An Extraordinary Childhood

About being proud of what you have

noreply@blogger.com (Baolam Greystorm) — Fri, 24 May 2013 12:08:00 -0700

Last week Peter said something that really moved me. We were discussing about what to do with his old braces now that he has outgrew them.

He said, "I'd like to keep them. When I become 20, I'll probably have many pairs of old braces. I'm collecting them."

He went on to say that people can either feel ashamed of what they have or feel proud about it, and he chooses to feel proud about having his braces. I was close to tears. I couldn't believe he said all that. It's incredible how far Peter has come.

He is growing and he is doing really well. At school he is known for being a bookworm, always going around with his thick chapter books. He used to have this constant need to move around that drove me crazy. He turned that habit into playing video games for hours at a time. But luckily, he found an interest in books. So, besides the limited hours of TV and game time, he just go from book to book.

He takes the easy road at school though. He seems to spend far more time socializing than schooling. I'm not sure where he got that relaxed style from. But that's alright. As long as he's doing well health-wise, I'm fine with it.

I do hope he will spend more time on school work. He can do it. His teachers are very encouraging. They are so kind all the time. I can't thank enough for such a wonderful school.

If there are more kids like Peter, soon there won't be any intimidation due to a physical limitation or illness. He is so inspiring.

Dr. Robin Davidson of Umass Medical Center

noreply@blogger.com (Baolam Greystorm) — Tue, 12 Feb 2013 09:39:00 -0800

My first spine surgery was done at UMass Memorial Medical Center by doctor Davidson. I was too small to know who he was. The last time my mother asked about him, he was retired from the hospital.

Dr. Robin Davidson specializes in neurosurgery in Worcester, Massachusetts. He has 49 years experience as an MD and education at University of Rochester.

Doctor Davidson is now retired but he is pretty active post retirement. Here's a recent post mentioning the wonderful doctor Davidson:

"Physicians, psychologists, nurses, social workers, peer counselors and physical, occupational and speech therapists all were represented in the clerkship faculty—as were VA health care providers and active members of the Massachusetts National Guard who are directly involved in improving awareness amongst veterans about suicide prevention. Among them were Robin Davidson, MD, a retired UMMS faculty member and Navy veteran who opened the clerkship with images and stories of military health care delivery in Iraq; Christine Runyan, PhD, clinical associate professor of family medicine & community health, who served seven years as a clinical psychologist in the Air Force; and School of Medicine Class of 2000 alum David B. FitzGerald, MD, a neurologist and neuroimaging researcher for the VA." Read more..

Rate Dr. Davidson

Peter Against Obesity

noreply@blogger.com (Baolam Greystorm) — Tue, 12 Feb 2013 07:40:00 -0800

Peter was warned early on about keeping a healthy weight. It helps him walk better and it may prevent other bone damaging problems as he grows.

He is pretty good about it. He hardly ever eats chunk foods during the day. He just sticks to 3-4 meals a day and that's yet. Sometimes, he stop eating fruits and vegetables and so we encourage him to eat more of those foods. Peter is awared that it's best to not be obese.

Obesity results when a person's intake of calories exceeds his or her energy needs for bodily functions (metabolism, physical activity, the thermal effect of food, and growth).

Similarly,weight loss results when the body uses more calories than are taken in through eating.

According to the Spina Bifida Association..

60% of our energy is used for basic metabolism;
Physical activity uses about 25%;
Fhermal effect of food about 10%; and
Growth about 5%.

Continued excessive intake will lead to storage of energy in the form of fat. Conversely, insufficient intake will force the body to use stored energy (fat and other tissue like muscle) for the calories it needs to function, leading to weight loss.

Special Concerns for Those With Spina Bifida

Obesity is an even greater health problem for people who have spina bifida. Obesity further limits mobility and self-help skills, leading to a spiraling problem of decreased energy use and weight gain, making it harder for the individual to keep up with peers in social and work situations. It adds to the amount of pressure on skin, thus increasing the already high risk of skin breakdown, particularly in areas that are insensate or become wet. Social rejection, which may already be a problem due to others' lack of sensitivity and understanding of disability, may be worsened.

And activities of daily living, particularly independence in dressing, continence management and hygiene, may be negatively affected by difficulties in moving a large, heavy body and decreased ability to reach private areas of the body.

