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From the beginning...
Daniella was conceived November of 98. During that time we
were living in Bronx, NY. Our apartment wasn't heated very well. My
one year old, Evangelos, and I were very sick with a cold. Then I thought
it was because of the apartment being so cold. Now I believe that is
when we both had been infected with CMV.
January of 99 Evangelos and I moved to Topeka,
KS. During the whole pregnancy it didn't feel right. I did
have morning sickness in the beginning, but I never felt Daniella move
around or kick me the way Evangelos did.
I told the doctor my worries and during my
pregnancy I had 3 sonograms. None of them detected anything
wrong. I kept telling my doctor I know something is not
right. In June of 99 I went to the hospital to have stress tests
done. That is when they discovered Daniella's heart rate was
dropping and if they didn't do an emergency c-section she wouldn't make
it. Sunday morning, the 13th of June, at 9 am I went into
surgery. At birth Daniella weighed 2lbs 4oz. Of course she was
rushed to NICU and stayed there for the first 2 months of her life.
A few weeks after she was born a ct-scan was done, it showed severe brain
damage. Also the blood and urine tested positive for CMV. Our
pediatrician told me to make out a living will and funeral arrangements
because her chances of living were very low.
For two years now we have had so many obstacles we've
had to overcome and some that we haven't yet. During this time Daniella
has been diagnosed with severe seizure disorders (1 year seizure free and
no longer on Phenobarbital), microcephally, CP, cortical vision impairment,
profound hearing loss, kidkart, AFO's, diagnosed at a 2-4 month old level, fed via g-tube,
and recently (Oct. 2) had a fundoplication done due to reflux. Daniella can roll over to her stomach but not back over
to her back yet. Also doesn't have much head support. In October 2001 a doctor
from Children's Mercy decided baclofen would be good to use to try and
relax her muscles. So far it has relaxed Daniella a little. She's
still very tense in her legs. My precious little girl is able to
drink some liquids from a tippy cup. At a year and a half years old
Daniella was starting to eat #2 baby foods. Now she is eating about
2 oz. of yogurt or pudding for 2-3 of her feedings each day. A
tremendous accomplishment!!!!
Everything happens for a reason. My family is taking one day at a
time. I believe it is best for us to be happy and enjoy the time we
have together, rather than worry ourselves with what the future will
bring.
Please feel free
to email us if you have any questions about Daniella or CMV. Knowledge is
power!
This candle burns for all the CMV kids that
are no longer with us.
CMV National Disease Registry
CMV Support
Group
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