Living with Cerebral Palsy 🍋🍋

Saturday, 27 February 2010

24 little hours

Feel like deleting my last post reading it back it seems so negative! But no point in censoring a blog really is there- it's supposed to be a true reflection of life after all! Great day today, Elin really well- helps when we don't have to leave the house I think she is a home-bird! And no need for any car/buggy related stress. Just me and her most of the day as Paul at his Dad's. Lots of fun and snuggles. Elin not in any pain or uncomfortable- If only all days were like this!!! Feeling very blessed today. Gorgeous day, gorgeous girl. ;-)

Wednesday, 24 February 2010

Today I am mostly thinking...

...That it never gets easier really, you just get more used to it never getting easier. We watched Eastenders last night and desperately tried not to get upset when the baby was born not breathing, but both failed miserably!!. It was the Mum's cries that got me and took me back to a place I never want to think of again. Stupid really, it's only a soap, they're only fictitious characters. I wish I could erase Elin's birth from my memory though, the horror of it- like in 'Eternal sunshine of the spotless mind' I wish I could choose to have that whole memory wiped because sometimes the pain of it is too much to bear. Happy ending for the Eastenders characters of course, no soap would ever dare run a storyline depicting what happened to Elin. People simply don't want to know about it. How many stillbirths/poorly babies/children are there in soaps? Exactly. Bad things happening to children /babies just doesn't make good viewing does it. Emmerdale was brave once in running the 'cot death' storyline and it was brilliantly done. But they ruined it by magically solving the mum's problem when she discovered the baby had been swopped at birth and her baby was still alive and living in the same village (ha!). Pisses me off. Its about time they started thinking outside the box and reflecting a wider society. Imagine how much better people would understand disabilities like Elin's if it was shown in a soap like Eastenders which can get 16 million viewers!! But I digress. I suppose this tirade is really owing to the fact that I heard more news today about another birth in my family group, lovely news once again but very hard to swallow. How come everyone else in the world can give birth to a healthy baby, enjoying the feeling, the excitement, the wonder, the pride???? I can only imagine what it's like to hold your newborn in your arms, feel the relief that things are ok and see the limitless future stretch before you. Why did this have to happen to us??? Nope. It doesn't matter how much of a 'good' day I'm having. It never gets any easier.

Friday, 12 February 2010

Better and worse....

Just a quick update for all you lovely people who follow the story of my beautiful girl :-)
After another hospital visit last sunday due to her erratic breathing and high temp, she has had a fantastic week breathing wise! I think her nose is FINALLY healing after the operation and the antibiotics the hospital prescribed cleared up the little infection that must've been lingering somewhere and making her feel rotten :-( For the first time in months she is breathing clearly! Cant tell you how happy this has made us. She is also sleeping more normally and back to only waking twice a night (yay!)
However her seizures are not so good, in fact she is having loads of little ones but touch wood no big ones to speak of . The little ones are hard to watch though, her chin wobbles unnaturally or she'll fling out her arm for no reason or her head will shake. I can cope with them when its a few times a day but lately its been every couple of minutes or so :-( Tonight we found a possible cause- a new molar poking through her gum on the left side- new teeth always upset her and this one is a monster. Because she can't eat anything or lift her hand to her mouth, her teeth cut really slowly- god it must hurt her. Anyway Im hoping once the tooth of doom has broken through that her seizures will calm down, then we will be back on an even keel- it feels like we sort one thing out and another problem arises- I feel like shouting 'Give her a break!!' but I wouldn't know who I was shouting at. Tonight I read of a girl like Elin who is 10 years old. She can say 7 words. This sounds like a miracle to me. I would settle for one word. It would be 'Mum'.

Wednesday, 3 February 2010


Well the two weeks since Elin's operation have been pretty hard! Her breathing did not improve and so for the last two weeks we have been watching her really struggle to get any air in through her little nose :-( She has not seemed to have worked out that she can breathe through her mouth, so a blocked nose is pretty bad news for her. Nights have been the worst, with her being up for hours at a time (usually starting around 2am) because she is simply snorting instead of breathing and cannot get any rest. Suffice to say we have been exhausted. She would then go to sleep early morning and sometimes sleep through until nearly noon. The first morning I was back in work after her op the childminder text to say Elin was still asleep and it was so unusual I was convinced she had somehow slipped into some sort of delayed post-operative coma!! Luckily Heather was on hand with some saucepans and spoons to rouse her! Stressful. Anyway the day before yesterday, after 11 days of listening to her snuffle and snort and being up with Elin practically all night, I took her to the hospital to get her checked out. convinced something dreadful must have happened for her still to be in such a mess all this time after her operation. They were really thorough on children's ward and even got an ENT doctor to come and listen to her. He agreed she was noisy, but said it was to be expected really after such an op, cos of the nasal swelling etc. He advised to keep her nose moist and carry on with the nurofen to reduce swelling. *touch wood* today is the first day we have seen improvement. Please god let this be the end of the breathing issue- she has so much to deal with already :-(
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