Ben’s dad affectionately calls him “our little wild man.” Haha, does this look like a wild child? (Terrible photo taken with my phone.)
He has a sweet spirit and a good heart. But of course he’s not always quiet like this.
Yesterday at school Ben fell in the gymnasium while playing, a fall so hard that the teachers on the other side of the gym heard his head hit the floor. A fall like this would be a concern if it happened to any five-year-old, but with Ben having undergone three brain surgeries, this was quite scary. His teachers and other school staff rushed to his aid, and his classmates gathered around to comfort him. The school notified Ben’s parents, and his dad left work and drove to the school.
After driving Ben home, his dad determined that the wild man probably had suffered a concussion. Our little guy of course had a headache, but he also was feeling dizzy and had blurry vision. I was notified of all of this just as I was getting ready to go to work and was a nervous wreck, worrying about my little grandson.
Ben’s parents took him to his pediatrician and contacted his doctor in New York, Dr. Berenstein who is Director of the Pediatric Cerebrovascular Program at Mount Sinai Health System in New York City. Dr. B. advised that a CT scan be done. Many, many prayers were being said by friends and family who were later very happy to learn that the CT scan confirmed only a slight concussion.
Today Ben returned to school. My daughter (his mom) said he is back to normal. We are so glad!
Here’s Wild Man having fun before the accident…
Here’s hoping he had fun again today at school! Soli Deo Gloria ! #BenStrong
Two days ago I wrote about the attention being given to a Facebook video of 5-year-old Ben running a touchdown last May. (That post can be seen here.) The video was picked up by two national news organizations, and Ben’s story is now on webpages of radio and television stations across the country as well as on the CBS and ABC news websites !
The video that went viral was uploaded to Facebook last Saturday by the high school sports website MaxPreps. It showed Ben running for a touchdown during the Murray County (GA) High School Green and White Game. Because of Ben’s condition and the fact that he will never be able to play football, the Murray County team had given our little guy the opportunity of his life, to play with their team on the high school football field. (You can read about that game and see the local television news report here.)
Both CBS and ABC national news contacted Ben’s dad for interviews (and CBS contacted me). Nothing has been broadcast on television, but both news outlets have done stories that appear on their websites.
The CBS story appeared last night and can be read here.
The ABC story appeared this afternoon and can be read here.
The original video that went viral has been seen on Facebook by over 356,000 people and has been shared by over 6,000 people. We are beyond amazed and are so glad that Ben’s story has been an inspiration to so many! Thank you, Murray County High School!!
God is good! We are blessed!
In my last post, I wrote that grandson Ben’s physician recently was featured on the reality television show NYMed. Two days ago the show’s producers hosted a Facebook chat with the cast. Anyone interested could attend the chat, ask questions, or comment on the show. Although I’d heard of Facebook chats before, this was the first time I’d ever participated in one.
I was so grateful to be able to chat for a moment with Dr. Berenstein (Dr. B.), the doctor who saved Ben’s life. What a wonderful opportunity to let him know how much we thank him for everything he did for Ben and for everything he and his staff continue to do as Ben’s progress continues! Whoever thought I would be able to thank him via social media?
Here’s an edited version of Season 2, Episode 6 of NYMed, featuring Dr. B. and the procedure he did on little Victoria. This was very similar to Ben’s procedure except that before the insertion of the glue into Ben’s brain, Dr. B. placed 18 tiny platinum coils in the AV fistula.
Ben was very excited to start pre-K yesterday. More on that soon. Isn’t is strange that school begins so early in the month of August these days?
Grandson Ben’s doctor, the physician who did the two brain operations last May, was featured last Thursday night on the ABC television network’s reality show NYMed. I rarely watch network television and didn’t even know the show existed. Apparently, each episode toggles between two New York City hospitals and features multiple doctors and medical procedures.
In Thursday’s episode Ben’s doctor, Dr. Alejandro Berenstein, performed an operation on a two-year-old girl in which he closed off a Dural AV fistula in her brain using medical grade super glue, the same procedure used on Ben. Ben, however, had first had 18 platinum coils placed in the fistula to slow the blood flow before the glue was inserted. The before and after images of the blood flow in the little girl’s brain look very similar to Ben’s before and after images.
It was quite exciting (and frightening as well) to watch the procedure on television and realized that my little grandson underwent the same type of operation. I couldn’t help but cry as I watched. Dr. Berenstein was very caring and concerned for the little girl in the show and showed special concern for her parents as well, just as he did for my daughter and son-in-law. Although the little girl on the show was too shy to give Dr. Berenstein a hug or a high-five, I’m happy to report that Ben did both! After the show aired, Ben’s mom and dad posted on Facebook:
Throw back Thursday in honor of Dr. B on NY Med tonight! We are beyond blessed to be able to call him Ben’s doctor!
