Blue Angels, Bella, and Back to School

Another summer has flown past. Ben had a number of adventures, brought home a new puppy, and now is back to school.

While on vacation with his dad’s family at the beach, Ben was able to take an exciting side trip to see the Blue Angels, sit with his mom and dad on the flight line during their practice, and meet the pilots.

The second oldest formal aerobatic team in the world, the Blue Angels is the U.S. Navy’s flight demonstration squadron. They participate in over 60 air shows a year and are viewed by an estimated 11 million spectators. Ben was able to watch them and visit with the pilots at their home base in Pensacola, Florida.



A new puppy has joined the family, a French bulldog named Bella. Ben picked her out soon after she was born and chose her name, although he had to wait for several weeks until she was old enough to for him to take her home.



The new school year began on Thursday. (I still think that’s crazy, but no one asked me!) Ben, who is now 9 years old, is beginning grade 4. He is almost as tall as his grandmother (that’s me), and he is already wearing men’s size shoes. On his first day in grade 4, he posed for photos with his mom and dad.



We can hardly believe our miracle boy is beginning 4th grade. As always, many thanks to everyone who has kept Ben in your thoughts and prayers over the past five years.

# BenStrong #Soli Deo Gloria

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A good friend to all, a problem solver, and a team player who works hard to achieve his goals and to help others

Ben wrapped up the school year with an award for academic achievement and the wonderful accolade noted in the title of this blog post. He also was chosen to represent all students in Grade 3 in making a special presentation to the school principal who is retiring now that the school year is over. Needless to say we are very proud of him.

A few other photos from his special day, including one with his teacher…

Waiting to receive his honors…

Recognition and a hug from the school principal (he’s as tall as she is!)…

And celebrating the end of the school year with his mom and with his friend B. who he has known since preschool…

As always, many thanks to all who have kept Ben in your thoughts and prayers since his surgeries five years ago.

# BenStrong #Soli Deo Gloria

Milestones for Our Miracle Boy

 

“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.

# BenStrong #Soli Deo Gloria

New eyeglasses and a new school year

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
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.

In the classroom
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.

#BenStrong     #Soli Deo Gloria

Our miracle boy turned eight and is doing great!

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.

Basketball friends
Fellow church members came to watch him play basketball

Baseball 2018
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.

Church leadership conference

 

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.

Miracle League volunteers

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!

At the Braves game

 

As always, many thanks to all of you who have kept Ben in your thoughts and prayers!

Birthday silliness

#BenStrong     #Soli Deo Gloria

Second grade, here he comes!

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 …

Open house

 

And here’s 7-year-old Brave Ben ready for his first day of second grade…

2nd 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…

Souvenirs from Tyndall Air Base

(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)…

With G-Pa

And his great grandfather ( my dad)…

With Papa

We all wish Ben much success in 2nd grade!  Thanks to all who have kept him in your thoughts and prayers!

#BenStrong     #Soli Deo Gloria

Yay! Ben is okay!

 

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…

#BenStrong       #Soli Deo Gloria

V.I.P. treatment at Tyndall Air Base while waiting on test results

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…

 

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.

#BenStrong       #Soli Deo Gloria

Waiting on Ben’s Results

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.

#BenStrong   #Soli Deo Gloria

 

Brave Ben needs your thoughts and prayers

A year ago grandson Ben was declared to be cured of a dural arteriovenous fistula in his brain

…but some problems have recently arisen, and his dad had to contact Dr. Berenstein in New York, the doctor who performed the procedures that saved Ben’s life.  Dr. B. wants Ben to have an MRI scan (Magnetic resonance imaging) and an MRA scan (Magnetic resonance angiogram) as soon as possible.  Those tests are scheduled for Friday.

It goes without saying that we are frightened, especially since Ben was doing so well and had been considered to be completely cured.  Our family is asking for prayers for Ben and for healing thoughts to be sent his way.  If the results of the scans are serious, he will have to make an immediate trip from his home in Georgia (or maybe even from Florida where he will be vacationing next week) to New York City.

My long-time blog followers know Ben’s story.  For my new followers and casual readers, I will give some background: 

Grandson Ben’s journey began in 2014 when, at the age of 3, he was rushed first to Erlanger Children’s Hospital in Chattanooga, TN and then to Scottish Rite (Children’s Healthcare of Atlanta) in Atlanta, GA where he was diagnosed with dural AV fistula, a vascular malformation in his brain.   Although doctors at Scottish Rite diagnosed the condition, they honestly admitted they could not treat it.  At Emory University Hospital in Atlanta, doctors told the family that without treatment Ben would die and that they could do neurosurgery, but the odds were not good.  We were told that Ben had a 50% chance of suffering a stroke during surgery or that he could die on the table.

Ben’s dad contacted Dr. Berenstein, the New York physician who pioneered the procedure that would save Ben’s life. Dr. B. said Ben would not die, and the chance of his having a stroke was only 5%, not 50%.  Just after Ben’s 4th birthday, Dr. B. performed two endovascular surgeries, the first to place tiny platinum coils in the fistula, and the second to further close it off with medical grade “super glue.”

The annual check up a year later showed that the original fistula had reopened, and a new fistula had formed.  Dr. B. again performed surgery in what was described as a life-threatening situation.

Last year Ben, then 6 years old, underwent a cerebral angiogram as part of the yearly check up.  While he was in recovery, his parents received the good news. The original fistula was completely gone.  The blood flow had been re-routed.  The new fistula that was developing the previous year also was gone as a result of decreased pressure in the brain.

But now we don’t know what to expect.

Please remember Ben on Friday and send your thoughts and prayers his way.

He has had a good year since being pronounced cured and recently completed first grade in school and celebrated his 7th birthday.  He is a bright little guy who enjoys school, plays sports, loves music, and has a strong personal religious faith.

A few photos taken by Ben’s mom as he finished up the school year…

With his silly glasses and the little girl who has been his “girlfriend” since pre-K

 

Last day of first grade

 

 

And a few birthday photos…

The birthday party featured a water slide and other outdoor water fun

 

The party had a Blue Angels theme. The Blue Angels are the flight demonstration squadron of the U.S. Navy.

 

Ben’s most treasured gift was a flight suit like those worn by the Blue Angels aviators. Later, he was very excited to receive a surprise package from a former Blue Angel !

 

This precious child means the world to so many people. We appreciate your healing thoughts and prayers, and we pray that the symptoms Ben has been experiencing will prove to be transient and not indicative of a recurring problem.

(Linking to the DP Challenge today.  We need all the views and all the prayers we can get.)

#BenStrong   #Soli Deo Gloria