Living with Cerebral Palsy 🍋🍋

Friday, 28 October 2011

Not so happy half term

Had been looking forward to half term after the term from hell with all of Elin's problems in the past few weeks. It was looking good, seizure free and full of smiles for two whole weeks at the end of term- great. However my sense of unease began on Monday of Half Term when she slept all day. Then coughed, and wheezed and coughed some more. Slept all morning tuesday, waking only to retch or cough. Got her into the G.P Tuesday afternoon, he confirmed a rattly chest and prescribed antibiotics- yessss! Surely they would sort her out I thought, they usually do. Wrong. Wednesday and Thursday passed in a blur of no sleep and one very poorly, lethargic, floppy sad little girl. Thursday night brought a seizure needing rescue med after a day of strange shaking activity which could not be classes as a seizure as it stopped when you picked her up. This began again on Friday which prompted a visit to the lovely blue angels on Children's Ward and our fave young doc. Slightly stumped by the weird shaking we agreed together - after conferring with two consultants- that she could not be having a seizure as it stopped each time I picked her up. Hmmm. Work than one out. Anyway, was given a new type of antibiotic to deal with the cough and retching and came home hopeful of an improvement. Sadly Elin decided otherwise and had another fit requiring rescue medicine just before bed. Which brings us to now and I fear we may be back on the Ward tomorrow. We have not seen her smile since Tuesday, just look distant and poorly and confused. Never seen her like this. Also added worry that this is not related to her illness and instead is something being caused by the recent change in her Epilepsy medication at which point it's hard to say what to do as she has to stay on the new medicine regime until December. I should be in Edinburgh right now for two nights enjoying a Uni reunion, but cancelled the tickets on wednesday as it became clear she just wasn't getting any better and despite protestations from Paul I just felt instinctively that this was a problem that wasn't going to resolve easily how right was I? So instead I am literally worried out of my head yet again and feeling useless and hopeless. When is Elin gonna get a break?? When are we???

Sunday, 16 October 2011

Tesco is tough..

I hate going to do my weekly shop, it fills me with dread. I know I could do online and blah blah but the fact is I need to physically see stuff as Im rubbish at making has only just hit me properly why I hate it sooo much. I mean, I hate it like everyone hates it, for the trolley with the wobbly wheel, for the old lady you get stuck behind, for the way they swop everything round when you only just felt comfortable with where everything was. But for me there is another reason, probably one I didn't want to admit's the kids. So, so many children with their Mummy's, sitting in the trolley seat or walking beside the trolley..and this is hard for lots of reasons. I can never take Elin to the supermarket. Too big for the baby seats and cannot sit up so toddler 'flap' seats are useless. Cannot push wheelchair and trolley at same time. Even if Paul came in order to do that latter, she would simply not tolerate sitting in one position in her chair for that long. So I have to go without her and I know most Mum's out there probably wish to god they could leave the kids at home for the weekly shop but I wonder how long it would be before that novelty would wear off? Before they missed the tug on their sleeve, the chatter, the begging for sweets, the help, even? So obviously I find it hard to see other kids with their Mummy's in such a mundane situation that they simply take for granted knowing it's yet another thing Elin and I cannot do together. But it's more than that even, it's simply seeing so many Parents with their children at the same time, hearing snippets of cute conversation, observing parent/child relationships. Obviously I see loads of children in my job a as Nursery teacher but the parents aren't with them. I see Parents with their children in other situations obviously, walks to the park, going to town etc but never so many all at once- literally round every corner and in every aisle. They all always seem to be Elin's age too as if highlighting the torment by also clobbering me with the chasm of difference in their abilities when compared with Elin's. I have been known to practically jog around the supermarket wishing I could wear blinkers like a horse to avoid being frightened by my surroundings! Actually I think I should re-consider the online would probably save me a fortune in kids clothes as a bonus if nothing else... :-)
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