and she laughed in her sleep

What a christmas. B has been in hospital since midday christmas day. She has been unwell since last saturday and not eating/drinking, vomiting, fever etc etc. I was scared to put her to bed christmas eve. Doctor admitted her christmas day morning and we have been there since. She has a bad infection and her body can't cope with it. She is now on IV fluids to get her hydrated and antibiotics to fight the infection.

right now she is sleeping. She feel asleep and then I heard a giggle in her sleep. That just made my tears dry up and my hope return.

I love you B. Please get well soon.

As it draws nearer, my thoughts are with my friends

Those whose children passed away in years past and those who have passed away in weeks past. I know that the first and every christmas is hard and you are in my thoughts; you, your families and your little ones for whom I will say my own way of praying for.

Wishing you a christmas that will be joyful in its own way and a lot of love for you and the ones you will miss.

xxxxxx

What causes the blips?

She had seven weeks without an observed prolonged seizure so we were hopeful the medication was working. Until monday night when she had a 5 minute unresponsive one followed by a morning of uckiness.

Hormones? tiredness? shape of things to come?

Wish someone would tell us

All's well that ends well

A day I was worried about but went swimmingly. The southern SK Xmas party. We had Santa visiting (bless him, he was a little poorly too) and everyone brought food and I managed to scrape some stuff together to give the parents a free raffle so everyone (except one kindly person!) got a gift. Fun, activities and catching up with old friends. B even came along for a bit. Didn't want to visit Santa though... Afterwards drove home, quick cuppa before driving all the way back to school (which is literally 10 minutes from where we were) to drop off a weepy B and therefore a weepy me. I am so tired its an understatement but I chose the career change which involves long days and night shifts so its my own fault! lol.

Today, B starts her new eating and drinking regime. Thickened drinks and hawk eyes on food. No thin liquids especially in food with mixed consistencies. I had trouble with the thought of this earlier last week. End of another era, beginning of the next. But if it keeps her safe we have to do it and I know its just par for the course. My adaptable daughter will cope...as long as her daily diet coke can be thickened ok..that's all she is really worried about..lol!

Another day..another challenge...bring it on...

Christmas Past-Times

A friend shared a clip of her 6 year old sons nativity play with me today and it got me thinking about a video I had taken of B when she was 5 at her first. She was mildly ataxic and it was the calm before the storm. I love these two clips and I remember them like yesterday. She was a sheep and I remember having real trouble finding her a "coat". She walks in not able to see where she is going! and sings her little heart out. I love it.

and added value - her fifth birthday two days before.

Pics from the weekend

Saturday, B's birthday started with her opening some presents. Absolute joy at getting a Troy from HSM birthday card (thank you Whsmith!) and her requested purple phone. Followed on with lunch with nan and her godparents and then a lovely walk in our nearby common woods. Afternoon completed by getting a tree and decorating it. The evening consisted of dinner at the Harvester where B loves Nachos and we were joined by M's parents.

A really lovely day.

and then she was 14

she nearly came today, 14 years ago. She came at 23.25 on the 6th. We were all determined (especially me) to get her out before midnight. A mop of black hair, a little wee thing of 6lb 2. I remember being so overwhelmed by her and then scared stiff when 2 hours later this little thing started hollering like anything and I had no clue what to do. Our first two years together were tough. I was on my own, although living with my wonderful mum who gave so much to us. There were times I thought I couldn't do it but I did. She was a beautiful baby and a beautiful toddler.

It felt like no sooner had she learnt to walk that her toddling soon became wobbly, The little girl with so much determination started to find things hard. Playgrounds became a huge fear for her, she hated to be off the floor as she must have felt like it was all moving. Walking down the street she would stumble and hurt herself so much. But in true B fashion she picked herself up and got on. No-one really felt much was wrong. But I did. I knew. When she was just 5, she became quickly very ataxic. Brain tumours were mentioned, MRI showed otherwise - other things happening - a potentially shrinking part of her brain. I was devastated but hopeful that it was not going to continue. They tested her for lots of infantile and childhood onset life threatening disorders. For 3 more years. When she was eight we got her diagnosis, unexpectedly. She had a label at last. A horrid, extremely rare label. My beautiful B would end up permenantly in a wheelchair, she would lose feeling and use of her limbs, and there was no clue on her life expectancy. and 6 years on, as things progress, she fights all the new battles that her condition brings her with fierceness and spirit. I fight all the other battles for things that her condition dictates she needs and between us we try to love and laugh as much as we can. We are a team and we are best friends. Last week we found out some bad news about her swallowing and today I live in more fear but yesterday she was 14. I am so thankful for that. I am so lucky to have her for 14 years. She has brought so much joy to my life. I would be lost without her.

Happy Birthday my wobbly pumpkin.

Happy Birthday my B

14 today! Unbelievable. Tomorrow I will write more. For now, this picture just sums up you. Your laughter and your smile. I love you...

Spot the difference

The birthday cake that B wanted for her birthday on saturday and one of our cats Mimi. I may feel a bit strange eating the cake. I have to be honest......

Apologies

If you are one of my readers with whom I should be getting in touch with. Life is manic at the moment. Placement means leaving the house at 6.30 and getting home at 9.15pm 3 or 4 days a week and then trying to sleep, do B and SK stuff and be with B and M the rest of the time. When I get home in the evening I am not good for anything but a ready made meal and an hour in front of the TV.

So this will last 10 days more then I have a break until early January. So if you don't hear from me regularly or or at all before then, I am thinking of you, it is just not possible to fit it all in.
much love
Rx