Month: March 2018

2018 a new year

Hello 2018 We welcome a new year fresh with positive vibes and good thoughts. Last year was so hard and we didn’t get to update. We finally had spinal fusion two rods and successfully got through it / 8 days on life support before we decided to breath on our own and 6liters of blood loss but all good. Hips redone and bones healed. Epilepsy on the other hand has been the naughtiest !!!! Daily seizures. And a new non convulsive status we hadn’t seen which was happening almost daily – very frightening but thankfully at the time we were in hospital. It was one of the main reasons spinal surgery was cancelled three times plus the lovely melena – internal bleeding we seem to get. Since the last bleed I decided to change things myself. I took her off omeprazole and changed her to infant formula A2 milk I had been reading up about long term ppi use and how it actually can cause bleeds. Anyway after a month we had a review and …