Young children who have spina bifida usually grow at about the same rate as their peers because they are quite physically active. Small children grow rapidly and so they require a large number of calories for growth. As they grow older, however, children who have spina bifida, especially those who also have hydrocephalus, are at very high risk for developing obesity.

Even slight mobility problems make it harder for children who have spina bifida to be more physically active. These school age children become less active as they grown older.

Older children and adults have slower growth, however, and on average those who have spina bifida will not become as tall as their non-disabled peers. So, those with spina bifida have fewer requirements for growth, as well. Also, studies have shown that people with spina bifida have less lean body mass than their peers, and even when other factors like physical activity are equal, have a lower basic metabolic rate.

It is said that in some families, food is used to try to compensate for the child's disabilities. (“At least he or she can enjoy eating.”) It is hard for parents NOT to spoil their children a little more due to an illness. In this family though, we've learned to say no to Peter as needed.

Becoming an Young Adults With Spina Bifida

noreply@blogger.com (Baolam Greystorm) — Tue, 12 Feb 2013 07:24:00 -0800

Find and like Peter on Facebook!

The transition from adolescence to adulthood can be a time of growth and success, as well as difficulty.

For people with spina bifida, it is especially important to begin planning for transitions in childhood so they are able to lead independent lives as adults.

Young adults affected by spina bifida can face challenges, such as:

Learning to take care of their own health needs.
Working.
Going to school.
Volunteering.
Finding and using transportation.
Living outside their parents’ home.
Developing healthy relationships.

Physical Health – What to Expect

Young adults with spina bifida can provide or manage much of their own care. Some examples include:

Finding new doctors that care for adults affected by spina bifida.
Obtaining medical insurance if they are no longer covered under their parents’ health plan.
Talking to health care professionals about their condition.
Making doctor appointments.
Ordering or reordering medications and supplies.
Seeking immediate medical help when needed.
Managing their own bathroom plan.

Physical Activity

Regular physical activity is important for those with conditions that affect movement, such as spina bifida.

CDC recommends 60 minutes of physical activity a day. There are many ways for people with spina bifida to be active. For example, they can:

Roll or walk in the neighborhood.
Lift weights.
Participate in sports activities (for example, swimming) and teams for people with or those without disabilities.

Stretching, regular massage and strengthening exercises for the legs help Peter with his posture and movements. Some minutes per day is good enough if more is not possible.

Spina Bifida Cares for School-Aged Children

noreply@blogger.com (Baolam Greystorm) — Tue, 12 Feb 2013 07:20:00 -0800

Art by Gibert Legrand

Starting school brings children into regular contact with the larger world. Friendships become important and physical, social, and mental skills develop rapidly during this time.

Children who feel good about themselves are more able to resist negative peer pressure and make better choices.

This is an important time for children to become more responsible and independent. This is also a good time to start exploring potential lifetime interests such as hobbies, music, or sports. Developing independence can be challenging for people affected by spina bifida. It is important to begin working on this process early in childhood.

In School

Many children with spina bifida do well in school. But some difficulties at school is usual, especially children with shunts that are used to treat hydrocephalus (often called water on the brain). These children often have problems with learning. They might have difficulty paying attention or work slowly, be restless, or lose things. They also might have trouble making decisions. There are activities that children can do both at home and at school to help with these problems. Healthcare professionals can provide information about these activities.

Individualized Education Plan (IEP)

An Individualized Education Plan is important because it will help children develop skills at school. Children who participate in special education classes will have an IEP. An IEP is a legal document that lets the school know what kinds of assistance will be needed by a child during the school day. An IEP is created by parents and school personnel, such as a psychologist, teachers, a school nurse, and a physical education teacher, as well as any other professionals that parents think might be helpful.

504 Plan

If a child does not qualify for an IEP, parents can request a 504 Plan be developed for their child at school. Usually, a 504 Plan is used by a general education student who is not eligible for special education services. By law, children may be eligible to have a 504 Plan which lists accommodations related to a child’s disability. The 504 Plan accommodations may be needed to give the child an opportunity to perform at the same level as their peers. For example, a 504 Plan may include the child’s assistive technology needs, such as a tape recorder or keyboard for taking notes and a wheelchair accessible environment.

Having a 504 Plan has helped Peter by getting the school nurse and counselor to work together with us to prepare and manage his self care plan. It helps Peter stay on track. It has worked really well.

For more information, please visit the Spina Bifida Association website.

