“Remember to celebrate milestones as you prepare for the road ahead.” (Nelson Mandela)
And boom! Just like that our miracle boy has turned 9, has just completed his first state-mandated round of end-of-grade standardized testing in school, and by the end of this week will have completed grade 3. But the most important milestone marks 5 years since his diagnosis and surgeries.
When he was only 3 years old, grandson Ben was diagnosed with dural arteriovenous fistula, a rare vascular malformation in the brain. Just after his 4th birthday he underwent two back-to-back brain surgeries to repair the fistula, and the following year was again in a life-threatening condition that required a third surgery. We view the medical care he received and his recovery as nothing short of miraculous.
He has become quite a young man: very bright and excelling academically, a baseball/soccer/basketball/ playing – rock climbing sportsman, a wonderful son to his parents, grandson to us and his paternal grandparents, and cousin to his multitude of cousins. But most of all he is a kind, compassionate, loving person. We couldn’t be prouder.
We were able to be with Ben to celebrate his actual birthday and attend one of his baseball games, although we weren’t able to return for the birthday party which was held the following weekend. Happy 9th birthday, Ben! And never forget how far you’ve come in the 5 years since your surgeries.
Thank you to everyone for keeping Ben in your thoughts and prayers for the past 5 years.
He’s doing great, enjoying school, and is active in youth activities at his church. He just completed another round of physical therapy sessions and has a new “boot” which he wears on his left leg at night. But the best physical therapy he can get is sports, and he is a star player on his basketball team!
Thanks to everyone who follows Ben’s progress, and thank you for all your thoughts and prayers for our miracle boy.
A young man of good character. What parent or grandparent could ask for more?
Grandson Ben was honored recently at school in a “Blue Carpet Rocket P.R.I.D.E. Rally” for exemplifying Peace, Respect, Integrity, Discipline, and Excellence. (Blue carpet because his school colors are blue and white, and Rocket Rally because they are the Westside Rockets.)
We couldn’t be prouder of our miracle boy!
“Good character is not formed in a week or a month. It is created little by little, day by day. Protracted and patient effort is needed to develop good character.” (Heraclitus)
Grandson Ben, 8-year-old miracle boy extraordinaire, is playing soccer this autumn after a year’s hiatus from the sport. Last year he opted not to play soccer and concentrated only on basketball and baseball. But he’s back on a local soccer team, enjoying it, and scoring goals!
We are so grateful that our little guy (who underwent three brain surgeries at ages 4 and 5) continues to love and excel in sports.
Please join our family in sending out healing thoughts and prayers for another little boy, named Levi, who has been in the hospital for almost three months now suffering from the same problem Ben had, arteriovenous malformation in the brain. Levi, who is 10 years old, unfortunately had no symptoms and was not diagnosed until he experienced a severe brain bleed. His condition was touch-and-go at first, but he is now doing much better, although the prognosis for full recovery is not good.
Sporting new eyeglasses, grandson Ben began a new school year yesterday in Grade 3. It’s unbelievable that our little miracle boy who underwent three brain surgeries at ages 4 and 5 is now in the third grade at school.
New eyeglasses and the beginning of a new school year
(Note to my international readers: Here in the U.S., local school districts decide when their school year will begin and end. In most places, school starts anytime from early August to early September and ends in late May or early June, although there can be deviations even from that schedule. Here in the state of Georgia, most schools start in August. And as you can see from Ben’s attire, most schools do not have school uniforms.)
Ben had a busy summer, spending time at the beach with cousins and his dad’s parents, attending a week-long summer camp in the mountains, going on a mission trip with young people from his church, and in his “off-time” attending a summer day camp while his mom and dad were at work. He’s a happy guy who makes friends easily, and he seemed to enjoy every minute of his summer holidays.
We wish Ben much success in school this year, and once again, we thank everyone who has followed his story and kept him in your thoughts and prayers.
Posing in his new 3rd grade classroom
Ben and his dad
Ben and his mom, our daughter
Please join our family in sending out healing thoughts and prayers for another little boy, named Levi, who currently is in the hospital suffering from the same problem Ben had, arteriovenous malformation in the brain. Levi, who turns 10 years old next week, unfortunately had no symptoms and was not diagnosed until he experienced a severe brain bleed about 30 days ago. His condition was touch-and-go at first, but he is now on the road to recovery, although the prognosis is uncertain.
