On this weeks episode of ‘You can’t make this shit up’ Everly had another catastrophic seizure on Friday, just 2 days after increasing her medications. It required a 000 call, 3 paramedics and 1 intensive care paramedic for the 2nd time in a month. I truly thought we might lose her and I panicked, badly. She seized for 2 minutes which is a long time for her and wasn’t breathing for almost 7 minutes in total, following she required almost 50 minutes of oxygen therapy. It felt like a lifetime. Dravet has not been kind to us lately but I’m hoping now we finally got ahold of her Neuro and with medication adjustments the seizures will calm down. 🤞🏼 Beautiful Hazel went with her Pa on Saturday to go and get her ears pierced, she is obsessed with herself and I’m loving every minute of it. Monday rolls around and we spent the 4hrs in the car and the rest of the day at the Royal Children’s Hospital. The neurologist was running late, Everly was completely over it and having massive behaviours alongside seizures. Leaving the appointment was heavy, so so heavy. I will do a video update in time. I came home to Marlee and Hazel being totally disregulated with huge behaviours and it took every ounce of strength I had to help soothe, settle and give them the patience they deserved. But I did it … I spent Tuesday being a sloth trying to process what on earth went on the day before. The changes, the detail and the information neurology presented was, a lot. Wednesday Everly wakes up with cold symptoms, we do a rat test and before it’s even finished absorbing shows positive for RSV. I do a second test to be sure and same thing. NOOOOOOOOOO! Everly hasn’t been sick in 3 years, and now she’s sick twice in 1 month?!? Instant PTSD flare up from the 7am seizure I managed alone in May, I’d only just started sleeping again since.. I’m assuming she contracted it from the hospital visit, because she hasn’t been anywhere else. The last time Everly had RSV she was 22 months old and her father decided it was ok to have her around someone with a ‘sniffle’… I spent 10 days battling to keep her well and at home whilst he refused to help. She then had a 90 minute seizure at 6am which resulted in her being placed into an induced coma and transferred to the closest children’s hospital. I’m so so scared. The Paediatric Intensive Care Unit is a place I never wish to be again in my lifetime… Thursday, no staff so just me and the girls and I spent 10 hours on my feet battling. Fluids, temperature regulation, medication, feed, saturation checks, mobility assistance, accident prevention, more fluids, behaviours and Everly just feeling all round terrible. I didn’t shower, I didn’t change, I forgot to eat and drink…. I didn’t stop, all day! Now my darling Hazel is showing early symptoms and when she gets sick, she goes down hard. Not to mention I’m still having mouth issues from my wisdom tooth extraction a week ago. I love our weekly story times guys, and honestly I truly couldn’t make this shit up. Send us your healing vibes, we need it ✌🏼 💜 #storytime - @medicalmumma