Category - epilepsy

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How Early Intervention Helped Our Daughter Walk And Talk
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Purple Day—Our Epilepsy Story

How Early Intervention Helped Our Daughter Walk And Talk

Raising a child with intellectual or physical challenges is well, challenging. That’s why getting the support you need early on is crucial. Despite doctors telling us there was nothing wrong, we knew otherwise. Parents always know. We feel it in our gut. Mother’s instinct—it’s real and it’s powerful. Though her birth was unremarkable, when she was a few months old we started having concerns. Our already tiny baby girl was losing weight and the milestones that mark healthy development weren’t being achieved. True fear kicked in when our daughter stopped feeding. We were losing her and we fought to make doctors listen. By the time they did, our baby was in full “failure to thrive.” It was at this time, when Avery was eight months old and living full-time in the hospital, that we got a diagnosis. We heard the words, “Chromosomal Translocation Disorder” and “Rare Syndrome” and “We are so sorry.” We fed her through a nasal gastric tube and she began to gain weight and the colour came back to her cheeks. With her health and growth on track, we turned our attention to her development. What would a disorder like this mean for our child? What would[…]

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Purple Day—Our Epilepsy Story

When our daughter was eight months old she was diagnosed with a chromosome 3P deletion/duplication disorder. Doctors told us to expect some devastating things. Some came true, but thankfully most did not. The one thing they didn’t tell us to expect was seizures—those began when Avery turned three. We were caught completely by surprise.  One afternoon I put Avery down for her nap and when it seemed to last a little longer than usual, I went to check on her. When I stepped inside her room I knew something was wrong. There was vomit on her crib rails, she was blue, and she wasn’t breathing. I scooped her up, limp in my arms and called 911. I must’ve screamed because our son, who was six at the time, had come out from his room and was looking at me with the most fearful eyes.  I said, “Sebastian don’t be afraid, but in a few minutes some fireman are going to come through the door. They’ll help Avery.” I didn’t understand what was happening. I’d never seen her have a seizure. We didn’t know yet that she has epilepsy. I told our son to keep out of the way and that[…]

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