May 2012

Well I wish I had some more good news but Jordan likes to keep me on my toes....
May 14, 2012, Jay had just been back to work 1 night after 4 weeks off on stress leave. I think everything had finally caught up to him. Jordan’s health, dealing with trying to work while worrying about his family, stress etc. He said he felt a bit better after a few weeks off but was ready to return to work. Jay got home at 7:45am and I went to wake Jordy up for school, he seemed very tired but he just doesn’t want to wake up some days. As I was changing Jordan’s diaper and making his breakfast for school he started another seizure. His whole body was convulsing and his eyes were rolled back in his head. I knew this was going to be a big one. Travis went upstairs to get Jay from the bathroom as I laid Jordy on the floor on a blanket and started to time the seizure.  After 5 minutes we gave him the rescue meds and after another 5 minutes we called the ambulance.  The ambulance arrived and we recognized the EMT from the ambulance ride in February. He was great and grabbed Jordan carried him to the ambulance and off we went. As we arrived at the hospital the trauma unit was in emerg waiting for us. They gave Jordan another 2mg of lorazepam and started the dilantin via IV right away. After 65 minutes the seizure finally stopped. Throughout the morning we saw several doctors and nobody could seem to give us any answers as to why the seizures are getting worse. Jordan was sent up to the floor and admitted. We waited all day to see his neurologist and he never came. Finally around 7pm I needed to come home to see the other kids before bedtime and to shower and eat myself. When I got home I cuddled Zander and talked to Sam and Travis about their upcoming graduations. Sam from grade 12 and Travis from grade 8. I fell asleep on the couch and didn’t wake up till morning. Jay and I went straight to the hospital for what we knew would be a long day waiting to see the specialists. Jordan’s genetics specialist came to see me and asked me to sign consent to proceed with the next steps in his DNA testing for FG Syndrome and a few other disorders they hadn’t tested for yet. We finally got to see the neurologist and he spent a good hour with us answering questions etc. Jordan’s meds were increased and he was given a new rescue med that we had to learn how to administer since it is only available in a syringe and is usually only given once at the hospital. He now will be given 6mg of Midazolam after a 5 minute seizure and then another 6mg after 10 minutes and then call the ambulance if it doesn’t stop.  I guess we are at a point where we have to try anything to get these seizures to stop. Jordan’s neurologist was comfortable with us taking Jordan home as he knew we would care for him and allow him the time to recover he needed. Since last week Jordan has been very tired, sleeping lots and not keeping very much fluids down. He is still trying to recover from this seizure and doesn’t seem to be bouncing back very quickly. Jay and I are so appreciative of all of the support from friends and family. Tonight for dinner I made Jordan mashed potatoes and gravy his favorite and he ate about 1/3 of a portion that he usually would.  Better than nothing and day by day he will get better.