In “grave and immediate danger” six months ago. Playing basketball tomorrow.

Last week Ben and his parents came to celebrate the Thanksgiving holiday with us.  We are so very thankful to have this little man in our lives, and most especially when we think of all he has gone through.

Six months ago today, Ben was in “grave and immediate danger.”   Medical tests revealed that the repaired AV fistula in his brain had reopened.  Another brain surgery had to be done, and we were told that the situation was life threatening.  He came through the surgery beautifully and in no time was up and playing in the hospital in New York.

In the playroom 2

Now six months later, he has completed a season of T-ball and a season of soccer.  Tomorrow he plays in his first basketball game.  Whoever thought this little guy would play sports after three brain surgeries?  We are excited to be able to travel to see him play his second basketball game next week.

Ben’s dad, who has coached him in T-ball and soccer and also is the basketball coach, is one of the best children’s coaches I have ever seen.  He posted this about Ben on Facebook today:

Perspective is an amazing thing!!!

Today started off crazy and work was chaotic as ever. I thought I was having a “bad” day when it hit me…………….

………6 months ago today, our precious baby endured his 3rd brain surgery. I will never forget the feeling of complete helplessness and utter fear that I felt when Dr. B told us that Ben’s life “is in grave & immediate danger” and that he would have to do another emergency brain surgery to save his life. After remembering that day, it made today seem like a breeze.

We were originally told that we would have to be back in NYC for a check-up TODAY but, because Ben is doing so good, we do not need to go back till the spring/summer of 2016. There is no way Katie Holloway & I could ever thank you enough for your constant prayer and support.

It is only by the grace of a loving God that Ben is still with us today and I’ll get to coach his 1st basketball game tomorrow.

Ben’s dad also referees high school football and basketball games, and Ben has learned the signals used by football referees.  On Thanksgiving he enjoyed showing us what he has learned…

Thanks to everyone who reads these posts and keeps up with what is going on with our little trooper.  Please continue to keep Ben in your thoughts and prayers.

Soli Deo Gloria !    #BenStrong

 

The Wild Man Suffers a Scary Injury

Ben’s dad affectionately calls him “our little wild man.”  Haha, does this look like a wild child?  (Terrible photo taken with my phone.)

On the ipad

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

 

Ben Is Getting National Media Attention !!

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 !

He has the ball

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.CBS story

The ABC story appeared this afternoon and can be read here.

NBC storyThe 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!

#BenStrong  !!!

Ben Is Home! Woo Hoo!

Just over a week ago Ben had his third brain surgery within a period of 13 months.  Three days after this most recent surgery he was out and about again in New York City, and he DID get to go to a New York Yankees baseball game.

 

NYPD
Out and about with one of his heroes, an officer from the New York Police Department

 

 

One day after the ball game, Ben was headed home.  His happy face on the airplane tells the story.  Soooo happy to go home, he later told me the hospital was like a “monster” to him.

Headed home

 

On his arrival home he was greeted by an outpouring of welcomes from his sweet little neighbor friend.

 

And some Welcome Home balloons from his G-Pa and me.

Welcome balloons

 

Ben’s mom went back to work later in the week, and Ben’s dad stayed home with him.  Isn’t that great that Ben could spend that time with his dad?!  And what a wonderful time they had together.  Here is a Facebook post from dad:

- Pack of chewing gum from street vendor......$3 - One night in the NYC Ronald McDonald House......$35 - NYC cab fare to go five miles......$45 - Major brain surgery by the best doctor in the world......$250,000 - Getting to work outside (at home) with my "best pal" when  exactly one week ago we were told he had a life-threatening  condition......BLESSED (and priceless)!!!
– Pack of chewing gum from street vendor……$3
– One night in the NYC Ronald McDonald House……$35
– NYC cab fare to go five miles……$45
– Major brain surgery by the best doctor in the world……$250,000
– Getting to work outside (at home) with my “best pal” when
exactly one week ago we were told he had a life-threatening
condition……BLESSED (and priceless)!!!

 

My husband and I finally were able to visit with Ben yesterday.  We had kept his little dog while he was in New York, and we met the family half-way between their house and ours (we live two and a half hours away) so we could visit for a little while and let Ben take his dog back home.  It was so good to see this smiling face…

Yesterday's visit

As always, please continue to keep Ben in your thoughts and prayers.  As a result of his ordeal, he has lost some range of motion in one foot and now walks with that foot turned inward.  At Dr. B’s request, Ben’s mom and dad have contacted his pediatrician to arrange for physical therapy.  Tomorrow, Ben also will begin formal swimming lessons which not only should be fun for him but also could help stretch and strengthen the muscles in his foot.  I will keep you posted…

Back In New York: Ben Has Another Operation

The past couple of days have been very worrisome.  Ben’s medical tests began shortly after 9:30 Thursday morning. He was scheduled to have an MRI and an angiogram, with testing to last a minimum of four hours.

