Team Benjamin

BEN'S BLOG IS CONTINUED ON www.teambenjamin.org

2010-06-18T18:50:00.000-07:00

Visit Ben's new website at www.teambenjamin.org to see recent updates on Ben's progress, photos and videos of Ben and much more!

Ben, Vacation and Sensory Integration Therapy

2009-07-11T18:56:00.000-07:00

Last month (June) we took our first family vacation. It was a great week on the beach filled with sun, sand, a pool and of course the OCEAN. Pictures of our trip can be found here (http://snipurl.com/myr0n).

The greatest part of our vacation was that Benjamin was able to enjoy almost every minute of it (except for the part where Daddy put him too close to the ocean and he was hit by a wave). A couple of years ago this is another thing that would not have been possible.

Benjamin spent a vast majority of his time indoors in the first few years of his life. That, in addition to his disabilities, caused him great physical trauma when he would be outdoors. He would wince in sunlight and not even be able to open his eyes. He would gag or cry when the wind hit him in the face. Even sitting in the grass was uncomfortable.

Amazing as it is there is a therapy for this as well that works in concert with Benjamin's physical, occupational, eating and other therapies -- Sensory Integration (SI) Therapy.

SI therapists work on normalizing patients' physical reactions to touch and natural elements, help patients become better aware of their body in space, and help patients work on their ability to manage their bodies more appropriately. Using equipment such as swings, therapy balls, skin brushes and other sensory materials, SI therapy has been incorporated into Benjamin's occupational and physical therapy. On our vacation this allowed him to open his eyes (a little) in the sun, enjoy water rushing on his legs, be in the pool with Emily and feel the sand under is feet.

Seeing Benjamin enjoy our vacation is something we'll never forget.

Ben Graduates from Pre-School

2009-05-29T05:47:00.000-07:00

On Wednesday, May 27 Ben graduated from pre-school. He will move on to Kindergarten in the fall. Many of the other kids in his class have started to learn their letters, numbers, shapes and colors. Ben has not. But what Ben has learned in the past year is how to sit alone in a regular classroom chair by himself - with no straps or no one there to make sure that he doesn't fall. At last year's graduation, Ben was in a mobile stander (which is kind of like a big dolly with wheels that he gets strapped to and can move by manipulating with wheels with his hands) - this year, Ben entered the gym walking himself with a walker. (see video at http://snipurl.com/j0gbk)

Ben is learning to communicate using pictures to show what he means and is learning how to make eye contact. Ben is learning to socialize with other kids instead of play by himself - and, believe me, he has plenty of friends in class. Ben may not be able to recognize blue from yellow or count to 10 out loud, but the skills he has acquired this past year show that he is capable of even bigger improvements in the future. So we look forward to advancing to next year - with a longer day and even more challenges. Thank you for an amazing school year.

A special "thank you" to the wonderful staff at Avon Village Elementary School for their hard work and dedication to Ben, we are so greatful to have you on our team: Mrs. Vrbancic, Mrs. Abfall (the best Aide ever - in picture), Mrs. Pickett, Mrs. DiRando, Mrs. Dougher, and Mrs. Huges.

Ben's Feeding Tube and a Very Special Friend

2009-05-11T18:36:00.000-07:00

Ben had his feeding tube removed today. You couldn't see it, and we only had to use it at night and when Ben needed medicine, but it has been there for almost three years. And today it's gone. To explain how great of an accomplishment this is, I need to tell the story of Ben's eating and Mary Lou Kennedy (left with Ben), another wonderful person who changed our lives.

There was a time in Benjamin's life when his muscles and nerves around his mouth and face were so senstitive and weak that the slightest irritation would cause him to gag and throw up. Whether it was from multiple surguries where he needed to be intubated or from his overall disability, he couldn't eat, couldn't drink, and couldn't take medicine like a normal child. We definitely coulnd't brush his teeth. He had basically stopped growing, staying at the same weight for over SIX months. A few months after his third heart operation he was clearly suffering. We tried everything but nothing worked. As his parents, this was really upsetting to see him obviously malnourished. We also couldn't take him anywhere because he would gag easily and throw up frequently. When he would get sick he would get REALLY sick because we couldn't give him medicine, and ultimately we would have to take him to the emergency room and admit him to the hospital.

Then we found the Cleveland Clinic - Children's Rehab Hospital, which led us to a number of professionals who knew exactly what to do to get Benjamin on the right path. One such person is Mary Lou Kennedy, who has served as Ben's feeding therapist for the last four years. In addition to being a great feeding therapist, Mary Lou has been a one person emotional support group to us and his grandmother Sophie, who has dedicated so much of her time and energy to getting Ben to eat better.

What we learned is that there are a LOT of muscles and actions that go into the simple act of chewing and swallowing and Ben's, of course, were very underdeveloped. Mary Lou knew exactly how to "train" those muscles in Ben's mouth and around his face so he could better accept pureed food, liquids to drink, and sometimes even medicine. We are also now able to brush his teeth with some success. The Clinic also had nutritionists who knew exactly how and when to feed Ben to get the most calories into him as possible. Benjamin's treatment also included inserting a feeding tube into his stomach to support his nutrition. This decision was not an easy one for us as we struggled with thinking we had failed him in some way. But Mary Lou and the Clinic helped us with this decision and made us realize this was a great benefit for Ben, and not a failure for us.