Toddlers and Preschoolers Coping With Spina Bifida

noreply@blogger.com (Baolam Greystorm) — Tue, 12 Feb 2013 07:12:00 -0800

Peter Posing Alongside His Brothers

Life with a toddler or preschooler is fun and but challenging. These young children experience huge mental, social, and emotional changes.

Just like all the other children their age, they have a lot of energy and enthusiasm for exploring and learning about their world.

Peter Sits at a Chair While Brothers Fishing

Parents should start helping their child develop independence early in childhood. However, developing the necessary skills can be especially challenging for children with spina bifida.

Encouraging Independence

For toddlers and preschoolers with spina bifida, there are many ways that parents and other caregivers can help them become more active and independent, such as:

Teaching the child about his or her body and about spina bifida.
Encouraging the child to make choices, such as between two items of clothing.
Asking the child to help with daily tasks, such as putting away toys.

Children with spina bifida might need extra help at times. But it is very important that children be given the opportunity to complete a task before help is given. It is also important that parents give only the help that is needed rather than helping with the entire task. Parents must learn the difficult balance between giving the right amount of help to increase their child’s independence and confidence, while at the same time not giving the child tasks that cannot reasonably be completed―which might decrease their child’s confidence.

Physical Health―What to Expect

No two children with spina bifida are exactly alike. Health issues will be different for each child. Some children have issues that are more severe than other children. With the right care, children born with spina bifida will grow up to reach their full potential.

Mobility and Physical Activity

Children affected by spina bifida get around in different ways. These include walking without any aids or assistance; walking with braces, crutches or walkers; and using wheelchairs.

Children with spina bifida higher on the spine (near the head) might have paralyzed legs and use wheelchairs. Those with spina bifida lower on the spine (near the hips) might have more use of their legs and use crutches, braces, or walkers, or they might be able to walk without these devices.

A physical therapist can work with children, parents, and caregivers to teach them how to exercise the child’s legs to increase strength, flexibility, and movement.

Regular physical activity is important for all children, but especially for those with conditions that affect movement, such as spina bifida. There are many ways for children with spina bifida to be active. For example, they can:

Engage in active play with friends.
Roll or walk in the neighborhood.
Enjoy parks and recreation areas with playgrounds that are accessible for those with disabilities.
Participate in community programs, such as the Early Intervention Program for Infants and Toddlers with Disabilities and Special Education Services for Preschoolers with Disabilities, which are free programs in many communities.
Do exercises recommended by a physical therapist.

Caring for Infants With Spina Bifida

noreply@blogger.com (Baolam Greystorm) — Tue, 12 Feb 2013 07:08:00 -0800

Having a new baby is an exciting and challenging time. New parents often feel many different emotions―such as love, joy, happiness, worry, and exhaustion. The same is true for parents who have a child affected by spina bifida. However, in addition to adjusting to life with a new baby, parents of a child with spina bifida also need to learn as much as possible about the condition to prepare for the needs of their child.

Learning about Spina Bifida

When parents find out they are going to have a child with spina bifida, it can be overwhelming. It’s important that they know that most children born with spina bifida reach their full potential.

It is very important for parents to take an active role in managing their child’s care. Parents need to know about spina bifida and understand the health issues and treatment options to make the best possible choices for the health and happiness of their child.

Parents should talk with a health care provider about any questions or concerns they have.
Parents can start learning about spina bifida by reading CDC’s Facts and Health Issues and Treatments spina bifida pages.
The Spina Bifida Association provides information on spina bifida, and can be helpful in recommending clinics or health care providers who are experts in the care of children and adults with spina bifida.

Before you read this section, it is very important to take caution NOT to think the worst scenario about your child's condition. Information is for awareness only. They may not apply to your child.

If it worries you, talk to your child's doctor. It can be very reassuring after talkint to a caring physician. It helped us a lot each time we talked to Peter's physicians.

Physical Health―What to Expect

No two babies with spina bifida are exactly alike. Health issues will be different for each baby. Some babies have issues that are more severe than other babies. With the right care, babies born with spina bifida will grow up to reach their full potential.

Open Spina Bifida

When a baby is born with open spina bifida, in which the spinal cord is exposed (myelomeningocele), doctors will perform surgery to close it before birth or within the first few days of the baby’s life.

Hydrocephalus

Many babies born with spina bifida get hydrocephalus (often called water on the brain). This means that there is extra fluid in and around the brain. The extra fluid can cause the spaces in the brain, called ventricles, to become too large and the head can swell. Hydrocephalus needs to be followed closely and treated properly to prevent brain injury.

