I will be posting Mays update in a next few days but I wanted to add this.
Reality is just not social media; We all know social media is filled with lots of pretty moments, however we also know real life happen in the background. Yesterday was #dravetawarnessday my post was of the awesome time I had, but here is reality. It was 435 in the morning and I was getting ready to head to the airport and I received a call that Abigaile was in a seizure. Her bed camera was going off all night so I really was not surprised. I made it to the airport and on my flight without major incident. What did I do on a three-hour flight?
I read 2 research papers on her genetic mutation that I never have time for.
I wrote her meal plan out for the next week as she eats a ketogenic diet I have to weight every ingredient to .01 grams.
I researched a new neurologist as she is in transition from pediatric to adult care and the according to do list for insurance and primary care physician.
When I got off my flight, I found out has not used the bathroom for several hours due to a medical condition related to her Dravet Syndrome.
She was unable to stand or stretch her legs out and she was probably going to have another seizure in the next few hours.
I was surviving on 4 hours of broken sleep and I had to be awake and aware for any medical emergency because life threating seizures can happen at any moment.
When I got home, I could not unpack as she needed to eat and be medically attended to. The whole time I am debating to I give a medication that she could stop the seizure activity but with over use her body will and has been addicted to.
We went to bed at 830 but before I could go to bed, We have to hook her up to a hospital grad pulse/ox so if she does go into a seizure at night it will wake me up. I massage her legs and wrap her them in a special pillow case to help relax the nerves.
An hour after I fall asleep, the pulse ox goes off because the battery is running low and it unplugged when I was moving it closer to her bed. Throughout the night I had multiply warning from the pulse ox because the sensor was bumped. Or her heartrate dropped. Now this in not an inclusive list but I think you get a point.
After spending 4 days with close to 400 parents, caregivers, physicians and warriors I have learn we are the norm not anything special. I am asking for my friend and family to please help us find effective treatments and finally a cure for this debilitating disease. No donation is too small.
https://secure.qgiv.com/event/dsfcampaignpages/account/1778273 and click the link above
#CureDravet #DravetAwareness #DSFAmbassador
abigaile.org 