Ben celebrated his eighth birthday on May 12 with an outdoor party attended by friends, neighbors and family members. Exactly one week later was the fourth anniversary of his first brain surgery. Our miracle boy has come a long way in four years…
Ben is a kind, smart, loving, musically talented little guy who loves to play sports. He is active in his church, volunteers to help others, and works hard to complete whatever task is at hand. Tomorrow he will finish up this school year, having completed second grade with flying colors. We couldn’t be prouder of our miracle boy!
During the school year, basketball and baseball were his sports of choice , and no matter what sport he plays he always wears number 32 on his team shirt.
Fellow church members came to watch him play basketball
Ben played third base, and during his first baseball game he hit a triple play
In April, Ben went with a large group from his church to a youth leadership conference in Nashville, Tennessee where he won accolades and awards for his participation in several activities and competitions.
His dad is youth minister at their church, so Ben also gets to participate in many of the activities and volunteer efforts of the high school youth. This photo appeared in the local newspaper when the group volunteered to help out at a sporting event for handicapped youngsters.
And Ben volunteered right here at our house to help us do some spring cleaning on our property…
His well-deserved birthday party was on the hottest day we’ve had this spring, over 90 degrees (over 32 Celsius), and Ben and his friends were able to enjoy the inflatable water slide his parents rented for the occasion.
The following week, remembering the anniversary of his first brain surgery, his parents took him to Atlanta to an Atlanta Braves baseball game where his team won!
As always, many thanks to all of you who have kept Ben in your thoughts and prayers!
The new school year began yesterday for our little trooper, and we are so glad Ben received a clean bill of health from Dr. Berenstein before beginning second grade. (Dr. “B” is Director of the Pediatric Cerebrovascular Program at Mount Sinai Health System in New York.)
The day before classes began, Ben and his Mom attended an open house at the school during which he had the opportunity to meet his teacher. Before they set out, Mom took this selfie photo …
And here’s 7-year-old Brave Ben ready for his first day of second grade…
A couple of weeks ago, we had a lovely visit from Ben and his mom and dad. He especially wanted to show us some of the souvenirs he received while visiting Tyndall Air Force Base in Florida, and he laid it all out for us to see…
(The post about that tour of the air base can be read here.)
It’s always great to have Ben visit! He’s a very kind and loving boy and is beloved by many, many people.
Here he is with his grandfather (my husband)…
And his great grandfather ( my dad)…
We all wish Ben much success in 2nd grade! Thanks to all who have kept him in your thoughts and prayers!
Great news! The results of MRI and the MRA scans on grandson Ben’s brain were excellent! There’s no problem with the original fistula repair, and no new fistula has formed. Dr. Berenstein in New York reviewed over 50,000 images and found no problem. Yay!
Thank you, thank you to everyone who has kept Ben and his parents in your thoughts and prayers.
Originally, when Ben was 3 years old, it was a problem with his eye that led his parents to seek out medical care. Ben was diagnosed with a dural AV fistula (a vascular malformation in the brain) which was causing pressure behind the eye. His little life was in danger, and he underwent a visit to the children’s hospital in Chattanooga, TN, stays in two children’s hospitals in Atlanta, GA, and three surgeries in New York City by a world-renowned physician before the problem was corrected. We are so, so grateful to Dr. Berenstein for saving Ben’s life and for continuing to follow up on Ben’s condition.
Recently, his parents noticed a difference in that same eye, and this is what prompted the brain scans. Now that Dr. Berenstein has given Ben the “all clear” as far as the fistula is concerned, the next step will be an appointment with an ophthalmologist to have Ben’s eyes checked.
Again, thank you to all who have Ben in your thoughts and prayers. I’ll keep you posted…
There still is no word on results of the MRI and the MRA on Ben’s brain. Dr. Berenstein’s office in New York received the images, but Dr. B. was out of town this week. When he returns he must review over 50,000 images, so we do not expect to hear anything now until next week. In the meantime, Ben has been at the beach with extended family and had an exciting tour of Tyndall Air Force Base which is nearby.
