Well the start of last week wasn't too good. Me and Adrian both came down with colds, when I say we both, I mean I had a cold, and Adrian had the flu naturually!!! Anyway, thank goodness for grandad, as I crawled to the edge of the bed to pick up the phone to dial for SOS, he was awake and came and took Cameron to school and Amber to nursery. We are normally quite well people, and it just goes to show how difficult life can be when you are both ill, and life has to go on!
Amber continued to be brilliant, and towards the end of the week, her seizures were down to just one cluster a day, from 3-4 so that was brilliant. However, Saturday I thought I would grab some me time and sped off into town to do some window shopping, only to return to find that Adrian had made her her dinner, and it was lovely, but not the restricted diet that we have seen these big improvements from. So the upshot, 4-5 seizures on saturday, wouldn't eat yesterday and 3 seizures and generally not very happy and lively, to today, just as I was about to get her out of the car, full blown vomit!! so I fear all my good work last week, may have slid back to square one. She was so bright and alert last week it just goes to show, with whatever metabolic madness that is going on inside her little body, it needs to be treated consistently, and the slightest little upset can get us so badly off track.
The house move is going forward and hopefully we should be moving in around 8 weeks, so that is a big load off my mind. I don't know however, how we are going to fit this house into the bungalow, which is alot smaller. We have to put an extension on but that won't be immediate. The social worker has just come round to, and to my surprise, we are going to get 2 hours home help for 6 weeks, and 3 hours a week Direct Payments. So much better than last time.
One last thing that I nearly forgot to mention. The week before last I contacted a charity called the Muir Maxwell Trust because I knew they provided free of charge seizure monitors/alarms. Anyway our voucher came, and all you do is get a one of your health team to sign the form and then send to the company that provides the alarm. The alarm isn't actually appropriate for Ambers types of seizures however, but very good for noctural tonic/clonics etc. The lady at the end of the phone was very helpful. The web address is http://www.muirmaxwelltrust.com/.
Well thats all from me
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