Living with Cerebral Palsy 🍋🍋

Monday, 28 June 2010

Things are lookin up..

Since my last post we went to Alder Hey and saw the Neuro. Not anywhere near as scary as I had thought. He was reasonably relaxed about the increase in fits of late and seemed to think it was still related to the infection Elin had at half term. He doesn't want to change her medicine as that could cause further problems. He said if they continue to increase he would get us back to have a re-think. Went home feeling more confidant and slightly more chilled. Until Sunday. Being Father's Day and having a meal out planned, Elin decided it would be a good time to shatter my new found chilled attitude and have yet another fit. Despite what the Neuro had said, the negative worries and stresses crept back in and I found it hard to focus all day. As the Neuro had advised we wait another 3/4 weeks before calling him, to see how the pattern of fits developed, there was nothing to do but get up on Monday and just pray we had a better week. The good news is, we did! What a difference in Elin this week, I kept waiting for another fit, but it never came. An amazing weekend with a friend of mine who was visiting, Elin was just on top form and my friend got to see her at her very, very, best. Just had to be careful to keep her out of the heat poor thing, it really disagrees with her. Not so relaxed and happy today, but then I think she had used up all her smiles at the weekend! Just hoping, as always (my life is made up of hoping and wishing) that the good spell continues .............

Thursday, 17 June 2010

Quick update...

Hi Elin fans. The antibiotics DID work and worked well, within two days we had our girl back. We only had to breathe on her and she was laughing. Great stuff. A whole week of bliss.Then Saturday, which historically is not a good day for Elin. Paul uttered the immortal line 'we should do something together and leave Elin with your Mum' which can only really mean one thing: Yup, Elin decided to have a fit exactly half an hour after we dropped her off and just as we were in a particularly lovely Mexican restaurant settling down for lunch. Luckily I had taught Mum how to administer rescue meds and give Mum her due she didn't interrupt our rare break together, I actually phoned her to 'check' on Elin but in reality I think I knew a fit was brewing. As is the custom, Elin went strait to sleep and Mum encouraged us to stay out and about for a bit. Cue Paul and I wandering aimlessly around shops trying to enjoy ourselves when really we just wanted to be back home. Ho-hum. Back to normal on Sunday and again a very good week for our little monster, then came today. When I got her home after work I knew something wasn't right as I couldn't get her to smile and she wasn't with us. I guessed a fit was coming and it did at about four this afternoon :-( :-( :-( I can no longer put these down to her being poorly, or hot, or out of routine. She is having too many. Luckily we are booked for a visit to the Neurologist at Alder Hey tomorrow.....I am looking forward to what will probably involve a change of medicine, as it might help, but as always am irrationally terrified that he will hear what we have to say and somehow wash his hands of her, tell us there is nothing to be done. Of course this is unlikely ever to happen given the fact that there is still a list of meds he hasn't tried, let alone the ketogenic diet. But knowing the fear is irrational does not always make it any less horrifying a thought.

Friday, 4 June 2010

The rise of the machine!!

The good news is I am back, ready to fight another battle. I am beginning to feel so much more normal and like me and much less 'wallowy' and feeling sorry for myself. The bad news is, the next battle arrived immediately, so it's a good job I was in full Sarah Connor mode...
Elin has cried all week. Can't decide if it's a good or bad thing that Paul and I were both on holiday from work this week! Anyway, it's most unusual as despite her complex issues she is a placid, happy little thing (obviously qualities inherited from her mother). We were convinced it was her teeth, as she has some especially razor-like ones beginning to poke through near the back and little bleeding bits on her juicy gums. She has been gagging constantly, had a poorly bottom and diarreah and the snuffles which all kind of points to teething too. Last night and this morning she perked up. We took a risk. We went to the seaside for the day. Bad idea! We got stuck in bumper to bumper traffic on the way. When we arrived, we managed to get as far as the busiest part of the lengthy promenade and Elin decided to have a fit. A nasty-rescue med-requiring-fit. So, in full view of all she was laid unceremoniously on her changing mat and I administered the wonderful candy-floss smelling medazolam. The fit stopped, Elin went to sleep and we continued onto the pier, albeit a little fraught and sweaty. This is where I noticed just how many people were staring at Elin. Not just looking, realising that yes, she was a special little girl in a special chair, and looking away. Properly staring at her. This pissed me off. I don't mind you having a look but you don't have to physically track us with your rubber neck until you can look no more. Anyway, down the pier we went. Had a dink, came back and Elin began to stir. It soon became apparent that she was still stressed. We had had to park miles out cos of the amount of cars so we began to walk back. I relented and took her out of her chair at which pint she began to fit again. We hugged her hard, sat down, got up but she wasn't having any of it. We raced back to the car, laid her in the empty boot and I gave her a second dose of the medazolam (unheard of, she usually has one dose a moth roughly) with the epilepsy nurse's warning ringing in my ear 'don't give her a second dose, take her strait to hospital' well, we were an hour at least from the nearest hospital so it wasn't an option and Elin's consultant had said he was happy if we needed to ever giver her a second dose. I then sat illegally with her on my knee, pretending to scratch my nose every time we passed a police car. Mercifully the fit subsided in the alloted ten mintes (ten minutes before complete and utter panic, presumably) and we went strait to our local hospital which in a tiny twisted way was nice cos we got to see some of the Nurses who are champions of the Elin fan club. We were there a few hours as the ward was very busy, but the blue angels brought me tea and sympathy so we can't complain. She was diagnosed with an ear infection which more than likely set off the fits and despite the doc wanting us to stay to keep an eye on her we brought her home (I am an old pro at this now) with antibiotics. If she has another fit in 24 hours we have to go back. God, I hope they work.
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