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No more crutches, but physical therapy continues

I am very happy to report that Grandson Ben is no longer needing crutches to walk after having been on crutches since he had leg-lengthening surgery last November. For the first time since he was a small child, his legs are the same length, and his knees, hips, and shoulders are even.

(The circumstances surrounding the need for the operation and the extent of the surgery and recovery can be found here in my December 5 post and here in my January 15 post.)

Regular physical therapy continues, but the nature of the therapy has expanded. Not only did the doctor release him to walk without crutches, but Ben’s recovery has been so swift and his determination so great, that he is now in physical therapy to begin running, jumping, and doing “diving saves” so that he can play soccer again.

Here’s a very short video of Ben working on jumping…

Please continue to remember Ben and send healing thoughts and prayers his way.

Thanks to all who have kept Ben in your thoughts and prayers over the years. And a multitude of thanks to Dr. Alex Berenstein at Mount Sinai Hospital in New York City who saved Ben’s life over ten years ago.

#BenStrong #Soli Deo Gloria #Baruch atah, Adonai

And as always: Slava Ukraini! Слава Україні! #StandWithUkraine

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Back to school with crutches and physical therapy

I am happy to report that Grandson Ben is back at school after his November 20 leg-lengthening surgery.

(The circumstances surrounding the need for the operation and the extent of the surgery can be found here in my December 5 post.)

After approximately 50 days of lengthening, the leg is now at the healing stage. Even so, no weight can be put on it, and Ben must use crutches for another two months or so. Sometime in March he will get the doctor’s okay to actually begin walking again.

The following photo shows the X-ray taken last week. It was today that I was told that no more actual lengthening is necessary, and the healing can begin.

Ben has been in physical therapy three times a week since the operation. Doctor appointments have been on a weekly basis, but going forward, Ben will not need to see the doctor again for another month.

Last week he was able to kick a soccer ball in therapy (he has played soccer since he was five years old and played on his high school team even with one leg shorter than the other), and he began aquatic therapy.

Out of school since the operation, Ben was able to return when classes began again on January 6 after the winter holiday. Changing classes and navigating the distance from one end of the school to the other was a challenge the first day, but now he seems to be doing fine. School officials are accommodating him, and someone is assigned to accompany him and carry his backpack during class changes. By mid-March he should be able to walk without the crutches.

In late December he did pose for a photo with me without his crutches, but he has no weight on the leg in question, and he is supporting himself by holding onto the roof rack of the car.

Please continue to remember Ben and send healing thoughts and prayers his way.

Thanks to all who have kept Ben in your thoughts and prayers over the years. And a multitude of thanks to Dr. Alex Berenstein at Mount Sinai Hospital in New York City who saved Ben’s life over ten years ago.

#BenStrong #Soli Deo Gloria #Baruch atah Adonai

And as always: Slava Ukraini! Слава Україні! #StandWithUkraine

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A life-altering operation

For the first time since Ben had pediatric neurosurgery at the ages of four and five, he has been back in the hospital for what his father calls a life-altering operation.

Many of my readers have followed Ben’s progress from the time he was diagnosed as a three-year-old with a vascular abnormality in his brain, through three brain surgeries that ultimately saved his life, through his childhood years, and now to his time in high school. 

A little history

I began this blog in 2014 to chronicle Ben’s medical journey. He does not remember anything at all about his health problems as a young child. When he was only 3, he was diagnosed with an arteriovenous fistula (a vascular abnormality) in his brain. It was a life-threatening condition, and he had two brain surgeries at the age of 4 and another surgery the following year, all done by the world-renowned New York doctor, Dr. Alex Berenstein, who developed the procedure for repairing AV fistulas in children.

Ben was declared cured and has grown into a fine young man who excels academically, has played sports since he was five years old, plays percussion in his high school’s marching band, and volunteers in his community.

(Those early posts that explain Ben’s medical condition in more detail can be found by accessing the drop-down menu in the archives at the bottom of this post.)

Fast forward to today

However, Ben faced another operation two weeks ago, this time to lengthen one leg that has not kept pace with the other leg as he has grown. The fistula had been on the left side of his brain, and as he grew, his right leg did not grow as fast as his left leg, leaving it two inches shorter. All of his life he has walked and played sports with a limp that has become more pronounced as he has grown and also has affected his spine.

The surgery was at the same hospital in Atlanta that originally diagnosed Ben when he was only three years old. The surgeon had to break Ben’s right femur because it had a greater curve in it than was normal. A telescopic rod was then inserted into the femur that allows for the lengthening of the bone 1 mm/day for 50 days. Ben will have to be relatively immobile for some time and on crutches (or some sort of assisted walking device) for 4-6 months, and the rod will remain in place for a year.

Ben’s recovery from the surgery itself has been nothing short of amazing. (His first words as he was recovering were that he wanted a chocolate croissant. LOL) His parents had been told that he could be hospitalized for as long as three weeks while he underwent intensive physical therapy at the hospital.

However, he was released to go home within two days and arrived home all smiles and in good spirits.

