Amazing...

I was in Detroit last week with my daughter, Amanda, my granddaughter, Lola, my grandson, Henry, my son, Michael and his fiance, Melanie. Amanda and the kids flew in from Little Rock and Michael and Melanie drove up from Chicago. We were all there for one very important reason...Research for Sturge-Weber Syndrome (SWS). We found out about this important study many months ago so Amanda contacted Detroit Children's Hospital and found out that Lola was a candidate.

It was exciting, scary, emotional and exhausting. Our family support team is absolutely the best!!! (Unfortunately Nick and Mitch could not be there...but we felt their love and support and knew they wished they could have been). There were three days of testing. First, she was evaluated by cutie patootie, Dr. Will. He thought Lola was adorable and loved one particular response to the following question:

Dr. Will: "Lola, what are shoes made of?"
Lola: "Diamonds."

She is a sparkly, princessee, matter of fact kind of girl after all. Next came the IV...ugh...that hurt...all of us. They put this mesh kind of a stocking over it because they were leaving it in for further tests to come and didn't want to stick her each day. By the end of the evening she held her hand out as if it were some sort of fancy accessory. She actually liked it. She never complained, just admired and adjusted the mesh here and there and wore it proudly and daintily.

Over the course of the three days, along with Dr. Will's evaluation, the following tests were done: an Electroencephalography (EEG),
a brain PET Scan (looks at the function of the brain) and an MRI (looks at the anatomy of the brain).

The sedation was the hardest part. It took much longer than expected and we had to hold her and try to comfort her while she thrashed around and cried out in discomfort. They told us this was normal (although very difficult to watch), and that it was making her feel dizzy and confused. This made us uneasy and helpless.

From the PET scan the area that has been affected in Lola's case is the Right Parietal Lobe. It showed some damage.

We met with Dr. Juhasz, Associate Professor of Pediatrics and Neurology and Dr. Chugani, Professor and Chief Pediatric Neurology. Dr. Chugani mentioned that Lola's MRI scan presented a special case because of how her brain was overcoming the depleted nutrients to portions of her brain (right parietal lobe). Dr. Juhasz said he has never seen anything like it. Both Doctors said she is a "Special Case." They have NEVER seen what her brain is doing. They saw new developments in vein structure happening in her case. Her brain is basically making new "roadways"....with deep veins and many of them. That was very exciting!! They were amazed at her and said she was one of their top 10 patients. They couldn't believe she was only 4.

She wanted to know everything they were doing and was interested in all of it. We are glad it is over and that she was part of this very important research for SWS. Through research our greatest hope is finding a cure and helping other children like her.

Through it all, she did not complain, she was interested in what they were doing, and she smiled as if she knew she was part of something really special. She is very brave and we are extremely proud.

I hope you all are having a Wonderful Wednesday full of smiles, bravery and shoes made of diamonds...

Thank God for research...it can make a difference!