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
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
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
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
hospital for 2 days right before Thanksgiving for IV's. We could see
she would be dehydrated by the time she got over the nausea and the
were a necessity. She lost some weight during that time, but we're
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
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
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
just like 'normal' kids, which is so wonderful. Her CP holds her back
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
she does very well. Her head control is outstanding. Her hands are
lot of the time, but she can use them when she wants to play with switch
or play with her favorite toy, her sparkly pocketbook. She loves to
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
She's still only on Glaucoma drops and one tsp of Senekot everyday.
eating very well with her split-nipple bottles and a spoon. We have to
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
She's under the care of a General Ped that is specially trained in
Kids' " needs. We only have to have regular checkups.
Carly still has private PT, OT and Speech, but receives these services
school, also. Because of her delicate nature and her risk of silent
aspiration, Charlene attends school with Carly. Her mom has had a long,
battle with the school district. I won't go into it, but fighting for
right school setting for Carly has been a nightmare. The schedule is
11-2:00 and she's (here I go again acting like the school-offered
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
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
first graders. Charlene is there all the time, which is absolutely