Last weekend of full high dose of steroids! yippee Sunday, 12 June 2011 at 18:51
Taken from my original diary on Facebook
Friday cannot come soon enough...when Charlotte for the week following that will be on a reducing dose of steroids to stop them. It is a completely tiring & stressful part of the treatment but thankfully for all involved should not be repeated to such a level. Going by how Charlotte is affected I can't imagine how she must be feeling physically or emotionally at the moment...and its so hard at her age for her to explain & express it fully. Not only is it tiring coping with the behaviour but keeping up with a variety of food to satisfy her MASSIVE hunger! Today she woke at 4.30am but I insisted she stay in bed til 5.30am. As soon as she was up she demolished a ham sandwich (2 slices of bread) & a dozen pringles. 7am bag of quavers. 8.45am cooked breakfast (2 sausages, bacon, fried bread), 9.45am bag of crisps, 10.30 ham sandwich, 11.15 aero bar, 12noon 3 chicken dippers & 2 smiley faces, 12.45 peas & roast beef, 3.00 ham sandwich, bag of quavers, 4pm 4 cocktail sausages, 4.30pm 2 cheese strings, 6 chocolate coins, chocolate cupcake, 5.45pm 2 malted milk biscuits...she then went to bed & I thought she was asleep by 6.15pm, however, at 6.25pm she has risen and asked for another ham sandwich, that's demolished and she's back in bed. This is what its been like every day, she's constantly asking "what else can I have to eat"?...the steroids have obviously given her a craving for savoury, particularly ham & sausage...but the downside is not been able to get a single piece of fruit into her at all.
We've not done much on our first weekend home. Charlotte has to take antibiotics every weekend...banana flavour & she hates it, so that along with the dissolved omeprazole tablet for the gastric irritation the steroids cause make medicine time a nightmare...altho we got it down to 30 mins this morning & not too many tears!
My brother Robert came down from Manchester for a few hours on Saturday to pick up a car and it was nice to see him. This morning Mum had Charlotte so I could go to Church and then after lunch at Mum's I have cut Charlotte's hair into a bob. The staff at hospital told me that cutting it shorter makes it easier to manage when she loses her hair. I explained to Charlotte why we were cutting it and its taken a few days to persuade her that I wasn't cutting it all off (think its cos she's seen me shaving Harry & Louie's heads! lol)...but she understands it is falling out & states quite determinedly that she's not wearing a hat! Its a long long time since her hair was this short as have been growing it continually with the occasional trim to thicken it up. She actually looks really cute, especially with her little chubby cheeks (caused by the steroids).
I have to take her temperature every morning & evening and have guidelines as to what to do depending how above normal she is...ultimately in most scenarios & always if she's over 38.5 I have to ring Poole & she'll have to go in. Thankfully so far, she's been fine...but then she hasn't really been anywhere or with anyone to catch anything!
My brother Robert came down from Manchester for a few hours on Saturday to pick up a car and it was nice to see him. This morning Mum had Charlotte so I could go to Church and then after lunch at Mum's I have cut Charlotte's hair into a bob. The staff at hospital told me that cutting it shorter makes it easier to manage when she loses her hair. I explained to Charlotte why we were cutting it and its taken a few days to persuade her that I wasn't cutting it all off (think its cos she's seen me shaving Harry & Louie's heads! lol)...but she understands it is falling out & states quite determinedly that she's not wearing a hat! Its a long long time since her hair was this short as have been growing it continually with the occasional trim to thicken it up. She actually looks really cute, especially with her little chubby cheeks (caused by the steroids).
I have to take her temperature every morning & evening and have guidelines as to what to do depending how above normal she is...ultimately in most scenarios & always if she's over 38.5 I have to ring Poole & she'll have to go in. Thankfully so far, she's been fine...but then she hasn't really been anywhere or with anyone to catch anything!
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