Tiara's Story
written by mom Tammela
Tiara was born a normal healthy child. She
was a happy baby. She had chronic ear infections including 6 sets of tubes
before age 6. She was very friendly and such a people lover. She loved
preschool and then kindergarten. Besides ear infections she was healthy and
normal.
In December of 2002 she started dropping weight like crazy but I just
thought she was going through a growing time. January she was drinking water
like no tomorrow and going potty all the time and started changing from a
sweet little angel to something with attitude.
January 21st, 2003, I took Tiara to the doctor thinking she had a urine
infection and after the blood work came back we were whisked away to the
hospital for a 7 day stay after being diagnosed with Diabetes. She was
borderline comatose when we entered the hospital. She was in ICU for 2 days
until they finally got her blood sugars under some kind of control. Tiara
took charge after that with her Diabetes. She checks her own blood at least
5 times daily and does her own shots, at least 5 a day. To this day we still
have not been able to get the diabetes totally under control. She is a very
high runner.
Summer of 2004 she woke one morning and the left side of her was temporarily
paralyzed so off to the hospital and 2 days later she was diagnosed with
Todd's Paralysis. There is no cure or even medication for this and it can
happen at a moment's notice. She may not ever recover from it. This is the
scariest diagnosis to me.
August 2004, Tiara started having seizures with normal to high blood sugar
levels, which means they were not low blood sugar level ones and so when she
had her first Grand Mal seizure we were whisked again to the hospital and
after 1 semi reg EEG and 1 normal EEG she was diagnosed with Epilepsy. She
has been on 5 medications so far and not one has seemed to do the trick. She
is currently on Topamax.
Tiara went from a happy girl with lots of friends to a very shy quiet no
friends girl. She does a lot of things in the home for fear of seizures. She
struggles everyday because she just wants to be normal. She does well in
school. For the past 2 winters she has spent a lot of days in the hospital
for flu or colds or seizures but we have been very blessed that she has not
been to one yet this winter.
Winter 2004 Tiara was granted her wish from Make A Wish and we went to
Disney World. Her wish was to spend her birthday with Winnie the Pooh and
she did. It was a magical awesome time.
Spring 2005 to Summer 2006 she was put on a bunch of different seizure
medications sometimes up to 1,000mg at a time and it soon became clear that
the side effects were way worse then dealing with the seizures so I stopped
the medications and have dealt with the seizures alone ever since.
She has had a few since then and seems to have more during stressful times
in her life and during sick times too. She continues to get regular EEG's
bi-monthly and they are still not normal.
Her diabetes is still not normal. She runs very high and when she gets even
a common cold she sometimes ends up in the hospital because her KeyTones run
very high.
We are praying that she is able to get on the pump this up coming summer so
maybe that well help her level out.
Abilities:
See: Yes.
Hear: Yes.
Talk: Yes.
Walk: Yes.
Read: Yes.
Use hands: Yes.
Siblings:
sister RayLee, age 10
Child's Interests:
Tiara likes sewing, pre-teen girl stuff like nails and light make up and
posters and other girl stuff. Loves fairies.
Sibling's Interests:
RayLee likes tropical fish, dolphins, soccer, reading and outside games.
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