Living with Cerebral Palsy 🍋🍋

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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