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By @enablingevie, Apr 23 2012 10:04PM

After three weeks with no help from social services it seems we may finally be getting some support in the home for mum and baby possibly 3-4 hrs a day (cheers for that) !! Evie is a 24hr girl and probably will be for life, due to her issues with discomfort of her muscles and general irritation (well known that children with cerebral palsy never learn how to sleep properly unless sedated). Sleep deprivation is at its max now, for Evie and for James and I. Evie had her bloods taken today, a nurse comes to the flat, and we have a little yellow sharps bin for the needles etc to go in! makes my tummy turn! the results show she has low neutrophils which means effectively no immune system, which is expected at this point, so hand sanitiser and antibacterial spray at the ready!! No one with colds or germs can come near! Evie is still struggling with her feeds but the dietician seems wonderful and so empathetic of the situation. fingers crossed we can get her feeds up to 4 hourly as at the moment she is fed every 3 hrs day and night (each feed taking 45mins through a milk pump into her NG tube)when we are suppossed to attempt sleep is beyond me!! James had the pleasure of putting her NG tube in today for the first time, we just couldnt face a three hour wait in A & E again to have it put back! Well done daddy Shears, it was very hard for you to do but Evie knew you were doing it so that it could be done with love and care and by loving gentle hands xxx Aimey xxx

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