When it hits it hits you hard...

Burst into tears in Colour Supplies today. Had no idea it was coming, took me totally by surprise and was suitably embarrassed and thanked god nobody was around to see, though I suspect the man on the paint counter was slightly terrified there was a crazy crying lady in the store. Not done that for ..ooohhh....ages. It was a little pink bike, lined up next to all the other big bikes. It was glittery and it had those ribbon tassles dangling from the handles. It was the kind of bike Elin would most definitely be learning to ride on and for the split second I clapped eyes on the bike the image popped into my head of her on it, bunches flying in the wind. Hence the spontaneous tears. Christ this is tough sometimes.

Elin has started school!

What a terribly long break from my blog! I wish I had the time to update more regularly, but sadly just lately it would appear that Elin has given up sleep for Lent, and thus evenings are spent staring mindlessly at the television or sleeping! Well, what has been happening in the world of Elin since I last blogged? Mainly ..she has started school!!! And we are so proud our hearts could burst. Not being of 'proper' school age yet she currently goes just two mornings a week. For the first 2/3 weeks I was lucky enough to accompany her to school, to help her settle. Of course it's more likely that I merely cramped Elin's style in front of her new friends and it was in fact me who needed to settle! Anyway, settle she did. What a thoroughly awesome place her SEN school is. Fantastic resources and a staff who talk of the children as though they are family. It blew my mind that we have access to a place that can cater so brilliantly for Elin's very specialist needs. Never mind how cute she looks in her school uniform of course! I had no reservations about her going to school, but I must admit the first time she went by a taxi minibus on her own (not totally of course, she has great carers on the bus but I mean without me) I did burst into tears at work!! It suddenly struck me, as these things occasionally do, that she might not know where she was, having nothing familiar to her surrounding her, and the thought of this broke my heart. Of course I needn't have worried. Elins home school diary read that she had smiled all morning and 'could not have had a better first day at school'. My pride was as fierce as it was overwhelming. A huge milestone which once upon a time, in the dark dark days at the special care baby unit , we weren't sure she would reach. Elin has had many adventures at school already and we are lucky enough to receive photos home of her enjoying many activities which I put in a scrapbook. I am sure my blog posts will include lots of school news in the future now. Where would parents like me be without places like this school? Places we can have absolute trust in to not only care for her but also to educate her (in her own special way) and help her develop to the best of her ability? There is a lot wrong with this country's governments priorities but as far as provision like this for Elin goes it makes me think Britain truly can be a Great occasionally :-)

That was quite an absence!

Hi all! Wow I knew I hadn't updated in a while but had no idea it was so long! This is mainly because I guess I haven't felt the need to, that is, I am always drawn to my blog to vent my fears and frustrations to do with Elin. Thankfully, things have been going amazingly well lately and of course I am wary of saying that, but it's true! Elin has been a superstar. We feel since she turned two in July that things have really settled down for her. She travels better and her seizures are more infrequent. She is such a happy little soul and has been so calm for such a long time now. We even managed to get to London this weekend with her..unthinkable twelve months ago! I have read that children with severe brain damage can take over two years to even start making sense of the world in any way. This is what we feel is happening with Elin. She is beginning to understand her special and unique world. We have started the statementing process for school and I am so looking forward to Elin going, where the teachers are experts in her condition and she will be able to grow and develop even more as well as being around other children. We are also well underway with the process of adapting the house for her. She will need wheelchair access, ceiling hoists, a lower floor bedroom, a special hydraulic bath to name but a few things. It means we will need an extension of course. It's a lot to get your head around, it fairly easy to carry around a two year old...but what happens in ten years time when she is a teenager and still unable to move? I don't like thinking about that too much, but clearly we need everything in place well before she gets too heavy to lift. We are lucky we live in a day and age where these things are available to us. Fifty years ago Elin would probably have had to live in a hospice ( she definitely would not have her Mickey button for feeding! ) so we have to thank God for that, that she was born now and not in a time when we could not have looked after her. That would have broken any parent's heart. I got reminded today of a saying I love and I think it sums up mine and Paul's feelings towards Elin's condition brilliantly: When life gives you lemons, make lemonade :-). Elin is definitely my lemonade.

Go away seizure monster!

Increased seizure activity in my little snopple chops this past week :-( Culminated in two fits requiring buccal, one on Wednesday afternoon and one on Thursday morning. Don't think she recovered properly from the seizure on Wednesday afternoon to be honest, which may be why Thursday's fit happened. A perkier girl Friday, then back to being floppy and uninterested in anything on Saturday. This prompted a little visit to the local Children's Ward, to which we have open access (meaning I don't have to go through A and E , I just call up, say we're coming and we turn up. It's an absolute godsend). Luckily the ward was quiet and the lovely Nurse and Doc saw us strait away. I just wanted to get her checked. It's not as though I am a fussy Mum, when you consider her problems. I usually know when something is wrong and we not been to the ward since May, so I felt ok about taking her in and asking them to check her over. They found nothing untoward. I concluded with the agreement of doc that the most likely explanation is teething, which dogs poor Elin to death as she cannot chew anything or put anything in her mouth to relieve it. Lots of tears and crying at bedtime, which hardly ever happens. The sound of Elin crying rips my heart out. So its a good job we had a stockpile of calpol and nurofen!! I felt so bad for her and so frustrated that she cant tell us or show us what's wrong. Lo and behold this morning, in a regular inspection of her gums with my fingers ( a dangerous business) I discovered a tiny bit of a back tooth poking through which hadn't been there before. I knew it!!! Lets hope that explains the increase in seizures, as it so often does, and lets hope the rest of the pesky teeth cut soon! I hope the seizure monster leaves us alone for a bit and goes to visit someone else now!!

Amazing Article.....says it all please read...

www.independent.co.uk/life-style/health-and-families/features/profoundly-disabled-we-wouldnt-have-her-any-other-way-2072088.html

I'll be your dentiiiist!

First trip to the dentist today! I think Elin must have been excited because she sat brilliantly in her chair all the way there are for a good while in the waiting room before I got her out for a cuddle. She was doing her laugh which is extra loud and can sometimes sound like she is in some kind of pain....I noticed some people doing the 'look everywhere except at the noisy child in the wheelchair' eyes, but I didn't care at all, except I wish they had a good look cos they would have seen that she was laughing and how cute she looked. Anyway, enter dentist call in Elin's name...woah! Hang on a second! He appears to be some sort of cross between George lamb and George clooney! Well ok maybe not quite but he certainly had an air about him and I don't get out much, ha! Elin must have agreed because she flirted her way through the appointment. She noticeably looked around at the halogen lighting and the bright shiny white walls. Super-dentist was amazing. He spoke to her and even stroked her nose -her favourite thing!- without me telling him to. She did one of her best ever flashy massive smiles and opened wide like the best of them and he had a good look. He said her little gnashes were fine and as I worry about aspiration I should brush them without toothpaste, twice a day. Even though she doesn't eat anything orally, her teeth will still collect bacteria and produce plaque, so you have to 'disturb it'. Good job she had a fab new flashy toothbrush for her birthday! I was so proud of her today. Next time I am going to ask if she can have a sticker :-) :-)