Monday, April 30, 2007

Tonight is Monday - Last night Elijah woke at 10:30 and the last I heard of him was at 12:30 - he was dry and safe - not sure what time he went to sleep - at some point in time - he slept well this afternoon for several hours = he was tired. We have a new person providing care for Elijah - this is just Fabulous and we are using our carer support days at the moment - to give Julie space as well as giving our new carer T an opportunity to spend time with Elijah and also to meet the other people who look after him as well. T and Elijah get on like a house on fire for which we are grateful and so she is helping Julie with Elijah almost every day this week. Julie and I enjoyed having lunch together for the first time in a long long time and then we got the phone call to say Francesca had been pushed of the pay equipment at school and she now has a broken arm - this is the second in 8 weeks except different arm. It's a day at a time - Saturday night/Sunday am was relatively uneventful with Elijah - although Friday night/Saturday am was just horrible - he woke 12:45am - runny watery yukky pooh through everything - had to get Julie up to give me a hand - got him into the bath to clean him off and I had to deal with his bedclothes - and managed to loose a good portion of my dinner = vomiting - I have never ever had to deal with such a foul and awful disgusting smell in my entire life. It's really hard to do things with one hand - might have to get one of those clips that the synchronised swimmers have. I am so glad that we recently invested in disposable gloves and so with the help of half a bottle of disinfectant I was able to rinse the clothes in hot water and get them in the machine for a hot wash. Then I had to stitch up his other sleeping back (with fishing line) regular cotton is no match for our boy. Got him into bed and last saw the clock at 2:30am.

We are still waiting to here from the specialist about the seizure meds - if we keep the Clobazam a the same level - measuring his ammonia levels etc - patience is a virtue - however I will be on his case in the morning - till next time


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