Saturday, November 22, 2014

Just popping in quickly to give an update. I will keep up with this blog better when life settles down a bit and we are in our own house. This week was up and down for us, two trips to the ER, lots of seizures and rescue meds. Thankfully, we were approved for our Hemp card to treat Paloma's seizures with cannabis oil. This is a huge deal in the Dravet world.  So many families are leaving their homes and moving to Colorado in order to try it.  I went in to the doctors office prepared to have to fight with him on the issue but instead he was very supportive and immediately filled out the paperwork for us. Of course he also gave us the speech about the next drug he would like to try.  I politely declined.  The tricky part is actually getting the oil in hand.  Since we are in Utah and it's not a fully legal state it can be a challenge to get it here.  We are currently at the top of the list for Charlotte's Web and I have a few other sources in the wood works.  It might take some time to see a difference when we start.  Just like with other drugs we may need to adjust dosage and strain.  I know it's not a miracle or a cure but from what I have read from other Dravet families I am hopeful that it will provide a better quality of life for Paloma, maybe not seizure free but I can live with the occasional seizure.  We had the opportunity to be part of Face of Cannabis recently.  It's a project that seeks to put a face to children fighting to get cannabis to treat their sickness.  It was shared all over facebook and to see strangers praying and fighting along with us on this journey was overwhelming and made me feel a little less alone in this. 

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