Sunday, 3 July 2011

The rest of June- a little bit of calm

9th June
Having a better day today, still on half a litre but her heart rate has stopped dropping so far during this mornings sleep.....terrible night last night though with the wretched bloody alarm going off all night!!!
Got almost no sleep!
Drank pretty well today too.
Jazz took one step unaided towards me tonight!!

10th June
Much better today, I've turned her o2 down to a quarter and shes satting high 90's in her sleep.  Didnt alarm much overnight thank god!  But low heart rate alarm went off a few times during her morning sleep.
I took the rubbish out this morning and when I came back in, Jazz was standing on a chair!  Later in the afternoon she climbed into her toybox and had a lovely play.
o2 went back to half this afternoon.  She wasnt dropping too low, just to low 90's, but I figured a bit of extra help was ok.  Will see how she goes with trying to drop it again tomorrow.

11th June
Jazz is much better again, still on half a litre, will try to turn her down tomorrow.  She's been dancing (wiggling from side to side) since she was in ICU (when she was feeling better of course) Storm was listening to music today and she was dancing for him, she's such a clever girl!
Low HR alarm didnt go off during this mornings sleep.

12th June
Doing great!  o2 down to 1/4 overnight and she satted high 90's all night!  Low HR alarm didnt go off at all.
She hasnt been having as many siezures as she was.  I think its definately an indicator that she's coming down with something when she has up to 30 in a day.  She has her sleep deprived EEG on the 16th, should be interesting, I hope we get some answers

15th June
Jazz is doing brilliantly of course, still on a quarter of a litre o2, but could manage on an eighth, but i'll keep her on a quarter a little bit longer to build her strength a bit more.  Sally weighed her today, she put on 340g and is now 6.96kg!!  Yay!  Back to her March weight!!
Today she waved her hand and said 'bye bye', she's so clever!!

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