Tonight, Ethan, my husband, and I consulted with the Doctor at Beaumont who is leading the research being done in the US for the nerve rerouting surgeries pioneered by Dr. Xiao from China. He was very honest and very thorough. In all honesty, it is a difficult decision to make. We could have the surgery done in China but the risk of having loss of motor functioning is pretty high. Most of the children in the American study have had to work hard with Physical Therapy to get back to baseline (where they were before the surgery). Meaning, during the surgery they have to take part of the nerve that helps us to walk and reroute it to where we need to have bladder and bowel functioning. This means that you can have anywhere from a slight lower motor function loss (ie weakness) to the inability to walk. Despite this, many of the children have had increased bowel function & some increased bladder functioning. One child has had a very promising outcome.
There is something inspiring about this child. She was someone who had one functioning nerve to use for the surgery. The doctors wondered how she was able to walk in the first place with one nerve. She walked with arm crutches and the Doctors believed that if there was someone that this procedure probably would not work on, it would be her. She had many factors working against her. Despite this, her parents still wanted to go through with the procedure. It took her the longest of all the participants to recover and after the surgery she could not walk. But, she worked hard for a year and returned to baseline (where she was before the surgery). She is the only one that has complete bowel and bladder functioning. I remember talking to the research coordinator over a year ago about this child and how passionate her parents were about going ahead with the procedure. Now, I did not talk to these parents myself but I felt a sense of 'belief' among them as the research coordinator explained the situation over the phone. I never forgot their story and always wondered how she did. I believe these parents knew something that most of us fail to recognize many times; they had faith. They went with their inner voices and insisted that their daughter have the surgery. They worked hard and the outcome was phenomenal.
So, tonight, we sit on the fence. Debating back and forth in our minds the pros and cons. There is a real chance that this could work and there is a real chance that it could not work. There are so many factors that have already lined up for us.
1. The fact that my sister in law lives in Shanghai where that surgery would take place.
2. It would be at the most technologically advanced hospital in China.
3. The man who has done over 1,500 surgeries would be doing this himself.
4. The Doctor who is researching here in America would help do the follow ups we would need when we would get back.
5. We have the best Physical Therapist in the country to help Ethan out after surgery recovery.
OK... the cons...the doubts...the fears...
1. We don't know for sure if this will even work.
2. Ethan could loose motor functioning that we worked so hard to get in the first place.
So, tonight, tomorrow, and the next day we wait patiently to keep gathering information to make the best decision we can. We have a meeting with Dr. Xiao next week. He 'just happens' to be coming to America for more surgeries about 25 minutes away from where we live. When I called him last night (morning time for him) he 'just happened' to pick up right away and be available to talk, answer some questions, and set up a possible time for us to meet next week.
Today and tonight, and every day I pray for clarity. "Dear God, Please give me a clear sign so that we will know with out a doubt that we should follow through with this surgery or that we should not. I need clarity here! Thank you, Amen"
On the drive over to our appointment tonight and on the way home it seemed like every song we listened to on the radio had the words, 'faith, love, believe, and healing' in the lyrics. Of course, I just listened and took it all in.
When I was preparing my youngest one, Eleanor, for a bath tonight I turned on the Celine Dion CD that 'just happened' to be in my CD player in my bathroom. I have not listened to this CD for many months and had forgotten it was in the CD player. The first song went like this...
The Power of a Dream
Deep within each heart
There lies a magic spark
That lights the fire of our imagination
And since the dawn of man
The strength of just "I can"
Has brought together people of all nations
There’s nothing ordinary
In the living of each day
There’s a special part
Every one of us will play
Feel the flame forever burn
Teaching lessons we must learn
To bring us closer to the power of the dream
As the world gives us its best
To stand apart from all the rest
It is the power of the dream that brings us here
Your mind will take you far
The rest is just pure heart
You’ll find your fate is all your own creation
Every boy and girl
As they come into this world
They bring the gift of hope and inspiration
Feel the flame forever burn
Teaching lessons we must learn
To bring us closer to the power of the dream
The world unites in hope and peace
We pray that it will always be
It is the power of the dream that brings us here
There’s so much strength in all of us
Every woman child and man
It’s the moment that you think you can’t
You’ll discover that you can
Feel the flame forever burn
Teaching lessons we must learn
To bring us closer to the power of the dream
The world unites in hope and peace
We pray that it will always be
It is the power of the dream that brings us here
Feel the flame forever burn
Teaching lessons we must learn
To bring us closer to the power of the dream
The world unites in hope and peace
We pray that it will always be
It is the power of the dream that brings us
The power of the dream
The faith in things unseen
The courage to embrace your fear
No matter where you are
To reach for your own star
To realize the power of the dream
To realize the power of the dream
WOW! Was this the clarity I had been praying for? All I know is that there is a little boy named Ethan who has given the world a gift of healing. He is bringing people together from all over the world. I thank him for this and I honor him for this. And I thank you for joining us. We could not do this with out you.
As Celine sings it best,
"There’s so much strength in all of us
Every woman child and man
It’s the moment that you think you can’t
You’ll discover that you can"
Thank you & please share our story
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