Friday, July 8, 2016

Poem from SchizKidz Buddies, July 18, 2001

We are people who have never met, most of us do now know each other's last names,
or what we look like.
Perhaps if we saw each other in a mall, we would walk right past each other.

But, we know each other's hearts.
That is the important part.
We have laughed cried and prayed together.
We have exchanged phone numbers, and a few of us have been lucky enough to meet.

We are not just a group of people with babies with seizures, or learning disabilities, or a particular condition. Our children came to us with various 'extras'
Some have medical, physical or mental challenges.
Some have all of these challenges put together.
Collectively, we have more medical knowledge than most doctors.

But we are not about defeat, or about children born less than perfect.
We do not elicit pity.
What we are is simply parents.
Parents doing our best to raise our children in loving environments,
free from discrimination, or being looked upon constantly as 'different.'

Although we may be very different in some ways,
We are very much the same in most ways.
We celebrate that smallest of milestones,
rejoice in our children's tiniest accomplishments.
We have a deep understanding of the cycle of life;
we know how precious a single breath can be.
Our children have taught us not to take a single moment for granted.

We are wonderfully blessed to be parents of children who are very special in many, many ways.

Monday, July 4, 2016

My Son and Selective Dorsal Rhizotomy

Since April in the midst of our move, my son has asked me to pursue our application for him to get this surgery. 

When googled Selective dorsal rhizotomy or SDR is defined by the Cleveland Clinic as a surgical procedure performed on the lower spinal cord. The nerves are separated then identified via an electrical stimulation. Following identification, certain sensory nerve fibers in the spinal cord are cut. 

I came across this procedure when I started practicing in Savannah, GA. I met a five-year-old young man with cerebral palsy caused by periventricular leukomalacia (PVL).  This is a form of white-matter brain injury, characterized by the necrosis (more often coagulation) of white matter near the lateral ventricles.[1][2] It can affect newborns and (less commonly) fetuses; premature infants are at the greatest risk of the disorder. Affected individuals generally exhibit motor control problems or other developmental delays, and they often develop cerebral palsy or epilepsy later in life. 

Something I thought my son had before he was diagnosed with schizencephaly at 10 months-old. His mother had high expectations of him. She was afraid he was getting seizures at the moment I met them. He had the procedure a couple months after I started seeing him in therapy. The procedure did marvels for him. Before he couldn't sit up, get up, or use his legs to attempt walking and afterwards he did. I was really impressed at the outcome. When I mentioned the possibility of my son getting another botox treatment she suggested strongly that I seriously look into SDR instead. 

This was four years ago. Needless, to say I was busy with my practice and custody difficulties with my ex-husband and it was inevitably affecting both my children.  For the divorce, I agreed to joint custody to get the matter finalized. But this custodial arrangement did not suit my son with special needs. I filed for a modification four months after the divorce papers were signed by the judge who did not hear our temporary divorce case.

The custody modification deadpanned for three years until September 2015 when the judge who signed the papers held a special hearing. Our case took almost 8 hours. After hearing both sides he took it under advisement. 

The final outcome is that it took for me to have full custody of my son for him to want the procedure.

It has been three months since I started the process. This is where we are having the procedure. 

The coordinator required for me to obtained specific x-rays. I've sent the MRI of my son's brain that diagnosed the schizencephaly in 1999. We finally got the Physical Therapist evaluation last week. In two days he will see his new general/family physician.