When a child is diagnosed with Infantile Spasms, the child has already been affected long before. Larkin was diagnosed in 2006 when she was 5 months old. Larkin stopped everything. And by everything, I mean everything. No eye contact, no smiles, no laughs, not using her hands except to chew on them, no playing with toys, no interaction whatsoever of any kind. Until the actual startle seizures began, we had lost our little girl weeks prior. It was like having a child in a coma except her eyes were open and she would eat, poop and sleep. We lose these things off and on as we battle the seizures. Sometimes it’s eye contact, sometimes it’s appropriate play and more often then not we lose giggles and smiles. Eye contact and giggles are the best things in life. I promise you that. One day I want to hear “Mama” clearly but more importantly I want to hear her laugh and I want her to look at us. I captured this video when her laugh came back to us. We lost it again – but we get it back and I hope to never lose it again but if we do – we will fight. Enjoy this little clip from 2006. It’s what makes us fight. It’s the best sound in the entire world.
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Must…stop…hitting…play again.
Love that baby girl….