If a baby with spina bifida has hydrocephalus, a surgeon can put in a shunt. A shunt is a small hollow tube that will help drain the fluid from the baby’s brain and protect it from too much pressure. Additional surgery might be needed to change the shunt as the child grows up or if it becomes clogged or infected.

For more information, please visit the Spina Bifida Association website:
Hydrocephalus and Shunts in the Person with Spina Bifida

Mobility and Physical Activity

People affected by spina bifida get around in different ways. These include walking without any aids or assistance; walking with braces, crutches or walkers; and using wheelchairs.

People with spina bifida higher on the spine (near the head) might have paralyzed legs and use wheelchairs. Those with spina bifida lower on the spine (near the hips) might have more use of their legs and use crutches, braces, or walkers, or they might be able to walk without these devices.

Doctors can start treatment for movement problems soon after a baby with spina bifida is born. A physical therapist can work with parents and caregivers to teach them how to exercise a baby’s legs to increase strength, flexibility, and movement.

Regular physical activity is important for all babies, especially for those with conditions that affect movement, such as spina bifida. There are many ways for babies with spina bifida to be active. For example, they can:

Play with toys, such as activity mats.
Enjoy parks and recreation areas.
Participate in community programs, such as the Early Intervention Program for Infants and Toddlers with Disabilities, which is a free program in many communities.
Do exercises recommended by a physical therapist.

Teens Living with Spina Bifida

noreply@blogger.com (Baolam Greystorm) — Tue, 12 Feb 2013 07:02:00 -0800

For Peter, this section will be helpful. Being a teen with spina bifida is especially scary thing.

Peter at uncle's wedding reception

Spina bifida is a severe case for Peter. It is mild enough to affect his study, but it is severe enough to disable him physically. He doesn't look it, but he lives it. Like some people, he has little or no noticeable disability. The condition limits the way he can move and function daily.

More fortunate than others, who might be paralyzed (unable to walk or move parts of the body), he is in foot braces. Whether or not we have been getting the right care, Peter is growing up well so far. The question is, can he lead a full and productive life? Will he reach his full potential at school and in later life?

Living With Spina Bifida
Adolescents and Teens

Many physical, mental, emotional, and social changes are associated with the adolescent and teen years. Teens and adolescents develop their own personalities and interests and want to become more independent.

This transition period can be challenging, especially for people affected by spina bifida. It is important for the parents and caregivers of adolescents and teens with spina bifida to take active steps toward making them independent starting in childhood, so that by the time they are older they can develop the necessary skills to help them reach their full potential.

Most teens will dress and bathe themselves, manage their bathroom plans, and move about independently in their homes and communities.

One also should participate in a seating or wheelchair evaluation at least once each year if they use a wheelchair. This will help the wheelchair to fit better and make moving about easier.

This goes the same for kids like Peter as well who are wearing orthopedic braces. The feet change continuously, so the braces must be checked, readjusted or new ones made. Shoes fitting is also very important.

Mobility and Physical Activity

A physical therapist can work with adolescents and teens to teach them how to exercise their legs to increase strength, flexibility, and movement.

Regular physical activity is important for all teens and adolescents, but especially for those with conditions that affect movement, such as spina bifida. CDC recommends 60 minutes of physical activity a day. There are many ways for teens and adolescents with spina bifida to be active. For example, they can:

Engage in physical activities with friends.
Roll or walk in the neighborhood.
Lift weights.
Participate in sports activities (for example, swimming) and on teams for people with and those without disabilities.
Attend summer camps and recreational facilities that are accessible for those with disabilities.

Source: CDC.GOV

Diagnose Spina bifida

noreply@blogger.com (Baolam Greystorm) — Tue, 12 Feb 2013 06:51:00 -0800

What would a mother do if her stillborn child is diagnosed with Spina bifida during pregnancy? Will there be choices to be made?

During Pregnancy

During pregnancy there are screening tests (prenatal tests) to check for spina bifida and other birth defects. Talk with your doctor about any questions or concerns you have about this prenatal testing.

AFP - AFP stands for alpha-fetoprotein (sounds like: al-fa–fee-toe-pro-teen), a protein the unborn baby produces. This is a simple blood test that measures how much AFP has passed into the mother’s bloodstream from the baby. A high level of AFP might mean that the baby has spina bifida. An AFP test might be part of a test called the “triple screen” that looks for neural tube defects and other issues.

