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.
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.
…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…
And a few birthday photos…
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.)
The U.S. is the only industrialized nation in the world that does not provide equal access to healthcare for all citizens. Obamacare expanded healthcare coverage and made it more affordable for many Americans, but the current Republican-led House of Representatives just voted to gut that coverage. One of the worst aspects of the House plan is that insurance companies would no longer have to provide coverage for pre-existing conditions. Pre-existing conditions include not only serious medical conditions such as cancer and diabetes but also medical problems like high cholesterol and even pregnancy. The actual list is quite long.
Many Americans are “up in arms” over what the House of Representatives has done. Bear in mind that the bill also must pass the U.S. Senate, and many believe that is unlikely. However, I, too, am “up in arms” because our Brave Ben clearly has a pre-existing condition.
Here is what I posted on Facebook about this matter…
This is what a pre-existing condition looks like. Would you like to tell him that he is less deserving of access to healthcare options than others? Giving him limited access to a high risk insurance pool is not the same as allowing him to have health insurance!
Please don’t get distracted by thinking these issues are political. These aren’t issues that need to boil down to voting along party lines. This is about people. Men, women, and children who are more than a label of “pre-existing” condition. This is about people you love in your family. People you see everyday at work. Neighbors. Friends. HUMAN BEINGS. As Christians, as Americans, as humans we are responsible for looking at the people beyond the politics.
This is my grandson Ben. He will turn 7 years old on Friday but already has had 3 brain surgeries for a vascular malformation in his brain. Those surgeries saved his life, and he now excels in school, plays sports, and lives a normal life.
Our President and Members of Congress should work harder at ensuring we all have the right to affordable quality health care! Every life matters. Not just those the insurance companies deem worthy.
This is not about Republicans. Or Democrats. It’s about people. Let’s not let our politicians and media distract us from that. #lovepeople
(Thank you to Jennafer Eddy-Loving who first stated this so beautifully. I borrowed much of her original post.)
Grandson Ben’s dad reminded us that it was three years ago today that 6-year-old Ben’s medical journey began. This journey would see him diagnosed as a 3-year-old with dural arteriovenous fistula, a vascular malformation in the brain that was potentially fatal. And it would take him to several hospitals and through 3 brain surgeries. Today, he is a happy, healthy, thoughtful, kind young man who plays sports, enjoys school, and is about to celebrate his 7th birthday.
Here is what Ben’s dad posted today:
And here is Ben (with dark hair) with his dad and his friends Carter and Cameron:
It’s been three months since I last posted about grandson Ben, and since then our family has faced a serious medical situation.
Ben and his mom were visiting for the weekend when my husband, Ben’s G-Pa, had a major stroke last month. The situation could have been quite frightening for a six-year-old boy, but Ben showed no sign of distress.
Because he idolizes emergency workers and because he, himself, has been transported by ambulance, Ben welcomed the EMTs as they came to treat his G-Pa. As G-Pa was being taken out of the house on a gurney, Ben stood ramrod straight and saluted his grandfather the way soldiers, firefighters and police officers salute a fallen comrade. I will never forget that sight as long as I live.
His own time spent in hospitals has made Ben very aware of proper hospital etiquette. Though he spent many hours at the hospital while G-Pa was there, both in the emergency room and in G-Pa’s hospital room, he exhibited model behavior and acted in quite an adult manner. I was very proud of him.
Over the course of G-Pa’s hospitalization and immediately after he came home, both daughters and all three grandchildren visited, coming and going and coming back again. Ben was able to visit with the two cousins he rarely gets to see.
He loved being with cousin Kylie who flew in twice from Florida…
And cousin Jessie who flew in from Boston where she attends college…
Here’s the entire group (minus me) with G-Pa after he returned home…
As always, please keep Ben and our entire family in your thoughts and prayers.
We are very proud of grandson Ben who was honored yesterday by getting to Walk the Blue Carpet at his school. In a special ceremony, Ben was given an award for “Excellence in Choosing Success and Trying Your Best.” He loves school and is doing so well.
We were not able to be there, but his dad’s parents surprised Ben by attending the ceremony. They both have had serious health problems and have not been able to attend many of his sports or school events lately. He was very excited to see them there.
