re: need help- mito spec or our neuro---- deb

June 6, 2004

DEB,

THANKS SO MUCH FOR RESPONDING TO ME! I REALLY APPRECIATE IT. I WISH

WE WERE CLOSER. YOU ARE A GOOD WAYS FROM ME.

KARLEE'S SEIZURES ARE THE WORST THING RIGHT NOW. WE GO TO HER NEURO

THIS TUESDAY AND I AM GOING TO MENTION NEUROTIN. I'LL SEE WHAT HE

THINKS. DO YOU FEEL LIKE THE DISEASE IS WHAT MAKES HER SEIZURES

UNCONTROLLABLE?? SHE HAS LOTS OF MOUTH MOVEMENTS AND JERKING ARMS AND

LEGS AND HER LITTLE EYES DO WEIRD THINGS. I FEEL SO SORRY FOR HER AND

IT JUST EATS ME ALIVE THAT I CANT HELP HER GET RID OF IT. SHE IS THE

BEST BABY. SHE NEVER, I MEAN NEVER CRIES. SHE LOST HER VISION IN

MARCH AND SHE DOESNT SEEM SCARED AT ALL. SHE LOVES MUSIC, REALLY

LIKES OLD TIME GOSPEL MUSIC, SHE CAN KEEP BEAT, SHE AMAZES ME SO MUCH.

I HOPE YOU DONT MIND ME ASKING ABOUT ANDREW. I HAVE SEEN HIS SITE AND

IT IS PRECIOUS. HOW DID HE DO BEFORE HE PAST AWAY? ALL OF KARLEE'S

LAB WORK HAVE BEEN NEGATIVE OR NORMAL. WAS ANY OF HIS ABNORMAL? AND

WHAT SPEC DID YOU SEE?

I HAVE REALLY LEARNED ALOT FROM THIS GROUP. ALOT MORE FROM HERE THAN

AT MY DOCTOR APPTS. CAN YOU EXPLAIN TO ME WHY THE SUN AND HEAT IS

SOOOO HARD ON KARLEE? OUR FAMILY LOVES TO BE OUTSIDE AND ITS PRETTY

WARM HERE, EVERYTIME I TAKE HER OUTSIDE SHE SEEMS TO CRASH. I DONT

UNDERSTAND HOW IT CAN DO THAT TO HER. WE ARE GOING TO

ST.PETERSBURG,FL THIS FRIDAY THE 11TH, MY MOMA IS GOING WITH US SO I

CAN GET OUT WITH KAITLIN AND KARSON, I FEEL SO TORN. I GUESS WE WILL

TAKE KARLEE OUT WHEN IT COOLS DOWN IN THE EVENING. DO YOU HAVE ANY

SUGGESTIONS ON HOW I CAN MAKE HER MORE COMFORTABLE IN THE HEAT. SHE

LOVES THE OCEAN, OR I SHOULD SAY SHE LOVED IT LAST SEPT 03, THINGS

HAVE CHANGED SO MUCH FOR HER SINCE THAT TIME. HER PED WAS SAYING SHE

HAD SENSORY INTEGRATION AND DEVELOPMENTAL DELAY. I NEVER EVER THOUGHT

IT WOULD BE SOMETHING SO TERRIBLE AS THIS. SORRY FOR RAMBLIN'.

THANKS AGAIN!!!

DAVONNE

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