Ultrasound - An ultrasound is a type of picture of the baby. In some cases, the doctor can see if the baby has spina bifida or find other reasons that there might be a high level of AFP. Frequently, spina bifida can be seen with this test.

Amniocentesis (sounds like: am-knee-oh-sin-te-sus; hear how “amniocentesis” sounds) - For this test, the doctor takes a small sample of the amniotic fluid surrounding the baby in the womb. Higher than average levels of AFP in the fluid might mean that the baby has spina bifida.

In my case, the diagnosis was made after the Peter was born. He was then scheduled for spine surgery at age 6 months. But Spina bifida occulta might not be diagnosed until late childhood or adulthood, or might never be diagnosed as the doctor later told me. When it is mild enough to miss all diagnosis, then maybe the person is well and normal. That's a good case. I wish that has been the case for Peter.

Types of Spina Bifida

noreply@blogger.com (Baolam Greystorm) — Tue, 12 Feb 2013 06:50:00 -0800

The three most common types of spina bifida are:

Myelomeningocele, Meningocele, and Spina Bifida Occulta

Find and like Peter on Facebook, Click here.

Myelomeningocele is the most serious type of spina bifida. With this condition, a sac of fluid comes through an opening in the baby’s back. Part of the spinal cord and nerves are in this sac and are damaged. This type of spina bifida causes moderate to severe disabilities, such as problems affecting how the person goes to the bathroom, loss of feeling in the person’s legs or feet, and not being able to move the legs.

Another type of spina bifida is meningocele. With meningocele a sac of fluid comes through an opening in the baby’s back. But, the spinal cord is not in this sac. There is usually little or no nerve damage. This type of spina bifida can cause minor disabilities.

Spina bifida occulta is the mildest type of spina bifida. It is sometimes called “hidden” spina bifida. With it, there is a small gap in the spine, but no opening or sac on the back. The spinal cord and the nerves usually are normal. Many times, spina bifida occulta is not discovered until late childhood or adulthood. This type of spina bifida usually does not cause any disabilities.

Source: CDC

Folic Acid, Cheap Vitamin That Saves Lives

noreply@blogger.com (Baolam Greystorm) — Tue, 12 Feb 2013 06:48:00 -0800

There's a common misconception that

taking folic acid during pregnancy is optional.

What Should You Know about Spina Bifida?

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Spina bifida is the most severe congenital abnormality compatible with life.

Spina bifida is a major birth defect of a person’s spine. With good quality medical care people with spina bifida can reach their full potential. If you have spina bifida, or know someone who does, it’s important to get the facts so that you can make the best possible health care choices.

Awareness of folic acid is now lower

than it was in the early 1990’s.

Spina bifida is a condition that affects the spine and is usually apparent at birth. It is a type of neural tube defect (NTD).

Spina bifida can happen anywhere along the spine if the neural tube does not close all the way. The backbone that protects the spinal cord does not form and close as it should. This often results in damage to the spinal cord and nerves.

Spina bifida might cause physical and intellectual disabilities that range from mild to severe. The severity depends on:

The size and location of the opening in the spine.
Whether part of the spinal cord and nerves are affected.

The long term costs associated with living with spina bifida include: repeated complex surgeries affecting the spine, brain, legs, feet, kidneys, bladder, bowel; immobility, shunt malfunction, epilepsy, kidney failure, osteoarthritis, scoliosis, organ compression, skin breakdown, ongoing pain management (including medication), specialist equipment (wheelchairs, orthotics, catheters, cars) and treatment for stress and depression. All this is before we even consider social care and welfare benefits.

Source: Politicshome.com, cdc.gov

Doing Your Best

noreply@blogger.com (Baolam Greystorm) — Tue, 12 Feb 2013 06:30:00 -0800

One of the possible risks of having spina bifida is losing the ability to walk. Surgeries, infections and other changes are constant risks of further disabilities.

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Being able to walk is a blessing to Peter. Others may take it for granted. But not for Peter. He walks with a limp foot and braces. Walking is not an ordinary task. It gives him power. Movement means a world for kids like Peter.

How is he going to keep this power? Frequent movements, gentle exercises and good nutrition are the tasks Peter rely on to maintain good movements. That's pretty much how much he can do for himself.

