Mucopolysaccharidosis..............or not
I love being a Dad. More specifically, I love being a Dad to three sons who go by the names of John-Michael, Benjamin, and Tanner. The only thing I have ever really been sure of is that I was meant to be their father. From the moment that nurse Eva handed my oldest to me just after he was born to last night as I calmed Mr. Ben down after a falling out with his mother, brother, and, well, the whole neighborhood, there has never been any place I would rather be than with them. I have traveled this country from coast to coast, Canada to the gulf, and even spent some time in South America. I have great moments and memories I could share (and have) about each stop on the way. But on Monday, in a small, cramped, conference room inside an elementary school, I had one of the greatest moments of my life. And of course, it revolved around one of my boys.
Even before Tanner was born, we knew he was going to have an uphill battle in life. The enlarged ventricles that had formed in his brain meant possible drainage shunts, no contact sports ever, developmental disabilities, and the stigma of being handicapped. However, nothing could have prepared us for what he would be like once he arrived. For the first year, he just laid there. No laughs, no interactions no expressions. Only a blank stare coming from a head that was three times bigger than his body . In talking to my Dad this week, he recalled at one point looking at him and "wondering if anyone was home". He was in and out of the hospital with seemingly a million different diagnosis. We were told he had failure to thrive syndrome, and looked at us like we were neglectful. Then, they said he had pyloric stynosis and would require immediate surgery, only to say sorry, he doesn't have that at all. Next, it was the genetic doc explaining how his stinky feet were the root of his problems (I never really did understand that one). They explained to us he would never walk, never function on his own, and that we needed to look at 24 hour nurse car for him for life. We were devastated and wondered how much worse it could get. Then came the day they told us he could be battling something else.
I remember so distinctly the doctor telling me not to research mucoploysaccharidosis, as it would scare us. And, as any father would, I went right home and looked it up. And it scared the hell out of me. Children with this condition stop growing at 7 and are dead by 10. For 3 long, excruciating days, his mother and I waited tensely for the results. When they came back, it was another "oops", and we were grateful for that. But I had had quite enough.
A neurosurgeon at Children's Hospital in Columbus (the same where Tanner was going) removed a brain tumor from my head when I was 17. But at the time we were searching for answers for my son, Dr. Kosnik was not seeing new patients. I called him anyway and begged him to see my son. I told him that my parents had trusted him with my life, and that I wanted to do the same with my son. He agreed.
When we took Tanner to meet him, Dr. Kosnik took one look and said "He has a big head. No big deal". He told us to enroll Tanner into the MRDD program in Columbus and see how he does. We did, and it was like turning on a light switch. Tanner immediately responded to the environment and made great strides with the Occupational and Physical Therapists. When he turned 3 he got leg braces and learned to walk with a walker. They cautioned us not to be too optimistic, as he probably would never walk on his own. But we were thrilled with the progress. 2 years later he kicked off the leg braces, put the walker away, and entered kindergarten (regular kindergarten) on time.
Through out his years at Chapelfield, he continued to get intense therapy at school and at home. He worked with PT's and OT's and other specialists in his Independent Education Program, and his mothers house was a revolving door of the same. He kept making wonderful strides but was still behind by the end of his 1st grade year.
As we came into this spring and he was finishing up second grade, we looked forward to his IEP meeting. He was running and jumping and able to read on a high school level and had overcome many of the obstacles that were identified just a year before. Little things like buttoning his own shirt and tying his shoes were major victories he had enjoyed. On Monday, as we sat in that conference room, I was on the edge of my seat as each person spoke.
First the program director spoke about his progress. She said she is amazed by him and his accomplishments. She called him one of the greatest success stories she had ever seen. Then, one by one, each of the other members of the panel spoke First the OT, then PT, then gym teacher, speech therapist, and his classroom teacher. And each of their conclusions were that Tanner no longer needs therapy of any kind. He has become one of the smartest and most active kids in his grade and no longer has the special needs stigma that he had required all his life. With tears in my eyes, I remembered and shared with them the story of that doctor who told us that he would never walk and certainly never function on his own. And I told them I wish he could see my son today.
