Living with Cerebral Palsy 🍋🍋

Thursday, 25 March 2010

Orthapeadic + X-Ray

Hi Elin fans just a quick update ...yesterday I took her for her 6 monthly x ray of her pelvis. She needs these to ensure that her hips have not popped out of their sockets, which is a common problem in children with little or no mobility. If they do pop out, it may require an operation to fix them. Apparently, no amount of physio can prevent this from occurring, it just happens. Luckily for us they are exactly where they should be (phew...big sigh of relief). Also, I saw the consultant for him to assess her back- we have to ensure she is not developing curvature of the spine, again owing to her lack of mobility. Lucky again, everything seems fine. He doesn't want to see us for 12 months! Hurray! Good job it was good news as I was inexplicably on the brink of tears today . HATE going to the hospital - so many painful memories- which is ironic given the amount of time I have to go there. Luckily most of Elin's appointments are in the child health centre which is fine, it's the main hospital I just can't stomach- the smell's and the long corridors, just takes me back to the weeks we spent there after she was born. Also, x -ray is right next to ultrasound and I saw at least three happy couples bent over scan pictures as they were leaving- prompts very bittersweet memories for me cos I remember it so well. Elin was safe then. She was perfect in fact- the sonographer said so. I find it so difficult to deal with. Also not helping was manouvering a large buggy with a mind of it's own piled high with mine and Elin's coats, two bags and Elin's sepcial boots between the orthapaedic and X ray departments, whilst simultaneously propping Elin over my shoulder ( as usual, Elin had decided that actually riding IN the buggy was not an option she was willing to take) and trying not to drop her. The hospital was boiling hot and we had to wait 40 minutes for the appointment, during which time Elin decided to play to an audience in the cramped waiting room and do her best choking impression followed by at least 20 minutes of squeking- ensuring many sympathetic gazes from the other Mum's (but also inquisitive eyebrow raises and 'Awwwww' faces to each other when they thought I wasn't looking) so by the time we left, despite the good news, I was feeling a little frazzled. Thank heaven for the fab blue badge, which meant that I could park practically right outside the hospital door, worth it's weight in gold. We were home before we knew it (second big sigh of relief of the morning) had an hour's break before our next appointment- thankfully a home visit with the speech therapist (feeding expert)..but that, ladies and gentlemen, is another story.....

Wednesday, 17 March 2010

Another hospital visit...

A terrible night last night. I cannot describe to all you lucky people out there who have healthy children what it is like to wake up in the night and discover your baby having seizures in their cot. Last night Elin had a raging temperature. She was burning. It was gone midnight and I had awoken thinking it was just her usual middle-of-the-night wake up. But she practically sizzled when I touched her and though we administered the trusty old calpol immediately, stripped her of her pyjama bottoms and socks/blankets etc and mopped her poor, fevered brow, her temp was still reading 39 after an hour. Added to that was the constant spasming, twitching and seizing which invariably accompanies such a high temperature with Elin's condition. To watch her wide eyed, confused expression while her body writhed and twitched was an absolute horror. I will just never, ever get used to it. Fortunately after a few hours and some Nurofen, she was able to relax enough to sleep. I, of course lay there in the consuming darkness waiting for something bad to happen. It didn't. My alarm clock set of a seizure in her sleep, so I knew we were still in a bad position this morning. Luckily the ward were as welcoming as ever and had her diagnosed with an ear infection and back home again with antibiotics in good time (and we got to see our friends the Nurses who are wonderful and treat Elin like a celebrity) She slept practically all morning and all the way home. I put her in her cot without removing her coat or shoes, thinking she needed and frankly, deserved, a rest. She seemed a little brighter this afternoon, which was lucky as we had yet another appointment- thankfully a home visit- but still very grumpy and twitchy. I seriously cannot believe this sometimes, that this is my life, that it is her life. I tried to pray for her again tonight but I couldn't-again. Because I prayed every single night that I was pregnant that my baby would be healthy. I haven't prayed since the day she was born. I can't. I don't think there's anyone there.

Sunday, 7 March 2010

Latest visit to the neuro...

Hi all Elin fans out there this will be a quick update and probably rather boring but on Friday we went to Alder Hey (again-over 20 trips now at 100 miles each time- wonder if the nhs will cough up for the petrol??) and met with Elin's neurologist. I had called them on monday and they fitted us in strait away which was really good of them, as I had a letter saying our next appointment was September!! Errrrr...I don't think so!! Anyway it was a fairly worthwhile visit- apart from a ridiculous Nurse who weighed Elin and should have had a sign on the door saying 'Sense of humour not welcome here' but that's another story- he was pleased with her progress...yay...he actually used the word thrilled but he never even see's her at her best- she won't perform to him lol she is a monkey, it's so frustrating but nonetheless he was pleased so that was good news. We then raised the issue of her constantly 'rotating' or as I call it, 'twisting' unless she is on your knee...which makes travel almost impossible as journeys of any kind become unbearable as she thrashes around against the restraint of the cars seat or pram and basically just screams and sweats. He decided to up her dose of baclofen- a medicine she is already on designed to combat these rotations and apparently very effective when you find the correct dosage. I have to call him in 14 days if she is still no better and he may change the medication altogether then. Fingers crossed it works, changing medications makes me very nervous. So that's where we are. Her first wheelchair (which is actually much more like a super-posh buggy called the Jazz Easy) is on order too, lets hope when it arrives she can sit in it without getting stressed! As the weather improves I would love to take her for a stroll up and down the lane and-shock horror-maybe even further afield...but I won't count my chickens just yet- I have learned not to! As usual I will merely keep my fingers crossed and hope for the best.....
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