Published on Feb 10, 2013

Lakota East High School wants Ellen to be a part of their Lip Dub! The proceeds will benefit children with Spina Bifida. Share this video and help us GET ELLEN!!! @EastDub

Split Surgery

noreply@blogger.com (Baolam Greystorm) — Wed, 24 Nov 2010 10:46:00 -0800

Split is a type of surgery done to a foot common with spina bifida. It has been 4 years since his split surgery to his right foot.

The purpose of that surgery was to balance and even out the pull of the main tendons on the foot. Like most surgeries, success is slim. This surgery is no exception. The turn on his foot is minimally changed. Stiffness and other conditions result from this inside turning of the foot is bothersome to him everyday.

Four years ago, his right foot was slowly being pulled inward and up. That pull worsened to the point that it was no longer possible to set the foot flat on the ground as he walked. Today, after all that was done, it is not flat either.

Peter and Ryan, his supportive brother

Peter went through the surgery. It was the third major surgery for him. We crossed our fingers. That operation was done at Shriner's Hospital for Children, Springfield Massachusetts. If anyone is interested in finding more details about this surgery or have other related questions, you're welcome to contact Shriner through their website.

Post contributed by Ryan

Time Around the House

noreply@blogger.com (Baolam Greystorm) — Fri, 30 Apr 2010 04:42:00 -0700

Peter's daily schedule ties around his time for med and self care. Plus being hard to walk keeps him at home a lot. We've moved and no longer live next to a neighbor with a set three boys just like Peter and his brothers.

In the winter time they used to knock on our back door to play with the boys and in the summer time they looked out their window for the first sight of my boys going outside to join in with them. Here's Peter's story of their company.

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A Favorite Person and Helpful Friend

Knock! Knock! Knocking on his door, I felt it like a wrinkled cactus in the dessert (dry field).

I called,"Hey,Antonio are you there?! I need you to help me finish some work in my garden!"

Where is Antonio? I wondered. I wonder if my gullible next door neighbor Antonio can help me.

with my problem. I think my garden needs a new style. But no one answer the door. So I left.

When I took a deep breath for a few seconds I enjoyed the aroma of their garden

on the way home. Looking at his garden gave me some new thoughts about the changes I need on the way home. The last time I saw him was a his birthday which was 4 months ago.

Later that afternoon I was watering the plants in my family's garden (alone), Antonio came along asking, "What did you need old friend ?". I explained to him that I had to change my garden style a bit so I'm taking part of his garden style and needed help. "If you need help with that,"Antonio said,"then we'll have to start tomorrow, for now let's accompany your brothers before they get cranky lol(laugh out loud)".

When we got there, we discovered they were were having a great time playing in the pool. So Antonio and I snuck back to Antonio's house to play his

video games for an hour or so. The first game we played was the longest which was Lego Batman Wars and the second was Mortal Combat. I left before curfew at (6:15p.m.) and went home for supper(dinner).

For supper I my mommy served a Vietnamese wrapper style menu called "Banh Xeo." You first mix the flour with the water then put in pan, much like you would with pancake mix, before cook add meat, shrimp and lettuce plus sometimes beans. Bank Xeo is one of my favorite dish.

One day during the winter months, I was working in my deep driveway(alone) then Antonio surprisingly came wondering what I wanted, "You need a hand with that heavy weight shoveling? It seems like its too much for you since you're struggling with it."
I suggested, "Maybe you should instead help crack and sweep the ice on the deck with me."

Journal/essay
Written by Peter, April 25,2010

It's always great when Peter finds some company. He reads most of the time when there is no hang out or other infrequent activities.

Spina Bifida and the Changes

noreply@blogger.com (Baolam Greystorm) — Sun, 11 Oct 2009 12:51:00 -0700

Things I have to do while coping with my health condition.

Before having my second surgery at seven, I did just as well as other kids. I ran as fast as other kids. They did not out run me. I did not have all these medicines I have to take now. I cannot tag other kids in the tag game. They always tag me. And now I have schedules for every time I have to go to the bathroom. It is too much work. I fall more easily when I try to pick up things. Not like before. A lot of my strength is lost. I cannot do the many things I did before.

I am not too happy with that second surgery. However, I began to exercise more by stretching my ankle tendons daily. I try to balance and walk with good posture. I try to walk instead of running and rushing even when I really want to.

My mom always suggests more physical activity for me. She just thinks that it would help me out a lot. I don't know though.

by Peter Tran

Why I Drag My Foot

noreply@blogger.com (Baolam Greystorm) — Sat, 26 Sep 2009 12:09:00 -0700

My brother Ryan wonders why I drag my left foot.