He now must use a walker and may graduate to crutches but will need some sort of walking assistance for quite a while. Physical therapy is three times a week at a local medical facility. He is in the homebound program at school, and at this time I don’t know when he will be returning to school.

The rod in Ben’s leg is a new device, just approved by the U.S. Food and Drug Administration. Manufactured in Germany, it was personally flown to the U.S. by a representative from the manufacturer who was present in the hospital during Ben’s surgery.

An external controller delivers signals/pulses to the rod which then expands. The controller is held against Ben’s hip, and he listens on a stethoscope to make sure he can hear the whirring of the rod inside his leg. Someone also can listen at his knee, which I was able to do.

Here his mom is delivering the pulses to the leg…

A follow-up doctor’s appointment showed that Ben’s leg has already lengthened by nine millimeters.

Please continue to remember Ben and send more healing thoughts and prayers his way.

Thanks to all who have kept Ben in your thoughts and prayers over the years. And a multitude of thanks to Dr. Alex Berenstein at Mount Sinai Hospital in New York City who saved Ben’s life.

#BenStrong #Soli Deo Gloria #Baruch atah Adonai

And as always: Slava Ukraini! Слава Україні! #StandWithUkraine

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Last game of the season, two band championships, and an upcoming operation

The weekend before Halloween, Ben’s high school held its last football game of the season, and I went over (it’s on the other side of the state) to see him perform in the marching band.

Each section of the band chose the costume they wanted to wear. The percussion section in which Ben plays chose to dress as Secret Service agents.

Ben is second from the left in the following photo…

I love the guy in purple…

Championship band competitions

The week prior to the game, the band had participated in a marching band competition and won the Grand Champion title out of 14 competing bands. His mom took this photo of him with all the awards won by his high school band at that competition.

The weekend I was there, there was another marching band competition, and I was able to attend that one. Eighteen bands performed at the all-day event which took place in Soddy Daisy, Tennessee (yes, that is a real place). Ben’s high school was the only school from Georgia to participate, and again in this competition, they won the Grand Champion title.

AN upcoming operation

So many of my readers have followed Ben’s progress from the time he was diagnosed as a three-year-old with a vascular abnormality in his brain, through three brain surgeries that ultimately saved his life, through his childhood years, and now to his time in high school. There are no words to express our family’s gratitude for all the prayers and healing thoughts sent our way.

Now, Ben is facing another operation later this month, this time to lengthen one leg that has not kept pace with the other leg as Ben has grown. I will be posting more information and updates, but please remember him and send more healing thoughts and prayers his way.

Thanks to all who have kept Ben in your thoughts and prayers over the years. And a multitude of thanks to Dr. Alex Berenstein at Mount Sinai Hospital in New York City who saved Ben’s life.

#BenStrong #Soli Deo Gloria #Baruch atah Adonai

And as always: Slava Ukraini! Слава Україні! #StandWithUkraine

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A new school year

Grandson Ben, who at the age of four had two brain surgeries and a third surgery at the age of five, is now in tenth grade, taking advanced courses, and is driving! Diagnosed just before his fourth birthday with a dural arteriovenous fistula (a vascular abnormality in the brain), he was declared officially cured after the third surgery. But he would not have lived had he not been properly diagnosed and treated. And now he’s in his second year of high school.

In early May, he celebrated his 15th birthday and was able to get his learner’s permit which allows him to drive, as long as a licensed adult is in the vehicle with him.

Later last May, as his 9th grade year was ending, he received honors for having top marks (all A’s) in all of his subjects, awards for top performance in two subjects, and he lettered in band. (For my readers not in the U.S., high school students can “letter” in a sport or extracurricular activity, receiving a cloth letter that can be worn on a jacket or sweater. Receiving a “letter” shows that the student has achieved a level of excellence, and it also symbolizes dedication and school spirit.)

Where Ben lives in northwest Georgia, the new school year began on August 5. He continues to be a key member of the high school marching band, playing in the percussion section. Last year he played the marimba, but this year he will play the bass drum. His standard courses include an Advanced Placement course for which he will receive college credit upon graduation from high school. Last year, Ben chose to take Agriculture as an elective subject which automatically made him a member of the Future Farmers of America. He is continuing that track this year, studying Forest Management. He had no idea that his grandfather, as a high school student, had once wanted to be a forest ranger.

Here’s his first-day-of-school photo. (Again, for my readers outside of the U.S., there are no school uniforms. As long as students adhere to the dress code, they wear whatever they want.)

Thanks to all who have kept Ben in your thoughts and prayers over the years. And a multitude of thanks to Dr. Alex Berenstein at Mount Sinai Hospital in New York City who saved Ben’s life.

#BenStrong #Soli Deo Gloria #Baruch atah Adonai

And as always: Slava Ukraini! Слава Україні! #StandWithUkraine

Am Yisrael Chai

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Our miracle boy is now in high school!

It’s almost unbelievable that grandson Ben, who at the age of four had two brain surgeries and a third surgery at the age of five, is now in high school. Diagnosed just before his fourth birthday with a dural arteriovenous fistula (a vascular abnormality in the brain), he was declared officially cured after the third surgery. But he would not have lived if he had not been properly diagnosed and treated. And now he’s a high school student.

