It's not easy to write this

but I'm scared.
Our camping trip brought new and scary stuff B's way and I am really not sure how to feel. It feels a bit surreal to be honest.

She had seizures. Not the stary absent ones we previously suspected but a type of partial seizure where you are semi conscious so aware and your body is doing stuff you can't control. First one happened after she had fun on the bouncy castle on the Saturday - right side weak, unable to open her eye, the other eye rolling around, twitches and mouth going in a chewing motion. Witnessed by others who know all about seizures.

Second was on Monday night. During the day she got hysterical at Ikea during some building works - she doesn't usually get that noise sensitive. Then in the evening, she had a seizure after jokingly trying to knock something out of my hand. Face contorted, arm spasmed. She came round and was hysterical, saying she was really scared. So were we.

Three more happened over the next few days - head off to one side, mouth open, staring, arm and legs twitching.

Neuro not available so phoned the Paediatrician upon return. Says it definitely sounds like seizures, we need to keep an eye on her, neither of us want to do any medicating at this point. Home could be the best medicine. She was extremely tired and overstimulated. My worry is that she has never done this before (or that I know of) during similar periods of exhaustion. So what is going on?

Yesterday at home, she woke with a bad headache and extreme nausea. She had a tiny internal nose bleed.

Waiting to hear from the Neurologist- Update - got an email. She wants me to let her know how B is after the weekend. Can up her new migraine meds which are actually used for epilepsy in higher doses but right now I do not want to do that, the side effects on a higher dose don't justify it unless we see more of these new seizures. I feel like even more of spy now...watching her all the time. Poor kid.

Why does it seem like we are always dealing with something else? This is scaring me now. Its new territory and I don't like it.

A wonderful week

Every year, our charity, Special Kids in the UK, has an Annual Family Day where members can come along for the day or camp for a few days either side and we lay on entertainment. This year we held it in South Derbyshire again and it was a wonderful event. 49 families camped, over 200 people. Some highlights are as follows:

The adults do space hopping......

B and C play ball......

A duck comes to visit post rain shower....

A fab time was had by all on the bouncy castle:

B decides to have a go at bouncing on the hopper.....and then falls off...:)

We remembered some of our children who have passed away by releasing balloons in their memory.

and B tried out her new Brum lights as well as a few glow sticks:

Many of the kids did a treasure trail:

and a beautiful girl called LF, one of our camping neighbours, showed us the definition of independence in her new chair:

It was a wonderful week. Thank you for all those that helped with the preparation, the activities and the putting away.

I rarely get ill

but when I do its at the most inconvenient times! I have two large vans to pack - one for camping stuff and one for SK stuff, a 100 chores or more to do and I feel like carp.

and I am deliberately not looking at the weather forecast

Need anti-sickness, anti-tummy cramps and anti-headaches vibes. Also would quite like a jolly daughter too cos I seem to be getting the brunt of the effects of her lethargy right now!

This makes me feel better:

It will be just fine

Ok panic sets in as the time grows nearer. Our annual charity summer event this year is MAHUSIVE! 200 camping, 50 families, 260 on the Saturday. I have been working my birkenstocks off the last couple of weeks sorting stuff and tonight I was finally able to SORT boxes. I have been dying to get the stuff out of the loft (aka the SK loft!) and mix it with the new stuff and just put it in to some sort of order. And this is just the stuff for the family day not any camping things! So I am happily surrounded by boxes and bags with labels written on by B so I may have a little problem reading them but hey its good to guess!

3 days til camping, 6 days til the sun WILL shine and everyone will have a fun day.

Right now I'm pooped, B is pooped and has feet like the elephant man and I am feeling strangely weepy for a few days. What I need is the smell of the grass, the feel of the ear plugs and the sound of a few gorgeous children's laughter's....all 146 of them............:)

If you are going, see you there. Our tent is the green marquee, not the white one :)

Some people are wonderful

B is lucky (or unlucky, depending on how you look at it) to be able to use the services of our local children's hospice - Chase at Christophers - which is situated in Guildford. She has been going there for nearly three years. At first she was very apprehensive about it all (as was I) and took til last year to actually want to stay there. Now she loves it. But these people do not just take your child to give you respite, they do so much more. They really care. They take your hand and help you through your journey. They listen when you need to cry and make you laugh when you need to laugh. Above all, they make B feel special. Every one of them welcomes her with enthusiasm and genuineness. They offer community support so a wonderful lady called Melanie comes to our house or B goes to her for the day at the hospice. Today we spent the day there, we both had reflexology and lunch and later a swim. B was very fatigued and got one of her headaches early on in the day but muddled through.

We are sad that we need their services but we are terribly grateful for them. They envelope you in their warmth and for a few hours make you feel safe. Above all they bring such happiness to B and so much laughter. Its truly invaluable. Thank you to all at Chase for giving us something to look forward to.

Makes you wonder

When a) you get a tax rebate cheque for someone else with the same name as you but actually lives in a different area sent to your address? I hope its wrong, I was expecting more b) your nearest town centre council decides to charge you (your daughter) £50 per year for the privilage of being disabled and needing one of their disabled parking spaces c) your other cat is ill, sneezing and bad breath, just when you think one being ill is enough....sigh...why do they come in pairs? d) you come back to England hoping it will be cooler than France so you can sleep and its not! I'm not complaining..honestly

Life is a mystery......

Vive La France

Whilst B spent six days at a teenage horseriding camp, me and M went to his parents house in France, a few miles from the Spanish border and about 2o minutes from Perpignan. It was lovely. We had muchas wine, good food and I read lots of books! Chilling out by a lake you can swim in, trying out a boogie board in the sea and M being proud of his french at the village pharmacy when I got ill on Thursday (too much sun I reckon!). His relaxing holiday included a 21 mile run up and down Las Islas, the local mountain whilst my exercise regime consisted of treading water for at least 5 minutes each time I went swimming :). Most importantly we needed to have a few days where we were close and not stressed or anxious about anything. And I am glad to say we did - that was until I phoned to check up on B on Thursday and to be told she is fine but she had a back ache on Tuesday and was quite low. Oh but she is ok now. Well, you know, its very hard to switch those niggles off then isn't it?

So I was very glad to see her this morning and we had a wonderful hug. She looks exhausted but it sounds like she had a good time. She even won the Fancy dress competition. By pure chance she got France as the country and went as a frog. Pictures to follow when her camera (disposable) is developed. Her riding went well and her giggles could be heard all around when she was trotting. I missed her laugh.

It's good to be home. My cats agree. They were very well looked after by M's mum who also cleaned all my windows inside, did some cleaning and left some flowers...What a lovely welcome home!