Elijah - an Angel Story

Happy to report only a couple of little seizures yesterday - Friday and he slept from 7:45 - till 6:45am this morning - now that's sleeping through the night. Well 6:45 was when I heard him. I have just put him off for a sleep and he is obviously still in recovery mode a bit like Julie and I. Thursday saw some seizure and Thursday night he was awake at 4:00 and did not go back to sleep. so Friday was a long day. I did go to work for an hour and needed to come home, I was pretty trashed and just couldn't quite face the day.

Talked to the specialist neuro yesterday and we will keep o the Cobazam until at least after the weekend and review moving him off it and review the whole seizure thing. We also asked if we can arrange for his ammonia levels to be checked and if high we could treat this to help reduce seizure activity - he is going to check this out as alcatine is not available in NZ. Likely we will have one in the next week. He is also going to follow up with the Children's Acute Assessment department as to why Elijah did not receive the care he needed for the 15-20 drop seizures and hour and why we did not see a doctor apart from the one who was there when we arrived but left @ 7. I will be checking with with him when we talk to find out the explanation.

Not the first time we have not be treated well - like when he was having like 200 drop seizure during the waking hours and hadn't slept for 2 whole days and the registrar doctor says - "seizure and lack of sleep are not related to one another and I'm not sure they are seizure after hearing our desciption and was not willing to spent 5 minutes watching the video I had taken" We were like and what planet are you on - she talked to the specialist who confirmed what we had told her and she admitted that we were right although she did not tell the specalist the amount of seizures he was having - neither did she note that - we know coz we have a copy of his hospital file. - hello

Julie is not flash today and so I have been looking after Francesca and Elijah today - doing ok have developed a new way to get him off to sleep - ear lobe massage. - until next time