One Year ago, I sat in a Geneticists office answering medical questions about my son and Pauls and my family history One Year ago, I held Coleson as she evaluated his head, hair, fingers, spleen, liver and toes One Year ago, I heard, MPS, thats what I think this is as she handed me a kleenex box One Year ago, I heard that my sons life expectancy could be 6, 8 or maybe 10 yrs. One Year ago, I held Coleson in my lap as a lab tech searched for a vein to draw blood to no avail One Year ago, I stuck a urine collection bag on Coleson to confirm the diagnosis and typing One Year ago, I cried for the rest of the day, asking why him, why me?\ One Year ago, I stopped looking at my son as a normal 18 month old, and instead evaluated his every move, his every feature, his every word, comparing him to other kids and looking for signs that he did not have MPS One Year ago, our journey began... It really began at birth (actually at conception), though I wasnt informed of such. Yes, there had been several signs something wasnt quite right, his bi-lateral inguinal hernias, his Pectis (sunken chest), his failed hearing screen, his Dyastasis recti (abdominal muscles not fused)....all things know within the first few weeks of life but did not seem to cause concern to his pediatrician, nor his surgeon. There were several more subtle signs during that first year; he didnt crawl, couldnt point, didnt kick his legs during diaper changes, and more obvious signs; his head kept growing bigger and his body at a slower pace. Though I kept questioning these differences, it wasnt until his 15 month well visit that his pediatrician showed the first signs of concern... And since then, well much of it is in my blog and on FB. One Year later, I wake up with my son in my bed, hooked up to an IV overnight One Year later, I give him multiple medications morning, day and night One Year later, we go to the hospital every Monday for blood draws and weekly evals One Year later, we have therapists and nurses come to the house One Year later he has hearing aids and glasses (though I havent gotten the glasses yet) One Year later, he has dark curly hair instead of straight drk blond hair One Year later, I occasionally cry and say, Why him and why me? One Year later, I still evaluate his every move, his every feature, his every word, not compared to other kids his age but compared to his yesterday self. One Year later, I run after him as he runs down the street excited to get beyond the gate to the main street with lots of vehicles; yellow school buses, red fire trucks, mommys car (any silver SUV), big trucks And One Year later, he is still alive and his life expectancy can be into his 20s and possibly longer.
Posted on: Fri, 14 Mar 2014 02:41:43 +0000
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