Ready for his medical tests
Ready for his medical tests

However, once the tests were underway they revealed that the fistula in his brain (the one that had been repaired a year ago) had reopened.  Ben was admitted to the hospital, and his mom notified us that, “They are going into surgery now to repair it.  It is life threatening.”  Once again, Dr. B went in through a vein in Ben’s groin and inserted tiny platinum coils, each only as wide as a human hair, into the fistula in Ben’s brain. It was just after 6:00 p.m. when Ben came out of surgery.  An extremely long day, but the operation was a success!

Our little guy has been bolstered by so many prayers and positive thoughts from around the world, and his cousin created an inspirational poster for him to keep by his bedside.

Mighty warrior

 

Being in the hospital certainly isn’t fun and games for anyone, especially not for a 5-year-old, but Ben was encouraged to play in the hospital playroom before being discharged today.

 

And now, only two days after the operation, Ben is out of the hospital and back at the Ronald McDonald House! Understandably, he has had a hard time, but if he feels up to it a New York Yankees game is in the works for tomorrow, and the family hopes to fly home the following day.  Another New York trip will be forthcoming in about 8 months, as Dr. B. did find an additional fistula that needs to be repaired.  However, it is not causing any symptoms or problems, and Dr. B thinks that it may go away or be greatly decreased by that time due to the lessening of pressure in Ben’s brain that will result from this most recent surgery.

As always, please keep Ben and his parents in your thoughts and prayers.  We appreciate every good thought and every prayer.

 

 

 

 

 

 

Back In New York: “Fishing” at the Statue of Liberty

Last year when Ben was in New York for his brain surgeries, one of the highlights of his trip was a visit to see the Statue of Liberty.  This year he asked to go back there again.  Yesterday (which happened to be his parents’ ninth wedding anniversary) the family returned to Liberty Island…

 

Going fishing is one of Ben’s favorite pasttimes, and while on Liberty Island he just had to take advantage of being around all of that water. He pretended that he was fishing.  As his dad commented, “You can take the boy out of the country but you can’t take the country out of the boy…..Ben had to go fishing at the Statue of Liberty!!!”

For those of you who don’t understand “Southern,” here’s what Ben said, “Dad, I reel my line in so fast because I got a bass so fast.”

As I write this, our little guy is under anesthesia undergoing medical tests at Kravis Children’s Hospital in New York.  It will be a long day.

 

 

Back In New York: A Day of Doctor’s Appointments, Plus Some Fun

Ben had a long day of doctor’s appointments today, seeing three doctors prior to his scheduled tests on Thursday. According to his mom, the family must arrive at Kravis Children’s Hospital at 6:30 Thursday morning to check in for the testing. Doctors will do an angiogram and an MRI with contrast. Then, if additional surgery is needed it will be done at that time while Ben is already under anesthesia.

Here’s a portion of a recent article featuring all three of Ben’s doctors:

Article

 

Dr. B (Dr. Berenstein) was very encouraging today, according to Ben’s mom, and we hope no more surgeries are needed. Ben’s parents are asking that anyone who can, and who has one, to please wear a Ben Strong shirt on Thursday in support of our brave little man!  As part of a fund raising effort to help pay for Ben’s medical care, the Ben Strong shirts have been purchased by family members, friends, and many other well-wishers. Even Dr. B. and his nurse will be wearing Ben Strong shirts on Thursday!!!!

 

 

As the family settles in to the Ronald McDonald House in New York, Ben has begun participating in some of the activities there.  More photos to come…

In the meantime, his mom posted this photo of the view from their room…

View

 

Visiting the huge Toys R Us store in Times Square was a treat!  The store wowed Ben with its giant ferris wheel and life-size figures…

 

But the most inspiring visit so far has been to the World Trade Center Memorial on a chilly, rainy day…

World Trade Center Memorial

 

As always, please continue to keep Ben in your thoughts and prayers as he goes through the medical tests on Thursday…

Back In New York: At the Ronald McDonald House

Yesterday, Ben and his parents traveled back to New York City for his upcoming one-year followup medical tests. Ben will see Dr. B (world-renowned pediatric neurosurgeon Dr. Alejandro Berenstein) on Wednesday and will undergo tests on Thursday.  If necessary, additional neurosurgery will be done.

Last year’s airplane flights caused Ben to have headaches, due to pressure changes as the planes ascended and descended.  That was not a problem yesterday. Yeah!

And Ben was able to ride in style from LaGuardia Airport to the Ronald McDonald House in Manhattan where they will be staying again this year.

Riding in style

 

Ronald McDonald Houses provide low-cost accommodations, emotional and ministry support, and other services for families of chronically ill children who are undergoing medical treatment.  Ben loved his stay there last year and especially liked the playroom, which he already has visited this trip.

Ronald McDonald House

In the playroom

 

When they first arrived at the Ronald McDonald House yesterday, Ben was greeted with a package that had been sent by his mom’s co-workers. His mom’s friends at work have shown so much love and concern for this little guy, and they made sure he has snacks enough to last him the entire week he will be in New York.

 

Dinner last night was at Bareburger where Ben’s mom had a bison burger and his dad had a duck burger, but Ben enjoyed a traditional beef burger.

