Colton’s Cerebral Palsy (CP) was the result of his getting lodged in the birth canal during delivery. He sustained several hemorrhages (bleeds) in his brain and lost over six and half minutes of oxygen. Colton was born blue, and lifeless. He had a fractured skull, a fractured collarbone, Erb’s palsy (also known as Brachial Plexus Palsy, which involves nerve damage to five nerves known as the brachial plexus that control muscle movements of the shoulder, arm and hand), and seizure disorder to name just a few of his injuries.

Colton had to be resuscitated, and for a while there, it didn’t looked as if the attempts were going to work. Colton was put on a ventilator, and was rushed into Boston to the New England Medical Center by ambulance immediately after his birth. There, he spent many weeks in the Neonatal Intensive Care Unit where he remained on a ventilator for some time, continued to have seizures, was fed by a nasogastric tube, and underwent a myriad of tests such as MRI’s, CT scans, bloodwork, EEG’s, etc. It was touch and go for a while, but Colton fought every day, and somehow, miraculously, he beat the odds.

Colton came home from the hospital with a nasogastric tube. He could not nurse due to his oral motor weakness, and he had severe esophageal reflux. He had a gastroenterologist, a neurologist, a physiatrist, an orthopedist, an opthamologist, as well as many other specialists whom he saw regularly throughout the first few years of his life. In addition, he underwent weekly physical therapy, occupational therapy, and speech therapy. He sometimes had as many as nine appointments per week. In what little spare time we had, Colton participated in water/swim therapy, hippotherapy (therapeutic horseback riding), and transelectrical stimulation (TES).

Colton also wore a variety of orthopedic devices including leg braces, hip braces, knee immobilizers, bivalve casts, hand splints, weighted vests, and even a helmet (at times for certain activities). He used a wheelchair, a gait trainer, and various types of walkers in addition to his leg braces. At six months of age, Colton acquired the formal diagnosis of Cerebral Palsy (spastic quadriparesis to be specific), and his seizures were classified as a form of epileptic seizures known as focal seizures. Colton continues to be treated with medication for his seizures, and has gone through many, many seizure medications before arriving at his current regime which seems to be managing his seizures at long last.

Colton has had several surgeries and has undergone so many tests in his lifetime. Colton’s bilateral heelcord lengthening surgery made a significant difference in his gait, which improved dramatically once his casts came off six weeks post op. He had botox injections prior to the surgery, but the procedure caused him great discomfort, and I (his mother) did not notice a significant enough improvement to warrant continuing with that treatment modality. I will say, however, that botox does seem to work for many children, and every child is unique and their response to treatment will vary.

Colton used sign language for the first few years of his life. We were told that his injuries were so severe that he may never walk or talk, and that he may have learning disabilities. I am happy to say that Colton’s progress has been nothing short of miraculous. I look at him today, and I am astounded by the young man I see before me. To most, he looks like a normal, healthy eleven year old boy. To me, his mother, I see the child who worked for every milestone he met. If he couldn’t do something, he practiced and practiced until he could. He never gave up, and he believed in himself. He worked hard for every single accomplishment he’s made. When I look at Colton, I see a normal looking eleven year old boy, but I also see so much more. I see the boy who cried out in pain as he underwent tests and procedures, who struggled to walk and to learn to talk. I see the boy who, at three years old, would choke if he tried to eat a cheerio. I see the boy who was still in diapers at four years old. I see the boy who strengthened my faith in God, my belief in miracles, and who has taught me some of the most valuable lessons in life. He has been my inspiration, and I watch with pride as he works to inspire others. I hope Colton continues to work hard, appreciate his blessings, and find his purpose in life. I know he is off to a great start!

Colton’s issues have changed over the years. His reflux has subsided, and he is no longer on reflux medication. He can eat normally now, without the risk of choking. It is, however, a struggle for Colton to chew with his mouth closed, because it is still difficult for his body to coordinate breathing chewing and swallowing due to his weak mouth muscles. Given that the tongue is a muscle, and that cerebral palsy is a condition affecting his muscles, chewing and swallowing requires more effort on Colton’s part than it does for a typically developing youngster. Colton hates eating sandwiches, because he is not able to get bread off the roof of his mouth if it sticks. Most of us think nothing of using our tongues to get bread off the roof of our mouths. Colton does not take anything for granted. His oral motor weakness also affects his speech. He has to concentrate on talking slowly and over enunciating his words. He often has to repeat himself to people when and if they don’t understand him the first time around. Having CP takes great patience sometimes! Colton handles it all in stride. He is very aware of his issues and how they are perceived by others. He works hard to overcome the obstacles before him.

Colton’s fine motor issues are always a struggle. In addition to not having the coordination and fine motor strength to cut his own food, Colton struggles to be able to write, and he has accepted that he will rely heavily on the use of computers throughout his lifetime.

His physical limitations are such that Colton’s legs get tired when he walks for an extended period of time. He is more prone to muscle pulls and strains, and that is why it is very important that he stretch on a daily basis. His muscle tone is constantly fluctuating between low tone and high tone, and this can throw his balance off and make him more prone to falls and injuries. These next few years will be especially difficult, because Colton is growing at such a fast rate, and he has to constantly train and stretch his growing muscles to ensure that they aren’t too stiff and tight. Having Cerebral Palsy is a day to day struggle. Keeping up with friends is an ongoing issue. It can be very discouraging when kids run at recess, whether to another location on the playground, or in the course of a game, and Colton cannot keep up. Running, while fun when he is doing it by himself, can be very frustrating when doing it in a group. Colton works hard to keep up with his peers, but his run is slightly different, just as his gait is. Colton does not have the speed of his peers, and he tends to hold his left arm in close to his body when he runs for balance. Having one or two friends who are aware of his struggle on the playground, and who wait up for him, can make all the difference in the world.

Colton has had seizures since birth as a result of the injury and trauma to certain areas of his brain. Colton’s seizures continue to be a concern, however, he has been seizure free for well over a year now. We are excited, but at the same time, we know from experience that seizures are unpredictable, and that although certain medications can work for a period of time, they can also cease to work which requires medication changes. Sometimes fevers, growth spurts, illness and stress are the cause, and other times, the cause is unknown. Colton has had his share of unexplained seizures, as well as his share of medication changes. Seizures will always be a concern.

In Colton’s case, the issues he faces can not necessarily be seen on the outside from those looking in. To most, he looks like a normal eleven year old child. Behind closed doors, there are many daily struggles that take place, and both the physical issues and the emotional issues (like fitting in, making friends, etc.), remain constant. Colton’s CP is a lifelong condition, and though the issues may change over time, they will never completely go away. Living with a disability takes hard work, patience and faith. To Colton, and others like him, I say keep your chin up, and believe in yourself. For every person who makes your life difficult, remember, there are a lot of kind and caring people out there too. Keep the faith!