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

 

 

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The Storm That Took Us to Ben’s House

We hadn’t planned to go to Ben’s house.  The plan was to visit with him and his mom at our usual meeting place halfway between our house and theirs.  Whenever we keep Ben’s little dog while the family is on vacation, we meet at the Dairy Queen in Ellijay, GA where we can sit outside in a lovely gazebo by the river and enjoy a hotdog and ice cream.

Dairy Queen food

On Monday we did meet there to return Ben’s dog, had a lovely visit, and then headed to our separate homes. It was a beautiful evening, and the sun was shining.

However, we had driven only a few miles when we found ourselves in the middle of a terrible storm.  The sky was black as pitch; rain was pelting down; and I (the driver) could hardly see the roadway.  The wind picked up and became straight-line wind, blowing the rain sideways across the highway.  Like a tunnel through the forest at the best of times, the curvy highway is only two lanes.  It looks a lot like this highway (which also happens to be near our home)…

Photo credit: tailofthedragontours.com

Photo credit: tailofthedragontours.com

As trees on either side began to bend and blow, I said a quick prayer that no branches would break off and fly across the highway, hitting our car.

No sooner had I said the prayer than we saw the lights of vehicles ahead, some on one side of the highway, some on the other, some sitting in the middle of the road.  We could see some headlights and some taillights.  A large tree had fallen across the entire highway, and no one was able to travel in either direction.

We had several choices:

  • sit there in the car in the storm and wait for the Georgia Department of Transportation to arrive and remove the tree which could take several hours
  • turn around and go back to Ellijay and find a motel
  • go back to Ellijay and pick up the only other highway that would get us home, a trip that would take us far to the north and then back down through the same storm and would add at least two hours to our travel time
  • turn around and drive an hour to our daughter’s house and spend the night there

Needless to say, we went to our daughter’s where we stayed the night, received some good news about Ben’s physical therapy, and were able to see his new gear for school which begins next week.

The good news is that Ben’s range of motion in his left foot is improving.  On a scale on 1 to 10, with 10 being where the physical therapists would like Ben to be, he is at 7.  The improvement is thanks to physical therapy, the normal running and playing of a six-year-old boy, and the brace that he wears on his foot at night.  

He's such a good sport about wearing the brace!  But we quickly learned that he cannot wear pajamas with short pants, as the velcro on the brace scratches his other leg while he is sleeping.

Ben's brace 1-2

 

While we were there, Ben showed us his new lunchbox for school, which of course is shaped like a police car.

Police car lunch box

 

And his backpack for school celebrates the men and women he idolizes, officers of the New York Police Department.

NYPD backpack 2

 

NYPD backpack

School starts Monday.  We wish our little guy a happy, healthy, fun-filled school year ahead!

#BenStrong   #Soli Deo Gloria

A Short Chat With Dr. B. and a Chance To Say, “Thank You”

In my last post, I wrote that grandson Ben’s physician recently was featured on the reality television show NYMed.  Two days ago the show’s producers hosted a Facebook chat with the cast.  Anyone interested could attend the chat, ask questions, or comment on the show.  Although I’d heard of Facebook chats before, this was the first time I’d ever participated in one.

NYMed chatI was so grateful to be able to chat for a moment with Dr. Berenstein (Dr. B.), the doctor who saved Ben’s life.  What a wonderful opportunity to let him know how much we thank him for everything he did for Ben and for everything he and his staff continue to do as Ben’s progress continues!  Whoever thought I would be able to thank him via social media?

Here’s an edited version of Season 2, Episode 6 of NYMed, featuring Dr. B. and the procedure he did on little Victoria.  This was very similar to Ben’s procedure except that before the insertion of the glue into Ben’s brain, Dr. B. placed 18 tiny platinum coils in the AV fistula.

Ben was very excited to start pre-K yesterday.  More on that soon. Isn’t is strange that school begins so early in the month of August these days?

 

Another Outpouring of Love: Benefit for Ben

Yesterday in Chatsworth, Georgia some truly amazing people held a Benefit for Ben event to raise money to help with the expenses of Ben’s medical treatment.  My husband and I drove across the state to spend some time there.  I also donated some framed photographs of mine for the silent auction, and my husband, a watercolor artist, donated one of his paintings.

Benefit for Ben FB page

Organized by Julie Sane and her husband Jake, the event was well attended even though this is a holiday weekend in the U.S.  It offered face painting, a bouncy house, and balloon creations for children; baked goods, cotton candy and frozen treats for sale; food and beverages (the barbeque was excellent!); a dunk tank; raffles of donated items and a silent auction of other items; and live music by two bands.  Money raised exceeded $3,000.  An additional ongoing project is the sale of Praying for Ben magnets that can be placed on refrigerators or autos to remind people to continue to pray for Ben as he recovers from his operations.

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Of course Ben and his parents were not able to be at the benefit.  They did get to view a video made by a friend who was there and also have seen a number of photos taken at the event.  Here are a few:

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So many people have done so much to help Ben.  Thank you to the Sane family for organizing this event, to everyone who was there and to all who donated their time, their creations, and their money to make this event a success.

 

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