Update

So paediatrician thinks that the spots on B's legs are unusual and doesn't know what they are so sending to the dermatologist. Been there for 5 weeks. Just turned up one day and haven't gone since! Note the purply legs too.

and she believes that the protein in her urine is nothing to worry about and is orthostatic proteinuria which basically means you get protein in your wee when you stand up and sit down?!

But is going to do a 24 hour urine collection to check..

Tuesday B tried out the hippocampe all-terrain wheelchair..This nifty chair can go on sand, off road and will make it alot easier for us to go out and about. Don't get me wrong it still requires some strength but it will be easier than our current resources. It even has a little ski that goes on the front for snow! Fingers crossed we can get the £3000 funding required for it. Will open us some new doors for us.

The beast and the beauty

The beast - B's condition, her never ending list of symptoms and mysteries.

B's weekly urinary dipsticks show protein. Have done most weeks since her Christmas hospital admission. Week before half term, it didn't. Yeah! Then yesterday it did. I think its about time I pushed for someone to look at that. What with that and her strange leg rash, it feels a bit like something is brewing and I am scared. My intuition has not let me down before and that's why I feel a bit scared. and just tired of the worry and second guessing.

Hey ho....on the bright side - the beauty: my wonderful gorgeous daughter with her new (and expensive) beautiful hair colour/cut.

Douze, mon cher, douze

Beaucoup d'années, beaucoup de souvenirs.

Je t'aime de tout mon coeur

x

Special Needs Cat?

Monty in B's Convaid Cruiser....

He is "cruising" for a bruising

Parents day

Every half term, B's school has parent/therapist/teacher day where you get 15 minutes with any of the forementioned you wish. It is also a great opportunity to catch up, get progress reports and see how B is doing generally.

Today the main feedback was "she is lovely your daughter". "really starting to come out of herself" "lovely sense of humour, still a bit shy in group situations but getting better" "a pleasure to teach" " a lovely girl" " she will do well in her ICT entry level" etc etc....

and best of all: " a real credit to you"

When we found out about her condition and what was to come, I lost alot of my dreams and hopes for her. But 6 years later she is still able to show me that dreams and hopes can come in different forms and I have every reason to be proud of who she has become and is becoming.

well done B

Inclusion at its finest

Found this picture in the goodbye book made by B's old mainstream school class before she left to go to Treloar, her special school..every page had a special message from each of her classmates and the last page had an A4 size pic of this...This is her last sports day there when she was 10...the year she became a full-time wheelchair user. Look at how well they included her. They were fantastic.

It was the end of an era and the start of something that would make her into the beautiful, calm, brave and funny young lady she is today.

I cried when I saw this - for what was but I am actually my feelings are more like pride right now.

and my daughter is one of them

World Rare Diseases Day - February 28th 2009
http://www.rarediseaseday.org/

New meaning of hoody

I just love this picture, taken yesterday. To me she is always beautiful.

My other child

People think that because B is at school in the week that I am child free. But then some of them haven't met my maine coon cat Monty and those that know me well know I am a bit besotted with him.

Monty does not like to get wet and therefore absolutely hated the snow yesterday.

So mid afternoon he decides that he needs to go and go badly and believes this to be an effective litter tray:

ok so as we are missing an actual litter tray, I decided to succumb to his needs by becoming blue peter and making him one:

It obviously wasn't right........at bedtime he starts to go mad making his almost yelping noise consistently indicating something is wrong and in this case i figured he needs to go and go BADLY!.

So in my nighty, and wellies at 10.30pm , I went out into the garden and did this for him:

all the way to some earth..coaxed him out the back door....he gingerly made his way to the patch, sniffed it then promptly walked back in the house again.

I went back to bed.

5 minutes later more yelping, running around and cat calls of I'M DESPERATE

So after my BF refuses to help, I get a moment of inspiration and get my wellies on and my coat again and find some soil in a bag under tons of snow and fill an old tray with it....TADA!

I go back to bed hoping he will use it now...to be followed 30 seconds later by him.....

I guess he had just lost the urge........PAH!

never mind, today it still looks like this.......so today he may be comforted by my efforts

Whitewash

Today I woke up to this:

Good timing, was supposed to be having an exam this morning at Uni 17 miles away. Roads are a standstill as well as public transport so its been cancelled. Oh dear.....

and then my snowy white cat went out and we found her like this - in her snow cave aka a snow covered stool.

Hope B is having fun at her school too!

Off for a pub lunch soon...snow = SUCH a pain :)