Josie's Diagnosis

After a long week at the hospital, we were finally discharged (officially) and are settling in to our new routine here at the house. Based on the EEG results Josie was officially diagnosed with epilepsy. There are lots of variations and we aren't sure just which type she has yet however, they've started her on anticonvulsant medication today. They (and we) hope to see some results within 2-3 weeks.

Her episodes have been increasing in frequency, between 30 and 50 a day now, each lasting only 1-3 seconds but it feels like a lifetime. Each time we see her have one then smile up at us it just breaks our hearts and makes us feel totally helpless. Again, she's oblivious to them happening. Just today she was talking to me, paused, had a seizure, then finished her sentence as though nothing had happened.

She's still got to endure more testing in hopes to find out what is causing the epilepsy as well as drill down on which drug(s) will be most effective for her. She needs to have an MRI, and spinal fluid extracted for testing next Tuesday and will be under general anesthetic so please send her your good thoughts. She's a trooper but is learning to hate nurses and band aids. Sophie is no fan of these tests either as she's been by Josie's side almost non stop through this whole week. During one dramatic blood extraction during which some intern was doing the poking, Sophie looked up at me and said "We better tell Dad all about this".

I never imagined what it would be like to spend time in the Children's Ward of a hospital. It was heartachingly sad but I can tell you that there were so many kind people who poured their hearts into their jobs. They actually have a "toy nurse" whose job it is to bring in fun toys to distract the kids while they are having tests done. Josie enjoyed making a mess of the floor, table and nurses hair with a Buzz Lightyear bubble blower while getting her blood drawn. Yesterday two puppies were brought into the ward so the kids could pet them and hold them. And much to our roommate's excitement, two members of the Wellington Lions stopped by today to autograph posters and pose for pictures.

Thanks to everyone for your thoughts, prayers, well wishes, meals, babysitting and shoulders to cry on. We're lucky to have such great family and friends both near and far. And for those of you far away, feeling helpless, I am sending you a virtual pile of laundry to wash and fold.  We love and miss you all.