Gabrielle and Duff arrived safely in NYC Wednesday afternoon. They were admitted into the hospital by dinner time and had all of the electrodes cemented on before bedtime. For the first time Gabrielle really disliked this process.
Thursday they were able to capture 8 seizures all of which presented the same clinically as well as electrically. They are coming from the parasagittal region which is basically over the midline region of the skull. The doctors are unsure of how to interpet this data. They are seeing seizure waves in the left hemisphere but aren’t sure they’re actually originating on the left side. They say because there is such a small amount of tissue remaining on the right side, the amplitude is much smaller compared to the left, which can make it “appear” like the seizures are actually originating on the left.
The neurologists reduced Gabby’s Depakote because it has the reputation for causing an echo effect on the EEG. The doctors want to collect more information over the weekend and put their heads together on Monday in an attempt to decipher the data they have.
I’m scared. I feeling like I’m waiting for someone to deliver a sentence that will foretell our daughter’s future. These seizures are nasty things. What will they rob her of this time? At the same time, I know God is in control even now. I know He knit Gabby together just the way she is for a reason. I know none of this is some cruel mistake. If I could just see all of this from God’s perspective I know it would make perfect sense. I just need to continue to trust God. After all, He declares in Jeremiah 29:11 “For I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future.”
This journey of Gabrielle’s is part of something bigger. She is in New York right now because that is where God wants her. If you know Gabby then you know she has never met a stranger. She runs up and demands a “hello” from anyone she meets. She always manages a smile and is the first to give a hug to someone in tears. From her perspective, she never has a bad day. She is the first to start dancing when the music plays. “House Mama! House!”, is what she begs of me. She wants me to turn on her favorite song so she can jump and twirl around. Here are the lyrics that she dances to:
“Big House”
I don’t know where you lay your head
or where you call your home
I don’t know where you eat your meals
or where you talk on the phone
I don’t know if you got a cook
a butler or a maid
I don’t know if you got a yard
with a hammock in the shade
I don’t know if you got some shelter
say a place to hide
I don’t know if you live with friends
in whom you can confide
I don’t know if you got a family
say a mom or dad
I don’t know if you feel love at all
but I bet you wish you had
Come and go with me
to my Father’s house
Come and go with me
to my Father’s house
It’s a big big house
with lots and lots a room
A big big table
with lots and lots of food
A big big yard
where we can play football
A big big house
Its my Father’s house
All I know is a big ole house
with rooms for everyone
All I know is lots a land
where we can play and run
All I know is you need love
and I’ve got a family
All I know is your all alone
so why not come with me?
She dances with so much joy……it’s like she already knows there’s a better place waiting for her some day…..her Father’s house.
I’ll update when I know more.
Love,
Kelly
Oh Kelly – we’re with you. Thanks for writing.
Margaret
Poppy and I were with Gabby for several hours yesterday at NYU. She is a joyful child with such spirit. We were in music therapy and she was singing and laughing and trying to get the other children to participate. Her enthusiasm for music was infectious. She played the drum and cymbals and looked up at me and smiled each time she would make a sound. She would answer all the questions the leader would ask and make the sounds of all the animals, even the rooster!! I was saddened to read she had so many seizures again last night. We continue to pray for Gabby and ask God to heal her. We should all be as joyful and giving as Gabby in our every day lives. I continue to be amazed at my daughter Kelly’s faith and courage. She is an inspiration to me and my husband. We love all the O’Melia’s very much!! Mimi and Poppy
Kelly and Duff,
We love you and your sweet Gabby. We are sad with you that the seizures are back, but we rejoice with you that she is such a prize. Mimi got it right. I have never seen such a joyful child. We are praying for complete healing for precious Gabby and we pray that she touches many lives in that hospital this week. Be strong, Kelly and know that He is God.