I often say Ben's life was literally saved THREE seperate times. The first at birth, thanks to the doctor's who had already diagnosed Ben's heart defect and were ready at birth to repair his heart. The second when his heart stopped at 2 in the morning after his last heart surgery and was restarted promptly, thanks to a nurse who was at his bedside. The third is when we found Mary Lou Kennedy. Benjamin's condition wasn't critical, but it was definitely life threatening.

Now, today, Ben's feeding tube was removed because of the great progress he has made over the past few years. Benjamin is a long way from eating pizza but, thanks to Mary Lou and the other great people at the Rehab Hospital, our son is thriving and his nutrition hasn't been a question in over a year.

(as you can see he can eat cake with his hands)

Below is a description written by Mary Lou, please read:

"When I first met Ben and his family, he was 20 months old and weighed 19 pounds. Ben had not gained weight for several months, despite his parents best efforts and dedication to feeding him. One of his diagnoses was Failure to Thrive, meaning his weight for his age was less than the 3rd percentile. Ben weighed the equivalent of an 8 month old. He had a hard time drinking more than a few ounces from a bottle, and ate only a few ounces a day of yogurt. I remember sitting in the clinic with Diane and Matt discussing a gastrostomy tube that first day. Our team thought this was the best route for him since he was so undernourished. However, Matt and Diane wanted to give treatment a try before going ahead with the tube.

So we began what has been a 4 year journey to work on Ben's eating. His formula was changed to a high calorie one, he had "homework" of a series of exercises for his tongue, lips, cheeks and jaw to strengthen them. As a result, Ben began to eat and gain weight. By February 2006, at 2 years of age, he was finally on the growth curve. He continued to eat more and more foods, still blended or smooth, but he was eating and drinking. Ben slowly began to chew small pieces of crackers or cereal, and began to gag less and less with lumps and bumps in his food. Though he eventually needed the GT to support his growth, especially when he was sick, Ben made great strides with his eating.

Over the last year or so, Ben has learned to feed himself with a spoon, scoop food from a bowl and feed himself things like crackers, chips or fruit. His family has been able to do things like go to a restaurant and order off the menu for Ben instead of bringing his food along. This seems like such a simple thing but it was such milestone for them. Looking back over the years, I realize how far Ben has come since I met him and what a huge accomplishment it is to have his GT removed. It is largely due to the love and dedication of Ben's family that makes this event possible. I am so thrilled for them, and especially Ben. I wish them many years of good health and all the pleasures that come with eating."

Ben Learns to Stand

2009-04-17T08:13:00.000-07:00

Attached to this blog post are two photos, both taken recently. The first is a photo of Ben and our daughter Emily (who is 1 and a half). This is the first professional photo we have where Ben has been able to independently STAND, which was quite a joy to see. This is the result of many months of work on Ben's posture, core strength and stability, all performed at the United Cerebral Palsy Center in Cleveland.

One of the techniques that has helped this process is identified in the picture below of Ben in what is called a THERASUIT, which is a vest and shorts with a variety of hooks. Stretchy cords are attached to the hooks in a systematic way to improve postural alignment, connect parts of the body and provide deep pressure through the body. Ben's therapist gave this description of the Therasuit -- "wearing the suit is a workout in itself because your body reacts to stay upright against the deep pressure of the suit. For Ben, the therasuit was used to correct his posture in standing and to provide Ben with bigger proprioceptive input. By connecting the feet to the knees to the hips to the trunk, Ben is given more feedback at each joint to help him balance in standing, cruising and walking with an assistive device. Another advantage of the suit is that it provides stabilization and control to Ben without my hands being on him. Therefore, he is self correcting to maintain his balance."

Ben Cheers for LeBron at the Cavs Game

2009-03-30T18:59:00.001-07:00

Benjamin attended his first Cavaliers game last Sunday against the Atlanta Hawks. He enjoyed the pyrotechnics and looking at the jumbo-tron, but he got the most excited when the ball was in play.

Ben Get's A Haircut

2009-03-22T14:12:00.000-07:00

Benjamin received his first professional haircut at a place called Kidz Kuts in Rocky River (link below). For years Ben had reacted very aggresively to getting his hair cut, often crying, gagging and throwing up, which of course made cutting his hair difficult. Lately however he has been more calm around scissors so we decided to take him to a professional after hearing about it from a parent of a disabled child. Very cute place that caters to kids of all ages and types, with a train and lots of kids stuff to take attention away from the clippers. The staff was really friendly and Barb did a great job handling Ben's disability. He was scared at first (as you see in the photo) but when he saw the train run by on the tracks he had a smile across his face. The only problem is the salon is on the second floor of a shopping center and you have to carry your child up steps to access the entrance, so its not suitable for older children who you cannot carry.

http://www.lilaguide.com/reviews/kids-kuts-477084.aspx