Sunday, July 13, 2014

In the Dravet community there is so much talk about Colorado.  Many Dravet families have moved there after hearing Charlotte Figi's story in order to have access to medical marijuana. For many Colorado could mean life or death for their kids.  I think a lot about Colorado every time Paloma has a seizure. She had a strange seizure yesterday.  It was in the middle of the day and most of her seizures so far have been between 4-7 am.  It is awful to wake up from a dead sleep to find your baby seizing face down.  We gave her the max dose of rescue medication (Valium) to make it stop.  Every time she has a seizure I feel totally helpless as I sit there and wonder if the rescue meds will work this time or if I have to call 911 again. I have put a lot of faith in Colorado being a miracle for us.  Recently though I have felt that I'm not supposed to put all my hope into CBD.  Maybe because I have met a couple of parents who it hasn't worked for their kids?  But nevertheless, we are proceeding on to try and persuade the military to send us there.  While I would like the option to try CBD we did not mention it in all our persuading letters for obvious reasons.  Colorado also means doctors who are familiar with Dravet syndrome, support groups, connecting with other families who are going through what we are and better weather for Paloma since her seizures are heat sensitive. We will be turning in all our letters this week.  Our neurologist who told us our last appointment he would write us a letter recommending that we be moved there but he did not come through.  I am still waiting on our letter from her pediatrician.  She has been great and I have no doubt that her letter will be of great  help to us. Paloma is normally pretty tired the day of and after a seizure.  She has been napping pretty much all day.  Here's to Colorado.  Fingers crossed!

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