Ben with his sweet cousin, P.
Tyndall Air Force Base is the home of the largest F-22 fighter wing in the Air Force. The fighter wing trains F-22 Raptor pilots and other personnel for worldwide assignments to combat Air Force units. It also organizes, equips, and trains a Raptor squadron for immediate worldwide rapid deployment. Ben’s dad arranged for a tour yesterday, and Ben was able to visit the air traffic control tower (where he actually cleared a pilot for takeoff), meet with F-22 Raptor pilots, attend a service dog demonstration, and eat lunch on the base.
At the air traffic control tower…
Clearing a pilot for takeoff…
After visiting the control tower, Ben met two pilots from the 95th Fighter Squadron. The 95th was first activated in 1942 and supported the Allied invasions of North Africa and Italy during World War II. After the war the squadron was assigned to the Alaskan Air Command and later to the Washington, D.C. area. In 1974, they were reassigned to Tyndall Air Force Base. Although they were inactivated in 2010 due to budget constraints, they were reactivated in 2013 and are the new operational F-22 squadron at Tyndall.
The 95th Fighter Squadron is known as the “Boneheads,” and their motto is “Death With Finesse.”
Ben posed with “Mr. Bones” …
and was given a 95th Fighter Squadron shirt as a souvenir…
Two pilots from the 95th Fighter Squadron showed Ben around an F-22 fighter plane and let him try on some of their gear…
And of course they posed for the obligatory photos…
Look at the legs on this kid! His doctor says that by the time he’s 17 years old, he will be 6’8″ (203 cm) tall!
Lunch on the base was highlighted by a number of souvenirs for our little guy, including this photo signed by some of the F-22 pilots…
To everyone at Tyndall Air Base who made this day so special for Ben, his mom would like to say, “What an amazing day for an amazing little boy! A big thank you to Tyndall AFB for allowing us this opportunity and treating us to something so special!”
Please continue to keep Ben and his parents in your thoughts and prayers as we all await the results of his brain scans.
The results of grandson Ben’s brain scans, which were done here in Georgia on Friday, were “over-nighted” by Federal Express to New York where Dr. Berenstein will view them. Over 57,000 images were taken during the MRI and the MRA. Now all we can do is wait, but we hope to hear results this week.
Before his brain scans Ben was in good spirits and played video games while waiting at the Children’s Healthcare of Atlanta facility…
Over the past 3 years Ben has had a number of brain scans, but this was the first time that he was not sedated. Here’s what his dad said…
Today was the 1st time Ben has ever attempted to have an MRI/MRA w/o anesthesia. The nurses & lab techs allowed me to pick him up & set him in the “tube”. After having multiple shields & guards placed over him, they told Ben that he “could not move for the duration of the scan”. Over the next hour, he was so uncomfortable that he started to cry but HE NEVER MOVED!!! After everything he’s already overcome, I shouldn’t be surprised by anything he does but this blew me away.
Ben’s dad is the youth minister at the church they attend and was scheduled to take the high school youth group to the Six Flags Over Georgia amusement park the day of Ben’s scans. He had to ask other people from the church to take the youth to the park and planned to join them after the scans. However, because Ben didn’t have to recover from sedation he was able to go, too, and was very excited…
And the youth group members welcomed Ben with open arms…
Most teens could care less about little kids. NOT MY YOUTH GROUP!!! All 23 ppl who went to 6 Flags today stopped what they were doing & gave Ben a huge hug as soon as they saw him. After lunch, he didn’t want to hang with me. Several members of the youth group offered to stop what they were doing & quit riding the “Big Boy” rides and instead, take Ben to the “Kiddie Rides”. I never asked them to do it….they wanted to!!!
Ben and his parents have now joined extended family on his dad’s side for a beach vacation. However, if after viewing the images sent to him, Dr. Berenstein finds an “emergent situation,” they may have to leave the beach and travel to New York. The waiting is the part that is so scary. As his dad says, “Your prayers have gotten us through the 1st stage of this test but there’s a much bigger hurdle in front of us now. Please DO NOT STOP PRAYING!!!”
Thanks to everyone who is keeping Ben and his family in your thoughts and prayers.