I am so proud of my son and, as I told the team at Chapelfield and all my facebook friends, watch out - that kid is going to be the President some day.
Have a great day everyone!
Even before Tanner was born, we knew he was going to have an uphill battle in life. The enlarged ventricles that had formed in his brain meant possible drainage shunts, no contact sports ever, developmental disabilities, and the stigma of being handicapped. However, nothing could have prepared us for what he would be like once he arrived. For the first year, he just laid there. No laughs, no interactions no expressions. Only a blank stare coming from a head that was three times bigger than his body . In talking to my Dad this week, he recalled at one point looking at him and "wondering if anyone was home". He was in and out of the hospital with seemingly a million different diagnosis. We were told he had failure to thrive syndrome, and looked at us like we were neglectful. Then, they said he had pyloric stynosis and would require immediate surgery, only to say sorry, he doesn't have that at all. Next, it was the genetic doc explaining how his stinky feet were the root of his problems (I never really did understand that one). They explained to us he would never walk, never function on his own, and that we needed to look at 24 hour nurse car for him for life. We were devastated and wondered how much worse it could get. Then came the day they told us he could be battling something else.
I remember so distinctly the doctor telling me not to research mucoploysaccharidosis, as it would scare us. And, as any father would, I went right home and looked it up. And it scared the hell out of me. Children with this condition stop growing at 7 and are dead by 10. For 3 long, excruciating days, his mother and I waited tensely for the results. When they came back, it was another "oops", and we were grateful for that. But I had had quite enough.
A neurosurgeon at Children's Hospital in Columbus (the same where Tanner was going) removed a brain tumor from my head when I was 17. But at the time we were searching for answers for my son, Dr. Kosnik was not seeing new patients. I called him anyway and begged him to see my son. I told him that my parents had trusted him with my life, and that I wanted to do the same with my son. He agreed.
When we took Tanner to meet him, Dr. Kosnik took one look and said "He has a big head. No big deal". He told us to enroll Tanner into the MRDD program in Columbus and see how he does. We did, and it was like turning on a light switch. Tanner immediately responded to the environment and made great strides with the Occupational and Physical Therapists. When he turned 3 he got leg braces and learned to walk with a walker. They cautioned us not to be too optimistic, as he probably would never walk on his own. But we were thrilled with the progress. 2 years later he kicked off the leg braces, put the walker away, and entered kindergarten (regular kindergarten) on time.
Through out his years at Chapelfield, he continued to get intense therapy at school and at home. He worked with PT's and OT's and other specialists in his Independent Education Program, and his mothers house was a revolving door of the same. He kept making wonderful strides but was still behind by the end of his 1st grade year.
As we came into this spring and he was finishing up second grade, we looked forward to his IEP meeting. He was running and jumping and able to read on a high school level and had overcome many of the obstacles that were identified just a year before. Little things like buttoning his own shirt and tying his shoes were major victories he had enjoyed. On Monday, as we sat in that conference room, I was on the edge of my seat as each person spoke.
First the program director spoke about his progress. She said she is amazed by him and his accomplishments. She called him one of the greatest success stories she had ever seen. Then, one by one, each of the other members of the panel spoke First the OT, then PT, then gym teacher, speech therapist, and his classroom teacher. And each of their conclusions were that Tanner no longer needs therapy of any kind. He has become one of the smartest and most active kids in his grade and no longer has the special needs stigma that he had required all his life. With tears in my eyes, I remembered and shared with them the story of that doctor who told us that he would never walk and certainly never function on his own. And I told them I wish he could see my son today.
I am so proud of my son and, as I told the team at Chapelfield and all my facebook friends, watch out - that kid is going to be the President some day.
Have a great day everyone!
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