Monday, June 17, 2013

Two years of Father's Day Blessings

Two years ago, yesterday, my eight month old boy gave my husband the best Father's day present possible.  On that relief filled day, our child ceased having Infantile Spasms (IS).  On this Father's day, two years later, my little man never fails to amaze me.  I am overjoyed to share, being two months seizure-medication free, Mateo’s EEG results showed no sign of seizure activity!  It has been an exhausting two plus years, filled with tests, medications and constant worry; and we wanted to thank all the love, prayers and support many of you have given us.  To say we are feeling relieved is an absolute understatement.  We can move on from all of this knowing that our little man is our little miracle.   

Mateo and his Papa, early June 2011

Infantile Spasms(IS) in a many of cases, is incredibly difficult to stop, and detrimental to the function of the child’s brain.  In the beginning we learned that quite a few children sustain permanent damage from IS. At the time, our child had the luxury of already working with a neurologist during his initial onset.  Along with that, and maternal instinct that brought us there in the first place, he was quickly diagnosed and treated with the common treatment of high dose prednisone immediately.  For most parents a solution is not easy to find, and that was always forefront in our minds.   For that reason, I genuinely believe in educating our communities about what Infantile Spasms is, and how to spot signs early to avoid detrimental damage done to these special little babies.  

I welcome you to spread the word on this catastrophic seizure syndrome, so that other parents are given the tools to react as swiftly to which we were able.  There are quite a few neurology organizations out there, and I have chosen to become a mentor for other parents with the Child Neurology Foundation http://www.infantilespasmsinfo.org, in the hopes that I can provide positive advise to another parents in our similar circumstances.  The positive stories are few, and I believe that I can give hope to other terrified parents out there.  



We are now focusing on putting these times behind us, moving ahead with the normals of raising an almost 3 year old, chalked full of temper tantrums, potty training and running in sprinklers. We feel very blessed, and can only hope that our miraculous child's first few years, are the hardest he faces in his lifetime.  

3 comments:

  1. Beautifully said and I also want to add that you and Victor were the silent two that suffered and worried though it only made your family stronger. Good for you for getting involved to make a difference in other families Molly.

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  2. I can't express how happy I was to hear the great news!!! Can't wait to see you all next month!

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    1. We are looking forward to spending some time in the woods with you two!

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