Our Journey Continues

Our journey continued with Becca and Ian each spending week in the NICU and on May 10, 2003 and May 11, 2003 when Becca and Ian, respectively came home from the hospital. We knew Ian had microcephaly, an abnormally small head, everything else seemed okay. Ian qualified for infants and toddlers from birth due to his traumatic entrance into the world. As he continued to grow, we started to see some other developments. He was having difficulty feeding; we could usually get him to drink but most of the time he would spit up. He had hypotonia — low muscle tone when muscles are on the loose, floppy side. Although hypotonia is not a well-understood phenomenon, children with low muscle tone often have delayed motor skills, muscle weakness, and / or coordination problems (from babycenter). During this time, we were living in Howard County and his pediatrician was wonderful, he was running numerous tests as well as consulting specialists to see if they had any insight on what was going on with Ian. We had seen many doctors during this time as well…pediatrician, endocrinologist, gastroenterologist and feeding disorders, orthopedists, pediatric neurologist and physiatrist. Some of these specialists we had gone to see more then one for second opinions. All of his doctors were/are either at Johns Hopkins, Kennedy Krieger or Mt. Washington Pediatric Hospital. In addition, Ian had a sleep study conducted as he was not sleeping through the night until he was 18-19 months old.

We always get the doctors notes sent to us, around the age of 2 ½, we received one which we found alarming. It was the first time we had seen written in words and told to us that Ian had diplegic {paralysis of corresponding parts (as the legs) on both sides of the body} cerebral palsy. Brian and I struggled with this diagnosis for many months, deep down we just did not think he had CP. There is a developmental pediatrician at Johns Hopkins/Kennedy Krieger who specializes in CP among other diseases; we decided to see him for a 2nd opinion. We were told that Ian was on the fine line of having CP, it could go either way and he could see where some would say he did have it while other would say he did not. One comment I distinctly remember is “Ian can do things that CP kids can’t do.” Looking back maybe I should have taken that comment differently then I did…don’t know what I would have done with it but…anyway. The MD said he would support us in our decision. We decided it could help Ian to have CP…medically issues as well as academic issues. So at the age of 3, Ian was diagnosed as having CP with unknown origin. He was getting physical therapy, occupational therapy, speech therapy as well as a resource teacher. He was making gains, I am not sure at what point and time I can say we started to see him plateaued or even digress…I do know looking back over the years it was a slow digression until July 4th weekend of 2009. Before this weekend, he was getting around well, could walk in the house without his AFO’s (ankle-foot orthoses (orthosis = brace). AFO’s are usually plastic encompassing the ankle joint and all or part of the foot. They are commonly used in the treatment of disorders that affect muscle function such as stroke, spinal cord injury, muscular dystrophy, cerebral palsy, polio, multiple sclerosis and peripheral neuropathy. AFOs can be used to provide support to weak or wasted limbs or to position a limb with tight, contracted muscles into a more normal position. Below is what they can look like, obviously not Ian as they are pink and we know pink is not his color…that would be blue (from http://www.pediatric-orthopedics.com and http://en.wikipedia.org/wiki/Ankle-foot_orthosis). Ian could get up and down the steps on his own, was not always the most elegant way but that is okay. He was able to get in and out of his bed on his own, could not completely dress himself but could assist us. I would say he was fairly independent. Then came July 4th weekend 2009.