Melorah
Written by JenniferMcM, published 4 months ago.
Melorah is our second child. She was greatly anticipated as there is almost five years between her and Amelia, our oldest. We hit a few bumps with Melorah during her first year. First, there was a dairy allergy. Then there was a febrile seizure at 5 months, with subsequent seizures following. Melorah had an EEG and a visit with her first neurologist. We were told not to worry, she would grow out of the seizure by 2 years old.
When Melorah turned a year old, she was quite verbal. Let’s face it, she had to compete with a very talkative 5 year old sister! Soon after her birthday, we noticed she wasn’t talking as much, again we were told not to worry. By the time she was 18 months old she was completely non-verbal. We were frantic. We didn’t know what was going on only that we were in a fight for our daughter to get her help.
It took years to get a diagnosis for Melorah. We were introduced to another family, whose daughter had Dravet syndrome. After Melorah’s local neurologist (at the time) refused to test her for the SCN1A gene mutation, we ended up in Chicago where the test was ordered. During this time, dravet,org (formally the IDEA League) was formed, and we were privileged to be a part of this group. We have found the support with the dravet.org that we could not get from our friends and family due to the connection to other families who live with this syndrome 24/7.
Melorah is now 11 years old. She still has seizures. The seizures are changing a bit due to puberty. Melorah still has “autonomic” events at night where she stops breathing, her heart slows way down or speeds way up (heartbeat in the 250s without a seizure) and sometimes she still has trouble maintaining a proper temperature. Overall, things have improved.
Through everything, she is a joy to our lives.
Jennifer, mom to Melorah Grace
www.LivingForGrace.blogspot.com
Written by JenniferMcM, published 4 months ago.
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