My Current Medical Condition/Seizures/Meds
I am usually a pretty healthy little girl. In May 2001, I had a g-tube put in since I aspirate. This has made everyone’s life so much easier! In August 2001, I had the VNS implanted. It has helped my seizures tremendously. About a month after it was put in, I went for 5 1/2 weeks without a seizure. In Sept. 2001, I got really, really sick. It took the doctors 2 weeks to discover that I had tons of gall stones and I had to have my gall bladder removed. A week into my hospital stay, my little sister, Bonnie, was born. It was a crazy September! While they were removing my gall bladder, the also did a nissen fundoplication, a pylora plasty, and put in a new g-tube. I still have about 7-10 seizures per day. Somtimes they are only 1 jerkers, while others may last 20 minutes before my parents give me Diastat. I seem to go through cycles with my seizures. Sometimes they’re great, others they are not. Right now we’re in a bad cycle, so we’re adding Keppra to my Lamictal. I also take baclofen for spasticity, miralax for constipation, and a decongestant/antihistamine for occasional allergies.
A Little Bit About Me
Look What I Can Do:
I can use a jelly bean switch to activate cause and effect switch toys (tape player, computer, etc.) I vocalize to let everyone know if I’m happy to mad. I cry when I’m sad or hurt. I have some head control — when I really want to. I play possum really well when I want to get out doing things (in fact, when I started school in Feb., they tried to evaluate me for over 30 days and I slept almost the entire time. The day after they wrote my IEP, I was wide awake for the rest of the school year!).
My Favorite Things Are:
Cuddling with Mommy and Daddy, swimming, my doggie kissing me, my little sister, my OT, Miss Erin and PT, Miss Shannon, when my Aunt Shel comes over to babysit so my parents will get out of my hair!
My Least Favorite Things Are:
When my sister pulls my g-tube completely out of my tummy (2x now — you’d think my parents would learn!!!); When my sister yells too loud/often; Baths; My hair being brushed (it gets very tangled from my headrest — it also is quite unruly at times — in fact, one of my nicknames is “Kramer”)
Toys That I Find Stimulating and Learn From Are:
Anything with lights and music; cause and effect computer games; scanning activities
Therapies I Receive:
OT and swin therapy this summer; PT, OT, speech, vision during the school year.
I Currently Attend This School/Daycare:
The Buice Center; In the fall, my mommy is going back to teaching, and I’ll get to go to her school — Lake Windward Elementary — she’ll be a great bus driver!
Goals I Am Working Towards:
Making choices between 2 or 3 activities; using a switch and big mack consistently; still working on complete head control
A Typical Day for Me Includes:
Getting breakfast in bed about 6am (ahh–the wonders of a g-tube and feeding pump!); getting on the bus at 7am; school for the summer is from 8:30-11:30 (during the school year it was 7:45-1:45), home about noon when I eat again, then I hang out and play with my mommy and sister, or we run errands, or I have therapy. When Daddy gets home I play with him and Bonnie, and then before bed I snuggle with mom or dad for a little bit. My bed time varies greatly, but I can fall asleep anywhere, and at night it’s usually my daddy’s arms!
Something Else I Would Like to Add:
I’m a very happy and content little girl. I know that I am truly loved by all of my family! They wouldn’t change me one bit — especially my curly, red hair!