The good news is, she does seem slightly better today. There has been no retching aside from after giving meds (which have to go down as a bolus) and she has coped well with a gradual increase in her feed-which we are diluting with water to make it more tolerable- via the pump. She hasn't needed rescue meds today, although still severely dystonic we have managed between us with changes in her position, or keeping her on our knee. Also, she has managed her first smile since Tuesday. Tuesday!!! Can you imagine not seeing a smile for almost four days? We're beside ourselves. Also probably a little delirious since we have pretty much been consigned to the front room swapping Elin between us for all this time. But we've had a fantastic run with Elin, she hasn't been poorly for soooo long and knowing what some parents deal with we know only too well that we can't take for granted how well she has been. I guess we were 'due' a bad week. Thank god for the Summer holidays though!
Today was my birthday day out with my pals. Nine of us were going for the day to Chester on the train for cocktails and a meal and then more cocktails. As anyone with a large group of friends will know, it's tricky to get everyone together on one date. Hence my birthday day out was nearly two weeks early :-) I was really looking forward to it but of course, I had to cancel. I don't think Elin likes my birthday! (Anyone remember my 30th? Anyone? Yeah. It was BAD). Anyway my friends have been amazingly supportive as usual, calling and messaging, travelling home to see me anyway despite cancellation of bash and two of them brought an afternoon tea to me and a poorly Elin with cute little sandwhiches, scones, fizzy stuff and an amazing cake. I am a lucky girl, I love all of my friends so much. They just make everything easier, you know? Let's hope tomorrow brings the same amount of improvement for our girl. Oh if you're wondering how old I am this time- 34. But I feel 64. Probably look it too, especially this week! Can anyone recommend a good face cream???
Oh wouldn't you know the first smile in four days was for her Daddy?
Alternative afternoon tea.