needing to
consider Botox and Phenol soon, but are putting it off because it's been such a
rough procedure at the hospital it's done in.
On her yearly Evaluation for speech last month, her speech therapist gave her a
major compliment. Carly had gotten a 18-24 month on the cognitive grade
last year, but she moved her on up to a 5 year old. She's really so smart
that even we, her caregivers since birth, are amazed several times a day at her
progress.
She and her Mom have a unique relationship. If Carly doesn't like what her
Mom is asking her to do (such as change her shirt or come to her from me), Carly
says, "Un-uh!" and bucks back pulling her arms up and back.
Charlene gives her 'the eye' and Carly just melts with a smile and hangs
her head (which in turn, melts me!!).
Just like any other kid...
The glasses she's wearing are her new ones. The doctor lowered the
strength in her bad eye, the left one. And, she increased the strength in
her good eye. She has glaucoma in her left eye, which is kept in check by an
eyedrop every night. Her eyes don't show up good in pictures because her good
eye is smaller than her bad eye and cameras point out the difference. But,
when you look at her you can't tell the difference.
I can't believe my sister caught Carly with her right hand down. It's her
'protection' and she rarely has it down when there's a camera around. (One
of our battles!) When you start trying to get a picture, that hand flies up to
her eye and she hides behind it. It's so funny!
Her favorite word is a real Southern Belle
... "Hey!" (which she uses appropriately with a nice
smile). She gets a lot of attention with that one!
She's been blessed with natural beauty, porcelain skin and a flawless smile.
She's easy to look at! (I catch myself just starring at her all the
time, you know how Grandma's are :)
This story was written by Carly's grandmother in November 2000
Update on Carly: December 2001
She's healthy
all the time, with the exception of the terrible stomach virus
that had our whole family (except her mom) very sick. She would have been
able to handle it on her own, but this virus made us throw up and very
nauseated for several days, so she wasn't able to eat. She had to be in
the
hospital for 2 days right before Thanksgiving for IV's. We could see that
she would be dehydrated by the time she got over the nausea and the fluids
were a necessity. She lost some weight during that time, but we're
fattening
her up with chicken pot pies and ice-cream.....which she loves.
She'll be 7 years old in February and we are amazed that life with her has
been so easy and so much fun.
She's very quick to respond to our comments and understands what we say.
She's only saying "uh-ugh" for no and "yea" for yes, but
knows how to get
what she wants. She has several names for family members that she makes
consistently, but I'd never be able to spell them. She interacts with us
all
just like 'normal' kids, which is so wonderful. Her CP holds
her back a
lot, though. We just consider that she's about 4 years old mentally and
about 6 months old physically.
She's not able to hold herself up on her own so we hold her chest steady and
she does very well. Her head control is outstanding. Her hands are
closed a
lot of the time, but she can use them when she wants to play with switch toys
or play with her favorite toy, her sparkly pocketbook. She loves to
'play'
the piano and 'sing', too. She's very flexible when relaxed and kicks her legs
and plays all the time. She's strong and is hard to hold when she gets
excited. We usually have to warn people that want to hold her that she's
like holding a bucking bronco and to be careful of sudden moves.
She's still only on Glaucoma drops and one tsp of Senokot everyday. She's
eating very well with her split-nipple bottles and a spoon. We have to be
careful of her choking, but she handles moist, soft foods just fine.
Charlene and I are still the only ones that feed her. The need to teach
other people how to do it hasn't come up. Hopefully, we'll never have to
find out.
She's under the care of a General Ped that is specially trained in "Special
Kids' " needs. We only have to have regular checkups.
Carly still has private PT, OT and Speech, but receives these services from
school, also. Because of her delicate nature and her risk of silent
aspiration, Charlene attends school with Carly. Her mom has had a long,
hard
battle with the school district. I won't go into it, but fighting for the
right school setting for Carly has been a nightmare. The schedule is MWF
11-2:00 and she's (here I go again acting like the school-offered services
measure up to a hill of beans) treated individually by their therapists.
Charlene had to call another IEP meeting and be there with her requests and
have her 'homework' done, Now Carly is going to music and art with the
kindergarten classes and she also goes to reading time in the library with
first graders. Charlene is there all the time, which is absolutely
necessary.