Ben’s mom was so proud of him and videoed our miracle boy as he made his way down the blue carpet.
We visited Ben’s family last weekend and attended his Saturday morning basketball game. Ben is running much better lately even though he has not been going to physical therapy as often as before. Playing sports is good for him! And he scored the first basket of the game!
Getting ready for Christmas
The plan last weekend was to do a Friday night Walk Through Bethlehem which was to feature a live nativity scene. However the temperature was in the 20s Fahrenheit (below 0 degrees Celsius), and the organizers postponed the live event due to the cold (we’re not used to the cold here in the South). Instead, they had a bonfire, hay ride, and cookies and hot cocoa with Santa.
Ben thoroughly enjoyed himself and began singing as we headed for the car to go home, although he did stop walking long enough for one more photo.
We had another encounter with Santa while shopping at a boutique the following day.
This Santa was as country as cornbread, convinced Ben to ask for a dirt bike for Christmas, and informed us that Ben should leave snickerdoodle cookies out for Santa himself on Christmas Eve and chocolate covered cherries for Santa’s reindeer. What a hoot!
We are looking forward to Christmas with this little guy!
Ben’s indoor soccer team ended their Fall season a couple of weeks ago by playing the same team they were playing earlier in the season when Ben was hit in the nose and knocked to the floor by a soccer ball. We were worried then because our little guy has undergone three brain surgeries, but he wasn’t badly hurt, and thankfully, there were no injuries this time. (I posted previously about that injury here.)
The team celebrated their season with treats and trophies…
We were very happy to be able to attend this last game. Even though I was not feeling well, I was able to take some photos, and I put together this video…
An exciting time at an air show
Last weekend Ben’s parents took him to the Wings Over North Georgia air show. Even though he was not feeling well that day (it turned out that he had strep throat), he had a wonderful time. Not only was it exciting to watch the show, but he had fun climbing in a military helicopter and into the cockpit of a C-130 transport plane like the one on which his uncle flew while serving in the U.S. Air Force.
The highlight of the air show was seeing the Thunderbirds, the air demonstration squadron of the U.S. Air Force. The Thunderbirds Squadron tours the United States performing aerobatic formation and solo flying in specially marked aircraft. They take their name from the legendary Thunderbird that appears in the mythologies of several indigenous North American cultures.
Ben was lucky enough to have his photo made with two of the Thunderbird pilots…
A request for prayers and good thoughts
Please keep Ben’s other grandparents in your thoughts and prayers. They both are facing serious medical issues. They live closer to Ben than we do and have been so instrumental in his young life. He is not aware of how serious their medical conditions are.
Thanks to everyone who has asked about Ben recently. Please continue to send out good thoughts and prayers on his behalf.
Of all the players to get smacked in the nose by a soccer ball it would have to be the one who had three brain surgeries! Nonetheless, our little guy is doing great. Ben plays on the youngest and physically smallest soccer team in his league, and when an older, bigger player kicked the ball right into his face, he was knocked backwards onto the ground. An X-ray showed no broken nose, only some bruising. We are so grateful for that good news!
Ben is in first grade, and when asked how school is going he always says, “Good.” When asked what he likes best about school he always says, “Playing outside.” But his mom says he loves to learn and is a diligent student. That’s music to this teacher/grandma’s ears. His class recently had a Career Day, and students were encouraged to come to school dressed for the occasion. Of course, Ben dressed as a New York City police officer. Our family is so thankful for the kindness showed by the NY Police Department, especially the 20th Precinct, to the children at the Ronald McDonald House in Manhattan the last time Ben was there.
An 88th birthday
Not all children have the opportunity to know their great-grandparents, but Ben has been blessed to know two of his. He was only 3 years old when his great-grandmother (my mother) passed away. I’m sure his memories of her now are only dim ones, but he loved her and enjoyed spending time with her when she was alive. He knows his great-grandfather (my father) well, loves him much, and helped him celebrate his 88th birthday last weekend.
Ben is doing great. He continues with physical therapy once a month. Please keep him and his mom and dad in your thoughts and prayers.