Bareburger

 

Before Ben’s medical appointments and testing begin, the family will be having some fun time together in the city, plus his mom and dad will be celebrating their wedding anniversary.  I’ll be posting more this week about their adventures…

(Did you know that amazon.com has a program that provides a simple and automatic way for you to support your favorite charitable organization every time you shop?  When you shop at smile.amazon.com, Amazon will donate a portion of the purchase price to your favorite charitable organization. You can choose from nearly one million organizations to support.  I have an Amazon Prime membership, and every time I shop, a portion of the purchase price goes to the Ronald McDonald House of New York.)

The Touchdown of His Life

Ben loves football, but because of his condition and his brain surgeries he will never be able to play on a football team.  It is almost impossible to play American football without suffering from head injuries, and this is true even for children who play on organized teams.  Knowing this, a very special football team gave Ben the chance to play with them in their stadium and to score a touchdown last Friday night, an event that was covered by the local newspaper and on television. Before the game   The Murray County High School football team in Chatsworth, GA (the school for which Ben’s dad played football when he was in high school) made Ben a team member for their annual Green and White Game and treated our little guy as if he were a true celebrity. On Thursday night, Ben went to the stadium to practice with the team (24 sec.) …

 

For the Friday night game, the team printed posters that were handed out to the crowd and placed banners on the fence surrounding the football field.  The coach surprised our family by wearing the same sort of “Ben Strong” shirt that we all wore to support our little trooper. (6 images)

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Before the game began, Ben posed for photos with some of the Murray County football cheerleaders… Posing with cheerleaders

And to our surprise a sports reporter and cameraman from Channel 3, the NBC News affiliate in Chattanooga, TN, showed up to interview Ben and his parents… Channel 3 news interview

Ben had to wait until the game was nearing halftime before he would have the opportunity to play.  In the meantime, the sports reporter sent out a series of tweets on Twitter, announcing the upcoming story on the 11 o’clock news (5 images)…

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Just before the half, Ben got ready… Dad and Ben coming into the stadium Putting on his shoulder pads Shoulder pads are on

And waited on the sidelines with the team… Waiting on the sidelines

He donned his helmet… Donning his helmet

But to this grandmother he looked so little when he finally took his place on the field…

And then he had the ball and began to run for a touchdown… He has the ball

Although he ran down the field with no problem during practice, the weight of the shoulder pads and helmet and even the football itself caused him to lose his footing.  But he got back up and kept running… A fall

As the White Team players tried to “tackle” him, the Green Team players blocked for him, and he ran for a touchdown… Touchdown

He was hoisted high in the air, with his teammates chanting, “Ben, Ben, Ben!” Little hero

After the touchdown run, there was one more run, this time through a large banner held by the cheerleaders (6 images)…

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Our little scorer was so happy and proud… Proud scorer His expression says it all

Ben was able to keep the football jersey, shoulder pads, and helmet the team had purchased for him to wear. He also went home with a football autographed by all of the Murray County football players… Posing with signed football

There is no way our family can thank Murray County High School enough.  The football players, coaches, cheerleaders, and everyone who put so much into this event are all amazing and have filled our hearts with so much joy.  They have given our little boy the experience of a lifetime.

We are grateful, too, for the news media who reported this story.  The local newspaper, which is a weekly paper, was published today and featured Ben on the first page of their sports section.  Because we live so far away, we haven’t yet received our copy.  Chattanooga Channel 3 aired Ben’s story at least 3 times.  Here is that video…

 

Please remember Ben as he and his parents travel to New York in just over a week.  It has been a year since his two brain surgeries, and he will be having follow-up tests and additional surgery if necessary.  Thanks to everyone for their encouragement, thoughts, and prayers.

After the game 1 After the game 2

Ben Turns Five

In a little over two weeks, Ben returns to New York for follow-up medical tests and, if necessary, additional brain surgery. But first he had to celebrate his fifth birthday with a humdinger of a Minion-themed party last Saturday in which the entire side lawn was turned into a water park.  Between 40 and 50 people attended, including neighbors, family members, and friends.

Party 1

Party 3

 

There was a fun sprinkler in which the children could play and also a kids-size swimming pool.

 

But the pièce de résistance was an inflatable water slide.  As the afternoon wore on, the base of the slide turned into a mud puddle, and the kids didn’t even seem to notice.

 

A Minion piñata filled with candy and small toys also was part of the fun, and there was a gift bag for each child who attended the party.

 

It took a lot of pizzas to feed the crowd.  For dessert there were cupcakes and other goodies made by Ben’s aunt plus a Minion cookie cake.

 

On this blistering hot day, the heat and bright sunlight proved to be too much for our little guy.  He has been complaining of headaches again lately, and while his guests were still playing he asked to be taken inside so he could rest.  He had a bad headache, and his dad took him in the house where he napped for quite a while.

Party 12

 

It was only after resting that he felt like opening his birthday gifts.

Party 13

 

I don’t know how his parents will top this next year, but in the meantime some other folks have big things planned for our little trooper.  There’s more to come this next weekend, and we’re so excited!