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 Senekot 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 tofind 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.

 

 

 

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August 16, 2001- January 12, 2005

This website is funded in loving memory of Jason S. by his mother Kammy

The information on this site is provided by families, caregivers, and professionals who are or have been caring for a child with Hydranencephaly.

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