Damonito went to see a palliative/hospice pediatric doctor this week. His epileptologist recommended this new doctor because he feels that Damonito has moved on to the next phase of Dravet Syndrome. No one really knows. It's all pretty uncharted territory with Damonito steering this ship. We are no longer leading but following him now.
One of the things this new doctor told us is through her career in hospice, she's had five other Dravet Syndrome kids. Damonito is the oldest. That's the good and the bad news. Good because he's beaten the odds so many times he's setting a precedent. He has always found his way back. Bad because we don't know how much time he has left but it doesn't feel like much.
Damonito will get a new bed and other equipment as he needs it. We will take each day as it comes and see it for the blessing it is. He is interactive and happy and that's what is important. We will make every moment count because the moments are limited.
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