Living with Cerebral Palsy 🍋🍋

Tuesday, 27 April 2010

The first time..ever I saw your face....

The news from Opthalmology is good. We went to Alder Hey yesterday and the consultant is very pleased with her vision developments, however small. She can now follow a light for a period of time and look toward a light. She also responds to lights being turned on and off in the room and to me putting my hand in front of her eyes then taking it away again (she LOVES it, it makes her laugh her head off). He admitted that when he first met us last June he thought Elin was completely cortically blind (where the brain damage is so severe that it cannot recognise what the eye is seeing and therefore the child is, for all intents and purposes, blind). He was surprised to discover, after electronic testing, that Elin's brain was indeed responding to some of the eye tests they carry out, and that some images were being transmitted through the pathways in her brain to the cortex (which is the receiver at the back of the brain). He was sooo pleased with her it was infectious ;-) He gave us some more 'eye training' tips, which was handy. He also said Elin's eyesight will continue to develop, however slowly, until she is about eight years old. This means then, that there is a chance for her. Though presently she can only see shapes, light/shadow, colours and the outlines of things, there is a chance that one day she will be able to see a little more. Then came the cherry on the day, Elin may be able to see my face. He has seen it happen in children like Elin before. They become able to visibly recognise their parents, where they respond entirely differently to a face they don't know e.g a Nurse. I hope he is right, I hope one day Elin can see my face because there is no face in the world that loves her more and I think she deserves to see it with her own eyes. What a miracle my daughter is ;-)

Sunday, 25 April 2010

Another day another.......seizure ;-(

Baaaaad day today. Feeling very upset as Elin had another fit today- exactly a week since the last one, which is weird since prior to that we had gone 3 months without one. I suppose there is no rhyme or reason to it. Unfortunately this time, we were out in Llangollen. Ended up administering Medazolam in the middle of a pub lunch.great. Kept very calm as Caitlin was with us and I never want her to feel frightened by Elin's condition, I could see her turning away so she wouldn't have to see her sister fitting. It broke my heart to see, she's only 12 it's such a lot to deal with. Found it very hard to relax after that, we had to basically just come home. As soon as we dropped Caitlin off I burst into tears- had been holding it in. Feel like screaming we can't even go out for the afternoon with the girls. It's so hard. Elin still not right, but better now. Hopefully fine after a nice long sleep. The cherry on top of the cake is that this coming week Elin has four hospital appointments- one in Alder Hey on monday, Wrexham Maelor on tuesday and then TWO appointments in the same department on wednesday, one at 11:00 and one at 3:30. Arghhhhhh!!!!! That's seven appointments in a fortnight!!! That's about six appointments too many for my liking ;-(

Tuesday, 20 April 2010

Don't do it!!!

Have come on here to distract myself from messaging a pregnant barely-know-you-facebook 'friend' who has just announced they want a home birth. DON'T DO IT!!!! It makes me feel like vomiting with fear. I went through a whole labour being told that Elin was fine, her heartbeat was fine. Five minutes before she was born everything was 'fine' according to two midwives in a room full of equipment. But everything was not fine, Elin was unexpectedly stillborn and only here today because she was able to be instantly resuscitated by on-hand doctors and immediately ventilated on life support. Yes, I know it's rare. 1 in 1,000 births end that way. But what if that 1 is you, like me?? All the midwives kept saying after they had taken Elin away to save her life were 'thank god you didn't have a home birth' There is simply no way she would have survived. I can see the appeal of home births and people may not be aware of the dangers- I certainly wasn't before it happened to me. But seriously, how could you live with that decision if something did go wrong and you couldn't get to the hospital in time??? I just don't understand why anyone would put their baby at risk that way. DON'T DO IT !!!!!!!!!!! Not for the sake of having to spend a night or two in hospital!!! I would never say this to anyone wanting a home birth, it's not my place. But I can say what I want on my own blog so there, I've ranted (again) and I feel better for it. ;-)

Monday, 12 April 2010

A letter to Cerebral Palsy

Dear Cerebral Palsy
I just want to take my daughter out in her pram!!!
I don't want to get halfway through a walk in the sunshine and then have to balance her over my shoulder whilst pushing the pram back home because she has discovered a way to work herself into a seizure as soon as her bum hits the pram seat!! This MUST be a behavioural issue surely?? But how is it possible for her to make herself have a seizure, which stops when she is picked up??? How is it possible that she is nearly two and I still can't so much as take her to the flippin shop or go for a pleasant stroll???
ARGHHHHHHHHHHHHHHHHHHHH I HATE you Cerebral Palsy. Screw you Cerebral Palsy with all your intricate, difficult, hateful nuances that no other parent could even begin to imagine! Sod off and leave us in peace you evil idiot!!
Yours sincerely a very frustrated Mummy.
P.S Ah, that's better ;-)
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