Friday, May 25, 2012

How it all started Part 1

Oliver was the perfect baby, he was worth every minute of the 40 hours of labor it took to have him. He slept well, ate well, grew well and met every milestone right on time. He smiled, laughed, rolled over, sat up, crawled,self fed, all on time. We never worried, not even for a minute, he was simply perfect.

Until it came to walking.

Oliver started cruising around on the coffee table and couch around 12 months, but was reluctant to take steps on his own without support. It was early yet, so we didn't really worry too much. Last summer he started taking steps by himself, and everyone warned us to "Watch out, he'll be all over the place now!" Unfortunately that never happened. From 16-22 months Ollie continued to struggle with walking. His legs seemed very tight, his knees didn't seem to bend the way they should, his feet pointed outwards and he had a very wide based gait. Everyone we talked to, including Drs seemed to think it was related simply to his joints and muscles. We knew at this point he was behind, but we still never worried it was something serious. We thought one day he'd just be more comfortable, and confident and truly take off. Until we lost our son Miles. We lost Miles on January 13th 2012 from multiple brain abnormalities and hemorrhaging. Dr.'s never pinpointed the exact cause, and the amnio came back clear of genetic anomalies, though it would never test for something as rare as MLD. We will never know if he also had it. (but in my heart I think he did)

As soon as we lost Miles my mind automatically went to that scary place. "What if something is wrong with Oliver's brain too?" So at 22 months we brought him to a pediatric physiatrist in Danbury who specializes in walking and movement in children. He diagnosed Oliver with tight calves, loose joints and low muscle tone. He prescribed PT 2x a week and would reassess in a few months. We asked him what would cause these things, and he said that it's just how some kids are. We asked if it could be neurological and  he said "Very, very rarely."

We started PT and had great hope that now everything would be okay. We were getting him all the help we could get! Oliver started Birth to Three PT a few weeks later. We signed him up for gymnastics and swimming to help with the low tone. We'd offer him cookies to get him to talk independent steps across the kitchen and house. We went to the park almost every day and practiced walking up the steps and climbing around. It broke my heart to see the other kids his age running and jumping all over the place, we realized that people truly take movement for granted. Why couldn't our son walk? Other moms would see him struggling to walk, holding our hands for support and ask us "Ohhh, just learning is he? How old?" we'd reply and sometimes they'd say something like "Well, everyone learns at their own pace. He'll get there!" or something along those lines and we'd hope they were right.

  Despite it all, we noticed his walking was only getting worse. How could this be? He could want so badly to walk to us, just a few feet away, and he would try, but his knees would pop backwards, he'd lose his balance and fall on his tush. Over and over and over again. He would cry and get frustrated and after all the falling was reluctant to keep trying because he was afraid.

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