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

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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

 

 

Beginning First Grade

Three years ago our little trooper’s life was in danger, and we did not know what lay ahead for him.  This week he began first grade!  We thank you all for your prayers for and support of Ben these past three years, and we thank Dr. Alejandro Berenstein in New York for the vascular neurosurgery that saved Ben’s life.  Most of all we thank God for His healing grace.

Ben’s mom took these photos (one is a selfie of herself with Ben) on his first day of school…

#BenStrong   #Soli Deo Gloria

 

800 Days

Ben’s aunt and two cousins came to visit last week, and while they were here Ben made an interesting announcement.  He told us that it had been exactly 800 days from the day he received the diagnosis, as a 3-year-old, of a Dural Arteriovenous Fistula (vascular abnormality in his brain) until the day he was pronounced cured by Dr. Berenstein in New York.  Eight hundred days! Exactly! (His dad did the calculation.)

Ben with his two cousins, our granddaughters Jessie and Kylie

Ben with his two cousins, our granddaughters Jessie and Kylie

 

Ben doesn’t get to see these two girls very often, and he didn’t want them to leave.  We are grateful to them for their love for him and their support of him.

A year ago this month Jessie, rather than asking for birthday gifts for herself, asked people to donate to a fund to help with Ben’s medical expenses.  Here’s what she posted yesterday:

J's update on Ben

Ben's cousins Kylie and Jessie, his mom, Ben, and his Aunt Chris

 Cousins Kylie and Jessie, Ben’s mom, Ben, and his Aunt Chris

 

#BenStrong   #Soli Deo Gloria

Home with his most prized possession

Brave Ben came home from New York a little over two weeks ago, bringing with him an item that now is his most prized possession.  We saw it for the first time when he and his parents came to visit this past weekend to celebrate his mom’s birthday…

After receiving his clean bill of health from Dr. Berenstein in New York, Ben had a couple of days to celebrate before flying back home.  His family joined other families staying at the Ronald McDonald House for a bus tour of New York City.  And he visited the Sweet Shop where he could indulge his sweet tooth…

The Sweet Shop

 

But the excursion that had him more excited than Christmas and his birthday put together was an outing sponsored by the New York City Police Department, specifically the 20th Precinct.  Ronald McDonald families were treated to a boat trip on the Hudson River and were taken back to the precinct where the NYPD cooked dinner for them and let the children sit behind the police desk and on police motorcycles and horses and dress in protective gear.

 

Behind the police desk

 

Our little guy posed with Chief Murtagh and was even featured in the 20th Precinct’s Twitter post on June 10.

Posing with the Police Chief

20th Precinct Twitter feed

20th Precinct Twitter feed 2

Ben was in seventh heaven, and it was here that he was given his most prized possession.  One of the female officers from the 20th gave him one of her NYPD shirts!  Here he is wearing the shirt back at the Ronald McDonald House…

The Shirt

(He was so excited to receive this gift that he even wore it to church this past Sunday!)

Back at home in Georgia a day after the excursion, Ben found several welcome messages from his sweet neighbor…

Our little trooper is glad that he doesn’t have to return to the hospital in New York, but he’s going to miss the Ronald McDonald House and all of the wonderful people there…

He's going to miss the Ronald McDonald house

#BenStrong   #Soli Deo Gloria

Brave Ben is cured !!!

Original tweet

This tweet says it all!  It was posted yesterday on Twitter by Dr. Thomas Oxley, neurologist and  neurointervention fellow working with Ben’s doctor, Dr. Alejandro Berenstein, at Mount Sinai Hospital in New York.  As Ben’s mom said, “What a journey for a really little boy and a really Big God!”

Grandson Ben’s journey began in 2014 when 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.  He was only three years old.  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.

My readers who have been following Ben’s story know that 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 fourth 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.

Yesterday Ben (now six years old) underwent a cerebral angiogram as part of this year’s check up.  His mom reported that he was in good spirits before the procedure…

Before the angiogram

Ben and his dad before yesterday’s angiogram

 

The procedure lasted about two hours, and our little trooper was required to lie still for six hours afterwards…

In recovery

 

While Ben was in recovery, his parents received the good news. The original fistula is completely gone.  The blood flow has been re-routed.  The new fistula that was developing last year is gone as a result of decreased pressure in the brain…

Collage

 

BEN HAS BEEN GIVEN A CLEAN BILL OF HEALTH !!!  There is no need for anymore annual trips to New York unless additional problems arise. There is nothing more except for an MRI in five years!

Ben is healed

From left: Dr. Thomas Oxley, Ben’s mom (our daughter), Brave Ben, Dr. Alejandro Berenstein, and Ben’s dad.

