“Grandmoma’s Little Angel”
God sent our family a very special Blessing on August 7, 2004. Her name is Eevie Nichole Grove. Eevie weighed 2 lbs. 8 oz. and was 14 1/2 inches long. She was born at Banner Medical Hospital in Mesa, AZ. With Eevie being so small, she needed special medical attention. She needed the help of a ventilator, temporary feeding tube, and close monitoring. She was taken care of by the NICU Unit there at Banner Hospital for around 2 months until they were able to transport her closer to home. During the stay at Banner, she was diagnosed with Aicardi Syndrom. The Doctors explained the condition and the symtoms we should be aware of in the future. Eevie developed fluid on her brain with the enlarged ventrical. At that point, she was still to small for a shunt, so the Doctors implanted a ‘Resivoure’ to be able to drain the fluid. It wasn’t long before a complication arose with the Resivoure, so they decided to go ahead with the shunt.She done extreemly well with the shunt to be so small. When the Doctors felt she was strong enough to transport, they made arrangements for her to move to Jackson-Madison General Hospital in Jackson, TN. Eevie spent a week at the Jackson Hospital while she learned to take a bottle and continued to grow strong enough to come home.
Finally, the day everyone had been waiting for, Eevie came home to her loving family. And what a welcome home it was. Family and loved ones swarmed the house to see our Special Little Angel.
Over the next few months, Eevie grew and gained enough strength to ween herself off the oxygen. As the days and weeks went by, we were able to use the monitors less until she only needed them at night. During the days, she always had her family watching her every move. We just couldn’t keep our eyes off of her, she was so special.
At around the age of 5 months, Eevie began to have seizures. We made an appointment with a Nuerologist, Dr. Ronald Lynn in Memphis, TN. Dr. Lynn ran an EEG test. He decided to admitt Eevie into ‘LaBonhuer Childrens Hospital’ for a 24 hour observation. He also wanted a CT Scan to make sure the shunt was working properly. The results of the CT Scan were good, the shunt was working properly. But, the 24 hour observation of the seizures turned into 2 1/2 months. She was having from 20 to 25 seizures a day, and had to be monitored very closely. The Doctors and Nurses recorded every seizure. Dr. Lynn tried every medication, dosage, and combination he could safely use for an Angel her age and size. With each adjustment, Eevie’s seizures would decrease for a day or two, then they would start to increase again. Dr. Lynn met with Casondra (Eevie’s mother) and I one day to explain what possible options were left to help control the seizures. He told us of two other medications had been used on seizure patients in the past, but he did not recommend those medications due to the very high risk of other complications. He also talked about a VNS (Vagus Nerve Stimulator). He explained that the generator part of the VNS would be placed just under her skin and two wires would connect to the nerve which helped to control brain activity. Although, extremely rare in someone under the age of 4, we decided the VNS was the better choice for Eevie. After the VNS was placed and adjustments were made to the right level of activity, with the help of her medication Eevie’s seizures began to decrease down to 3 to 7 seizure a day.
While at LaBonhuer, Eevie recieved many test. She had EEG’s and CT Scans to help monitor her progress of the seizures. She had an upper GI and Swallow Test to determine why she was having trouble keeping her medication down. This resulted in her recieving a Feeding Tube. She had Vision Test which determined that she had indentions on the retina of her eyes. The Doctors said that she would have spots in her vision due to the retina disorder. She recieved many blood test to determine the levels of her harmones, blood levels, soduim levels, and thyroid, plus others to be able to see if any other conditions may arrise.
Eevie was released from LaBonhuer on April 1, 2005.
Within a couple of weeks, Eevie was rushed to Jackson-Madison Co. Hospital once again. She had become very conjested and had serious choking spells. She was admitted and spent a week in NICU there. Eevie recovered from her bout with the conjestion and choking, and was released to come home.
On July 15, 2005, God called Eevie home to be with him. He relieved her of all her pain and suffering. Although our arms are empty, our hearts are feeled with many special memories. We know our ‘Special Little Angel’ here on earth is now a ‘Special Little Angel’ in Heaven.
We’ll Never Say Goodbye
I cannot see you with my eyes
Or hear you with my ears.
But thoughts of you are with me still
And often dry my tears.
You whisper in the rustling leaves
That linger in the fall;
And in the gentle evening breeze,
I’m sure I hear you call.
A part of you remains with me
That none an take away.
It gives me strength to carry on
At dawning of new day.
I think of happy times we shared
And the I softly sigh.
But this I know…….We’ll meet again
And never say goodbye.
To our
‘SPECIAL LITTLE ANGEL’
EEVIE NICHOLE
We Love You!
We Miss You!
We’ll be at home in
Heaven
with you some glorious day
to never say
Goodbye.
I would like to extend a Special Thank You to:
The Aicardi Foundation for their information and continued support.
Banner Medical Hospital and NICU for letting God work through you to save Eevie’s life at birth
LaBonhuer Children’s Medical Hospital — for making Eevie’s stay more comfortable for her
Eevie’s Doctors — for letting God work through you to help treat her condition
The Nurses of 5 South — who gave Eevie such special care and love, an extended family
Jackson-Madison Co. General Hospital — for there part in Eevie’s care
All the Family, Friends, and Loved one who Prayed for Eevie
Brenda and Megan Cadwell who became good friends and a good source of support
May God Bless All the Children with Aicardi Syndrome
