Showing posts with label brainard. Show all posts
Showing posts with label brainard. Show all posts

Monday, August 22, 2011

"2nd Opinion"

By 2011, India had been spiraling downhill at a very rapid pace. My little girl went from standing and walking assisted, dancing, sitting on her own and almost completely pain free to not being able to walk, stand, sit, dance and in constant pain to the point of not being able to attend school for a full day. Here is a video that shows India's gains and losses.

This has been a terrible experience for all of us, the helpless feeling as my daughter cries in pain is chilling.  Either Vikki or I were up in the middle of the night, every night trying to comfort India.

Until 2011, we had been putting our faith in a pediatric orthopedist from our home state.  This physician's bedside manner was rough but I believed this doctor was focusing on India’s needs, the "whole picture"; not just slice and dice.  This doctor said our only real option to reduce India’s hip pain was a very intense surgery called the McHale procedure.  To describe this procedure in the simplest way, they cut off the top of the femurs, leaving a void in the upper thigh that they fill with fat from other areas of the body.  This didn’t set well with us, something was very wrong.  In addition, this doctor put my little girl on a monthly Pamidronate infusion.  This wasn’t a pleasant experience and India was clearly not happy about it. The infusions made her sick and we saw no positive results. We were confused and scared.

As luck would have it, my wife came across a world renowned physician in New Jersey while reading published material related to cerebral palsy.  This doctors writings were absolutely amazing. I felt a new sense of hope with each word I read.  We immediately made the decision to book a flight to New Jersey and meet this man.

Our meeting was fantastic and to say I'm elated would be an understatement.  This doctor, Dr. Roy M. Nuzzo, was hands down the most knowledgeable, no bullshit physician I've ever met.  He took his time, hyper focused on us and was very concerned about the "overall picture" of India's life; she wasn't just another patient.

Dr. Nuzzo told us that the procedure that our doctor wanted us to do, McHale procedure, was not only inappropriate, but it would cause my daughter a lifetime of pain and infections. When I asked about other "replacement" surgeries, he didn't pause for one second with his response; NO.  Unlike other doctors who were willing to put my daughter through a year of traction/recovery, certain pain and no guaranteed outcome, he went the opposite direction. Dr. Nuzzo gave us an outpatient option that would take away India’s pain and allow her to get on with life and being a kid.

The first procedure he recommended was called an "Alcohol Block".  This is where the nerves causing the pain are treated with an alcohol solution that deadens them.  This lasts anywhere from 1 to 10 years or more.  Then he recommended a series of "Soft Tissue Lengthening" (My daughter had this once before).  I asked if India could do the things she loves after the surgery like standing and dancing.  Dr. Nuzzo told me that his instructions post surgery will be "let India get on with her life". Those were the sweetest words I'd heard in a long time.

Dr. Nuzzo also spent a long time explaining to me why the infusions my daughter was getting are not only useless but harmful.  He said that India’s previous physician should never have started these treatments, there was no reason and some of the outcomes that were promised were 100% false. There I sat feeling

I booked my child’s surgery on the spot.

I was incredibly thankful that we came across Dr. Nuzzo and especially after all we’d been through with India, I was once again reminded that doctors are "educated guessers" and I should never hesitate to do my research and get a 2nd opinion.

Dr. Nuzzo can be found via his website:

Saturday, April 17, 2010

My Insane Family - The Swedish Delight

Before I was born, my family lived on 13th Street in Albuquerque, New Mexico.  This is a great neighborhood; dozens of families with lots of children.  One of our families’ closest friends, the Striblings, lived directly across the street.  Both families had a herd of children and all these children had a serious propensity towards shenanigans’. 

Mr. Stribling was an incredible man.  I remember him well and always enjoyed my time with him.  Mr. Stribling was a gentle, well mannered, kind man. He had an incredible reputation and was well loved throughout the community. 

One day my mother decided to play a prank on Mr. Stribling.  She was 9 years old at the time.  She waited until my grandparents were out of the house to begin the preparation of what would forever be known as the “Swedish Delight”. 

My grandfather always had the family, all 6 of them, scrape their plates into a large metal bowl after every meal.  At some point, this smorgasbord of food would become a treat for my grandfathers’ beloved Labrador Retrievers but never before the bowl was full which took several days.  My mother took the contents of the bowl, which were already ripe and began her preparations.  She worked the awful pile of leftovers until they were soggy enough to place into an old food mold of my grandmothers.  When my mother’s delicacy was finished forming in the antique mold, she carefully popped it out onto a gold leaf china serving dish. 

Now you need to know that about that time, my mother’s grandmother Dora Wilson, had been traveling throughout Europe.  This included a visit to Sweden which Mr. Stribling knew about.  He also knew that Dora Wilson had just returned home from her travels.

Mom waited for Mr. Stribling to get home from work.  Shortly after he arrived home, she ran across the street to give him the carefully prepared European cuisine.  Mr. Stribling was sitting in his living room relaxing when my mother walked in.  She went straight up to him, handed over the gift and said “my grandmother asked me to give this to you; it’s from her travels in Europe”.   Mr. Stribling asked, “What is it?”  My mother quickly replied “it’s called ‘Swedish Delight’”.  Mr. Stribling graciously thanked my mom and told her to thank Dora for thinking of him.  My mother .promised to convey his message and left.

When my mother left the room, she didn’t leave the house, instead she sprinted around the corner into Mr. and Mrs. Striblings bedroom, slowly opened the door, which led into the living room where Mr. Stribling was sitting, lay on the floor and proceeded to watch the grand feast take place.

Mr. Stribling picked up the fork that my mother delivered with the meal and began to eat the greasy, days’ old pile of horribleness.  After a few bites, Mrs. Stribling walked into the room.  She is equally as wonderful a person as Mr. Stribling but that day, much wiser and alert.  When she saw what he was eating, she loudly exclaimed “Tom Stribling, what are you eating!”  Mr. Stribling replied, “Why I’m eating this Swedish Delight that Dora Wilson brought to me from Europe”.  Mrs. Stribling then shouted “Tom, those are dog scraps from the Wilson’s kitchen!  Mr. Stribling froze in mid bite and slowly looked up at Mrs. Stribling who was standing over him; he had been had and he knew it

My mother lay in the doorway, with her hands cupped over her mouth, trembling with laughter.  She almost gave herself away but luckily was able to suppress her laughter and slip out the back door.

This was only the beginning of my mother’s alternative culinary career; there was much more to come.