 

Ben wants to go back to New York for a visit sometime in the future, and he already has expressed sadness that he will not be able to stay at the Ronald McDonald House, which has been his home away from home and has provided his family with so much love and support…

Ronald McDonald House

 

There is no way to express the gratitude we all feel, gratitude to Dr. Berenstein and his team for healing our little guy, gratitude to everyone who has kept Ben in their thoughts and prayers, and most of all gratitude to God for all He has done. One of Ben’s favorite Scripture verses sums up what God has done for this little guy:

 “For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.”   (Jeremiah 29:11 )

 

Soon after arriving at the Ronald McDonald House this week Ben went into the music room, picked up a guitar, and began to sing one of his favorite songs, “In the Eye of the Storm.”  Here is the YouTube video of the original recording of that song.  May it’s message comfort others as much as it has comforted our Brave Ben…

 

#Ben Strong       Soli Dei Gloria !

Encouraging news from Dr. B. and fun in New York

Ben had an appointment with Dr. Berenstein early this afternoon, and his mom posted this on Facebook:

Good news from Dr. B.

We continue to pray for an excellent report on Thursday!  In the meantime Ben is having great fun in New York.  His mom and dad are letting him choose what he wants to do, and he has kept them very busy.

They have eaten breakfast at The Green Kitchen…

Green Kitchen

 

And lunches at Bare Burger and at America’s first pizzeria, Lombardi’s…

Bare Burger

 

In Central Park, Ben rode the famous carousel…

Carousel in Central Park

And, Georgia boy that he is, he found a rock to climb!

Central Park 3

 

He wanted to visit Times Square…

And Grand Central Station…

 

And yes, faithful readers, he visited a fire station, Engine Company 44…

…where he received royal treatment!

 

Tonight, families staying at the Ronald McDonald House are being treated to a free bus tour of the city.  Then it’s back to the RMcD House for a good night’s rest.  Here’s Ben’s view from the family’s room…

Room with a view

#BenStrong    Soli Deo Gloria!

“Where we go one, we go all. We’re all in!”

Grandson Ben and his parents traveled from Atlanta to New York today for Ben’s annual checkup with Dr. Berenstein at Kravis Children’s Hospital.  Both parents have been worried sick because last year when they made this same trip for a checkup, Dr. B. found an abnormal blood flow in Ben’s brain and had to perform an emergency, life-saving surgery.  We all are hoping and praying that Ben gets a clean bill of heath this year.

Ben has been a little trooper through three endovascular brain surgeries in the past two years.  This little family has had a roller coaster of a time, and they’ve stuck together like glue.  As our daughter says, “Where we go one, we go all. We’re all in!”

Then and now

 

Another concern this year was the fact that they would not be able to stay at the Ronald McDonald House because it is undergoing major renovations.  All available rooms were reserved for children ages 0-3 with cancer.  For Ben, the Ronald McDonald House has been a highlight of these trips.  It provides him a place to play and children with whom to play and helps him forget for a while the reason he is in New York.  Last year Ben told me the hospital was like a “monster” to him, and the Ronald McDonald House was the one thing to which he looked forward.  For his parents, the House provides love and support during a very frightening time, and staying there helps defray what would otherwise be the exorbitant cost of lodging in a hotel for a week.  So, how to tell our little guy that he would not be going to the Ronald McDonald House?

By some miracle, still unexplained, everything worked out!  The social worker from Dr. B.’s office called to say that out of hundreds of families for whom she had tried to get a room at the House, Ben’s family was the only one to get in.  “I can’t wait to meet your son.  I hear he’s an amazing young man,” she added.  Dr. Berenstein himself told Ben’s dad, “This is just another small miracle that God has done for little Benjamin.”

So, prior to flying out early today, the family stayed overnight in Atlanta at a hotel overlooking the airport runways…

Room with a view

On the balcony

And Ben and his dad were able to swim in the hotel pool located right by the planes…

Swimming by the planes

 

My faithful readers know how Ben loves police officers and firefighters.  When he finally arrived at the Ronald McDonald House this morning he was excited beyond belief to find out that a New York City police officer was sitting just inside the door…

 

And the music room, which was being renovated last year, is open again!

In the music room

#BenStrong    Soli Deo Gloria!

“Fair and just in all he says and does”

“Ben is fair and just in all he says and does.  In his young life he has set an example for many to follow.”

This was the tribute given to our little man as he finished up his year in kindergarten!  He was honored both at his school’s awards ceremony and on the last day of school when he was chosen to represent all of the kindergarten classes and “walk the blue carpet” at the school’s end-of-the-year “rocket rally.”

An award and a hug

An award and a hug

 

Rocket Pride

Ben's cousin received an award, too, for setting a good example

Ben’s cousin received an award, too, for setting a good example

 

Walking the blue carpet (still shot from video)

Walking the blue carpet (A still shot from video)

 

We are so proud of Ben’s progress this year!

First day and last day

Now it’s on to first grade!

On to first grade!

 

In another week, Ben and his parents will be on their way to New York for his check-up with Dr. Berenstein at Kravis Children’s Hospital.  Please keep them in your thoughts and prayers.

Soli Deo Gloria !    #BenStrong