errrr – in a word, no.
So firstly the admission of which balls got dropped (as it were)
- I sent Giles to school without the spoon for his apple crumble desert. Please don’t get the idea I have been lovingly preparing apple crumble just for his packed lunch – the Ambrosia ones are on special offer in Tesco. He just drank the crumble bit out the pot and left the rest – and hasn’t complained so hopefully got away with that one (although it was noted that I hadn’t packed any lunch for the Cheetahs).
- I forgot to order any more Vanish in the Tesco order. Ho hum, the world’s not ended yet – and as I have quickly learnt, when you have a child whose nose bleeds, buy cheap sheets and throw them away if necessary.
- I failed miserably to save a spreadsheet for work (resolved from the save in the ‘cloud’) and was an extremely grumpy colleague/friend/Rainbow leader/wife/mother yesterday.
and I nearly stood on one of the Dino Brothers. *cue dramatic music*
I freely admit I am not good without quite a lot of sleep. I also freely admit that at the moment I’m not sleeping very well as I seem to spend quite of lot of time lying there waiting for the yell of ‘nosebleed mummy’. And at 01:49 on Thursday morning, the yell came – and that little nose proceeded to pour for the next 20 minutes.
It doesn’t help that it was the coldest night of the autumn so far and my central heating drugs (I have Reynauds Syndrome and take a concoction of drugs to keep me warm) hadn’t kicked in. So cold, tired, with the Ehlers Danlos Syndrome reminding me that it’s never completely disappeared, I had just dropped off when the shout came.
Giles takes the nosebleeds pretty much in his stride – so all stopped, cleaned up and snuggled under the duvet he was quickly back in the land of nod. I however, managed a whole 2 hours before he bounced in at 6am that morning. He spent the rest of the day on top (albeit in Cheetah Land) form whilst I crawled through…
Having chased the team at GOSH for his test results for the blood taken last Friday it transpires that Giles is a bit anaemic. This prompted the first of it ‘would it just be possible’ requests of the day. Bearing in mind that G’s principle diet at the moment is plain, reflux reducing stuff, it ‘just being possible to increase the iron in his diet?’ question didn’t meet with the most positive of responses. I try my best to get him to eat red meat, smuggle in the odd portion of lentils/spinach and give him dried apricots (to a degree, knowing the effects!) but when he swallows his nosebleed blood, feels rough, refluxes, doesn’t eat, refluxes etc the chances of him consuming a nice beef casserole with some leafy greens are a big fat zero. So I find myself asking if he can go on the meds – which costs the NHS money, may upset his stomach and involves different sections of the NHS talking to each other. Last time he had the iron supplements he grew, had more energy, ate better and was generally happier – I can see the advantages. They were supposed to ring me back today – I’ll chase them on Monday.
Next stop at GOSH – the ENT team. The delightful Dr we saw last week has failed completely to arrange the appointment to prepare for the next surgery. His secretary wasn’t overly surprised but was extremely helpful as I opened the conversation thanking her for the appointment that ‘she’ (ie her colleague in her absence) had arranged for us last week. The earliest we can be seen is the end of November and at that point he’ll go on the waiting list. So ‘if it’s just possible to manage until then…’. No choice on that one then.
Gosling Sports Park haven’t rung back either – Giles has decided that football is too stressful and is going to try gym instead (to help him learn to balance – one thing that many EDS sufferers have terrible trouble with). You’d think they’d have the decency to call back when someone says their child is unhappy – but could we possibly wait until it’s convenient with them?
In the meantime, the Cheetahs have been busy and came to Rainbows. When you get to the ‘news’ bit of the meeting and your son is the first to put his hand up and then presents ‘news’ about all the Cheetahs running together and falling over into a big pile which was very very funny you begin to be very thankful that you run the Rainbows with very good friends.
Strike the Dino Brother also came too. Having recovered from the shock of nearly standing on him – “he’s there mummy, next to you, can’t you see him?” he apparently recovered himself very quickly and will ride around on your head if you let him. Woohoo – must remember to check before I get in the shower.
I did include the Cheetah lunch again in the lunchpack today but they didn’t want to eat it. Giles’s beloved cuddly giraffe, Tesco (see his photo on our About Us page) went to school for the first time today. The Cheetahs have helped him manage the transition into the world of full time school so well but I think he’d had enough today. Good job too – 2 more nosebleeds this afternoon – sometimes your favourite cuddly is the best thing to have at school – whatever the rules say.
Some of the Cheetahs are off to Running Land for some fun over half term. Some of them are going to practice climbing up into Giles’ bed and sliding back down again – only the big ones though, the little ones aren’t very good climbers. Others are staying with us so they can come on our adventures – but knowing them, some may change their minds and come back from Running Land if what we’re doing looks more fun.
In the meantime, if we could all just possibly stay healthy whilst I try to juggle the work/life/half term balance, I’d be ever so grateful.