My little brother asks me this question because I drag my foot and the answer to that question, is that after I had my second surgery I lost control of my muscles all over my whole body and hardly can walk or stand or pick up a walker without help.

I am very thankful for all the support from the nice nurses and doctors I've ever met and because I had that surgery so I could live longer, because it deals with the problems I was born with. I have regained control of my body more now and I am almost normal.

When I said I regain control of my body more, I mean the whole body except the muscles in my left leg and foot. I think the blood is blocked from going into my foot, in other words my leg muscles bundle up and squish inside, blocking blood as it goes through my muscles leaving no heat and strength in them.

I wonder if someday a special technology can help me walk with less effort. In the meanwhile, let's try physical therapies.

by Peter Tran

How the Diagnosis was Made

noreply@blogger.com (Baolam Greystorm) — Tue, 22 Sep 2009 19:40:00 -0700

Right at first week when Baby Peter and I were ready to be discharged from Umass Medical Center, his doctor's attention was being drawn to a scar-like patch of skin on his lower back.

The layers of skin overlap several times right on the spine in the size of a nickle. A second exam from the medical team confirmed that it was Spina Bifida.

What was it? I didn't know. His doctor explained to me that the result of this condition was still too early to tell. And for the most fortunate, the condition never cause any symptom or health problem at all. That sounded minor didn't it?

Nevertheless, before we left the hospital, an appointment was set for six months later to do surgery on the spinal chord. The operation was L-5 laminectomy, which was simply understood as detangle the nerves and nerve tissues in the spinal chord. I was scared.

My stare at the doctor told him that I was stunt and did not want anything like that done to my baby. He went at length to explain why such a surgery was a must. It is not only a critical preliminary procedure for this condition but it most certainly would prevent any developmental problems in the near future. I was in fear.

But the doctor knew. He helped us through with this decision by giving more specific warnings and going over possible scenarios.   I was scared enough to say yes to the surgery. During those first 6 months my family and I looked forward to it with faith.

The first surgery was being performed in the operating room while my family and I waited. I held my breath most of the time. I kept looking at the clock and to the door to the operating room. I was in a chair half seated, half standing up, looking around and then pacing about in that waiting room.

It took longer from him to reach each stage of development but he did slowly make it through each step!

An Extraordinary Childhood

About being proud of what you have

Dr. Robin Davidson of Umass Medical Center

Peter Against Obesity

Special Concerns for Those With Spina Bifida

Becoming an Young Adults With Spina Bifida

The transition from adolescence to adulthood can be a time of growth and success, as well as difficulty.

For people with spina bifida, it is especially important to begin planning for transitions in childhood so they are able to lead independent lives as adults.

Physical Health – What to Expect

Physical Activity

Spina Bifida Cares for School-Aged Children

In School

Individualized Education Plan (IEP)

504 Plan

Toddlers and Preschoolers Coping With Spina Bifida

Life with a toddler or preschooler is fun and but challenging. These young children experience huge mental, social, and emotional changes.

Just like all the other children their age, they have a lot of energy and enthusiasm for exploring and learning about their world.

Parents should start helping their child develop independence early in childhood. However, developing the necessary skills can be especially challenging for children with spina bifida.

Encouraging Independence

Physical Health―What to Expect

Mobility and Physical Activity

Caring for Infants With Spina Bifida

Learning about Spina Bifida

Physical Health―What to Expect

Open Spina Bifida

Hydrocephalus

Mobility and Physical Activity

Teens Living with Spina Bifida

For Peter, this section will be helpful. Being a teen with spina bifida is especially scary thing.

Spina bifida is a severe case for Peter. It is mild enough to affect his study, but it is severe enough to disable him physically. He doesn't look it, but he lives it. Like some people, he has little or no noticeable disability. The condition limits the way he can move and function daily.

Living With Spina BifidaAdolescents and Teens

Mobility and Physical Activity

Diagnose Spina bifida

What would a mother do if her stillborn child is diagnosed with Spina bifida during pregnancy? Will there be choices to be made?

During Pregnancy

Types of Spina Bifida

Folic Acid, Cheap Vitamin That Saves Lives

What Should You Know about Spina Bifida?

Doing Your Best

Split Surgery

Time Around the House

Spina Bifida and the Changes

Why I Drag My Foot

How the Diagnosis was Made

Living With Spina Bifida
Adolescents and Teens