The new school year where Ben lives in northwest Georgia began on Thursday. Because he apprenticed with the high school marching band as a middle school student last year, he already knows quite a few of the high school students. This year he will be a full-fledged member of the high school band. And in addition to his standard courses, he chose to take Agriculture as an elective subject which automatically makes him a member of the Future Farmers of America. That was a surprise, as I don’t think of him as a country boy.

His mom, of course, posted photos on Instagram on his first day of high school. Here are two of those: one showing Ben on the first day of kindergarten and on his first day of high school, and the other showing him with his mom on each of those days.

Thanks to all who have kept Ben in your thoughts and prayers over the years. And a multitude of thanks to Dr. Alex Berenstein at Mount Sinai Hospital in New York City who saved Ben’s life.

#BenStrong #Soli Deo Gloria #Baruch atah Adonai

And as always: Slava Ukraini! Слава Україні! #StandWithUkraine

Am Yisrael Chai

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Friday Night Lights: High School Marching Band

Even though grandson Ben is not yet in high school, he participated in high school marching band this year as a percussionist. Only 13 years old and still in middle school, Ben performs with his middle school concert band, but he also was asked to apprentice with the high school band. He performed at every football game this school year and in every band competition and marched with the high school band in the recent Veterans’ Day parade.

Sharing a few photos…

Thanks to all who have kept Ben in your thoughts and prayers over the years. And a multitude of thanks to Dr. Alex Berenstein at Mount Sinai Hospital in New York City who saved Ben’s life when Ben was only four years old.

#BenStrong #Soli Deo Gloria

And as always: Slava Ukraini! Слава Україні! #StandWithUkraine

Am Yisrael Chai

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Following in his ancestors’ footsteps

Is it in his DNA? Or is it true that our ancestors watch over us and guide us in our lives? I don’t know, but grandson Ben has honored his ancestors without even knowing it.

Last week he represented his school at Junior Youth Assembly, a three-day program held in Atlanta, GA. Sponsored by the Georgia Center for Civic Engagement, Youth Assembly introduces students to the workings of state government and the process by which a bill becomes a law. Students propose legislation, and write and present bills that go first to committee and then may be debated and voted on in the mock State House of Representatives and mock State Senate.

Ben’s mom and I were in New York at the time Ben presented and defended his bill, but his teacher Facetimed us, and we were able to watch debate in real time. I could not believe how professional, composed, and knowledgeable this 13-year-old was.

The bill that Ben drafted, presented, and defended in debate dealt with agriculture in Georgia and the need for Georgia to require more U.S. Department of Agriculture (USDA) regulation and inspection of certain farm products in the state. Did he know that both his great grandfather and great-great grandfather dealt with USDA inspectors on a regular basis in connection with their work? I don’t think he did know. His great-great grandfather is known as the “father” of the modern poultry industry and is even included in Georgia history textbooks used in schools throughout the state. His great grandfather (my dad) was the inventor of the poultry deboning machine and manufactured and sold that machinery worldwide. Both men would have been so proud of this young man.

I’m positive that Ben had no idea he comes from a line of politicians and legislators. His great grandfather (again, my dad) ran for U.S. Congress in the 1960s, and in the early 1980s, was offered a position in the U.S. Department of Agriculture during the Reagan administration. His 3x great grandfather, a member of what at one time was a progressive third political party, served in the Georgia State House of Representatives, and his 4x great grandfather served in the Georgia State Senate. I would venture to say that Ben’s personal political views are infinitely more progressive than the politics of any of those men, but it’s still amazing that he is interested in the political process at his age.

Ben loved every minute of his experience at Youth Assembly. He now is in Washington, D.C. with his school class where he will get an in-depth view of American history and government. He is so excited. Of course he is!

Thanks to all who have kept Ben in your thoughts and prayers over the years. And a multitude of thanks to Dr. Alex Berenstein at Mount Sinai Hospital in New York City who saved Ben’s life when Ben was only four years old.

#BenStrong #Soli Deo Gloria

And as always: Slava Ukraini! Слава Україні! #StandWithUkraine

Am Yisrael Chai

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A new school year

Grandson Ben is now in his last year of middle school. The new school year began two weeks ago, and this year Ben will be serving on the 8th grade leadership team, which carries several specific responsibilities. He also has been asked to represent his school at Youth Assembly to be held in the state capitol building in Atlanta. (This has special meaning to me, as I represented my school at Youth Assembly a million years ago.)

As I’ve written before, Ben is only 13 years old but is already over six feet tall. So he fits right in with the high school marching band in which he is playing this year. A percussionist in his middle school concert band, Ben is apprenticing with the high school band and will be taking to the field to perform at half-time during high school football games. I will get to see him perform in another week when I make the trip over to attend one of the games. His mom took a few photos at last week’s game, including these of Ben getting his marimba ready to go onto the field.

Thanks to all who have kept Ben in your thoughts and prayers over the years.

#BenStrong #Soli Deo Gloria

And as always: Slava Ukraini! Слава Україні! #StandWithUkraine