This is Dr. Berenstein, or Dr. B. as his patients affectionately call him:
There have been two organized events to raise funds to help with Ben’s medical expenses, and those posts can be seen here and here. However, it was just brought to my attention by a fellow blogger that nowhere have I provided information about how people who could not attend those events might also donate to Ben’s medical fund. I can’t believe I never posted that!
It is possible to donate online here. (http://www.gofundme.com/94klps)
As can be imagined, the medical expenses are astronomical. During the first operation, Dr. Berenstein placed 18 tiny platinum coils in the fistula in Ben’s brain, and each coil cost $5,000. That’s $90,000 right there!
While at the hospital in New York, Ben’s parents were told that although the hospital itself is covered by their health insurance, the surgeon is considered to be out-of-network. The insurance company even sent them a list of approved surgeons. Too late! The surgery was already done by that time, and Dr. Berenstein, the world-renowned neurosurgeon who performed the operations on Ben, was not on the list. Ironically, the surgeons who were on the list were the ones at Scottish Rite Hospital in Atlanta who first diagnosed the AV fistula but told the family they were not qualified to perform the surgery. You gotta love the health insurance industry in the U.S. !
Bless his heart! After less than a week back home from the hospital in New York, Ben now must have an abscessed tooth removed. Some of the pain he has been experiencing is from the infection in the tooth, and he has been on an antibiotic for the past three days.
Between bouts of pain, however, Ben has been having a great time relaxing and going fishing as he recovers from his surgeries.
Relaxing in the summer sun
His first dinner date
Super fisherman (3 photos)
Ben is finally home and doing well. He enjoyed the plane ride from New York back to Atlanta, and on his first full day home he actually went swimming! In general, though, he will be taking things easy for a couple of weeks. He continues to suffer from headaches as a result of the fact that the abnormal pressure in his brain, which had been present from birth, is now returning to a normal level. Some of the headaches are mild, but some are quite excruciating for him. Please continue to keep him in your thoughts and prayers, as his recovery is ongoing.
Welcome home, Ben!
After Ben was released from the hospital last Sunday morning, he and his mom and dad got to do a little sightseeing in New York City. Here are a few photos from their time together:
Ben and his dad with Mickey Mouse in front of the Disney store in Times Square
At the waterfront along the Hudson River
In front of the Statue of Liberty on Liberty Island
Happy parents, knowing that their little guy is going to be alright!
Woo hoo! Happy, happy, joy, joy! Ben was released from Mount Sinai St. Luke Roosevelt Hospital in New York yesterday (Sunday) morning after two brain surgeries within a week!
This is the final photo taken of him, with his mom, before he was released:
The family returned to the Ronald McDonald House in Manhattan where they are staying for two nights before returning home to Georgia.
Since his release from hospital, Ben has visited Times Square and the Hudson River waterfront at Hell’s Kitchen (sounds like a lovely place, doesn’t it?) where the USS Intrepid is docked and has taken the ferry to Liberty Island to see the Statue of Liberty.
Tomorrow (Tuesday), he and his parents are flying back to Atlanta and should be back in their Northwest Georgia home by suppertime. We can hardly wait to see this smiling face again!
Yesterday in Chatsworth, Georgia some truly amazing people held a Benefit for Ben event to raise money to help with the expenses of Ben’s medical treatment. My husband and I drove across the state to spend some time there. I also donated some framed photographs of mine for the silent auction, and my husband, a watercolor artist, donated one of his paintings.
Organized by Julie Sane and her husband Jake, the event was well attended even though this is a holiday weekend in the U.S. It offered face painting, a bouncy house, and balloon creations for children; baked goods, cotton candy and frozen treats for sale; food and beverages (the barbeque was excellent!); a dunk tank; raffles of donated items and a silent auction of other items; and live music by two bands. Money raised exceeded $3,000. An additional ongoing project is the sale of Praying for Ben magnets that can be placed on refrigerators or autos to remind people to continue to pray for Ben as he recovers from his operations.
Of course Ben and his parents were not able to be at the benefit. They did get to view a video made by a friend who was there and also have seen a number of photos taken at the event. Here are a few:
So many people have done so much to help Ben. Thank you to the Sane family for organizing this event, to everyone who was there and to all who donated their time, their creations, and their money to make this event a success.