Up until late 2007, early 2008, she progressed so much that she could walk, dance, stand and jump with just a little assistance. This was due to intense interventions and therapy all throughout the United States and Canada. In 2008 though, everything went wrong.
India spiraled downhill before my eyes and the worst of it wasn't witnessing India's bitter disappointment as she tried in vein to make her body work. The worst of it was the pain that ravaged her.
As a father, this is horrific to witness and the helplessness can't be properly described. Sometimes late at night, the pain gets so bad that India asks me to hold her on my chest as we are lying down. She curls up in the fetal position while I rub her back and legs to relax her little body and hope to alleviate the pain.
We’ve gone through a series of doctors, all of whom have good intentions. But despite the best of intentions, some of the doctors have been very wrong. In fact, several of the suggestions from Physicians could have caused India a lifetime of intense chronic pain and infection.
Fortunately, I’ve been at this for 13 years now and am wise enough to know to question everything. We did some research and found a world-renowned doctor in Summit, New Jersey who specializes in working with children with disabilities.
We recently made the trip from our home in New Mexico to New Jersey. Our visit with this doctor was beyond belief. For the first time in a very long time, I felt overwhelming hope and happiness.
This new doctor was the first to not want to do intensely invasive surgery. He explained in detail what the bleak outcomes would be if we allowed India to go under the knife and saw of the surgeons. Keep in mind, the previous surgeons wanted to saw off the top of my daughter’s femurs and pack the leftover void with some sort of substance in the hope to keep the remaining femur from pushing its way through the muscle and skin; leaving bone exposed. This new doctor talked about the infections and pain that would be caused from the plethora of screws and hardware that would have to be attached to India's bones.
So he we sit, excitedly preparing and patiently waiting for September 27th, the day of the new doctors outpatient procedures. My little girl will have what’s called an Alcohol/Ethanol Chemoneurolysis to take away her chronic pain in her hips. This is procedure where the nerves that are causing my daughters pain will be treated with a solution that deadens them. She will then have a Soft Tissue Lengthening to loosen up her hips/legs. And finally, my baby-girl will receive a Transtympanic Neurectomy and Chorda Tympanotomy. This procedure eliminates her excessive drooling. India is absolutely beautiful and currently has 2 boyfriends. I can clearly see her embarrassment when she drools in public so this procedure should really help her self esteem.
I’m feeling like I can see the light at the end of the tunnel right now. I’ll let everybody know how it goes at the end of this month.
On a side note, I have to admit that we are incredibly fortunate to have good insurance. Just the doctors fee for the Transtymapanic Neurectomy is $9,000.00, not including hospital fee's. The entire bill will exceed $40,000.00. I feel so sorry for those parents who don't have insurance.
I’m feeling like I can see the light at the end of the tunnel right now. I’ll let everybody know how it goes at the end of this month.
On a side note, I have to admit that we are incredibly fortunate to have good insurance. Just the doctors fee for the Transtymapanic Neurectomy is $9,000.00, not including hospital fee's. The entire bill will exceed $40,000.00. I feel so sorry for those parents who don't have insurance.
The following are 3 of the 4 stories of what happened to my daughter that left her with Cerebral Palsy:
India Walking On The Beach 2007
India Standing 2008
India Skiing 2009
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