We met with the neurosurgeon yesterday morning and he gave us the green light to move forward with the VNS. The surgery to put in the VNS is an outpatient one that lasts no more than 90 minutes. Compared to that other surgery a year ago this is small potatoes, and yet I don't take it lightly that Oliver is going under anesthesia and the knife...again.
Now we are waiting for a surgery date (hopefully within a month) and to schedule an ultrasound of Oliver's kidneys. I am anxious to get the date on the calendar and keep this thing moving. Yesterday Oliver had 14 seizures, my stomach turns when I think about it. Me driving down I-40 trying to see Oliver, the CNA comforting him in the backseat, me wondering if we should turn back, should we give the rescue med? All those judgement calls wear me down.
It just never gets easy to watch my 3 year old fall to the floor and have a seizure. I suppose in my heart of hearts I thought it might. Watching your child suffer is like re-opening a wound over and over again. It begins to heal and then it comes apart again. It is exhausting. It makes me long for the day when death and disease will be no more.
From Ann Voskamp's Blog....www.aholyexperience.com
5. Motherhood is a hallowed place because children aren’t commonplace.
Co-laboring over the sculpting of souls is a sacred vocation, a humbling privilege.
Never forget.
1 comment:
Hi lainer
My name is Jenna, you are a brave, courageous fighter and an inspiration.
I was born with a rare life threatening disease, and have 14 other medical conditions, and developmental delays.
I wrote this poem
Each of us are Special
Each of us different,
No one is the same
Each of are us are unique in our own way,
Those of us who have challenges, we smile through our day.
It doesen't matter what other's say
we are special anyway.
What is forty feet and sings? the school chior
http://www.miraclechamp.webs.com
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