Happy Halloween

Today we went and did this.

Six inches off and she looks wonderful! I had mine cut to neck length.

and then we tried to make this:

it is supposed to be a bonfire cake (see the bonfire in the middle, the flames/fireworks and the catherine wheels)...we are proud of it, even if it's a bit sloppy/lopsided and I had no orange food colouring for the icing. First time i have made a cake in years and licking the bowl still has the same attraction...

We had a nice mum/daughter day today.

Challenge for you - things to make me laugh

In need of some chuckles, so please post in comments anything that you think may make me laugh or even smile!

but beauty does come in threes

My weekend in Switzerland

My god-daughter

Her sister
and the newest arrival

And aspiring to take after her Gotte?

I had alot of "plasters" put on this weekend :)

I would actually settle for bad things that come in threes

would be quite nice actually rather than in droves!

Lets pick the main three though from this week:

1) Some kind person takes £1100 out of my account without asking (half isnt actually money I have so now my account is a brighter shade of pink i.e. RED!)
2) Today I fall down the steps at university and have suspected broken thumb. Thankfully its just majorly swollen and is now strapped up...its my right hand...yes I am right handed. Lovely big sore hip too,
3) B had another seizure at school.

ok with my glass is rarely half full head on I can say
1) I will get it back in about 3-4 weeks hopefully. In the meantime I can live off my partner
2) It isn't broken and I get to take some painkillers that give me the same effect as lots of wine without having to pop a cork.
3) sorry, can't think of one for that...

hey not bad for one handed typing!

Losing one of our "family"

Yesterday we lost one of our special needs family. A child who suddenly got ill and has been fighting for a week to stay, with 100s of mums and dads across the UK willing him and giving him strength to fight for a bit longer. He decided it was time and now our community opens its arms further to virtually hold his parents and other loved ones.

We all feel it, for them, for us and for him.

Go play little man. It's ok.

Friday

A morning of paperwork - letter writing, SK stuff. Making a few phone calls where no-one is around which is hugely inconvenient to my well planned day - that throws that out!

I attempt to tidy the living room - how do i get so much paper to throw out? Where does it all come from?. Half of it seems to be because someone has decided I like children's catalogues, you know the pretty pink bedroom type ones. Well a) my child is 13 b) my child has special needs and can't use all those great fiddly things you put down there nor the lovely fairy castle bed c) how many different companies are there out there that seem to sell the same thing? and d) WHO? gave you my details in the first place. Please do thank them from me.

I go to Windsor to meet an old friend whom I haven't seen for ages. We had a catch up over coffee and a quick look in H&M (and I bought a skirt and top each for me and B) and Zara (in which she buys the most beautiful dress and I convince her that her knees do not look knobbly - they don't!) and then it was time for me to RUSH back to meet B's van due at 4. On way home, I ring school to find out how B has been. "Oh she has been great, she is here, do you want to speak to her?". What do you mean she is there? It is 15.25, she should be on her way home. 45 minutes later, it appears the transport company thought they didn't have to pick her up today. So she then had to wait for alternative transport. This is the umpteenth time since the beginning of term we have had transport issues.

I come home via the off-licence shops and admire the fact I can now see at least part of the table my computer is on.

Ah there is the dulcet sound of a large van approaching.....

finally she is home!

Edited to say: actually it wasn't her. It is now 18.07 and she is not home. Apparently though she is 10 minutes away. Over 2 hours later than she should be. Not a happy mummy here! Heads are rolling.....

How to tug at your mommy heartstrings in one easy step

An email from B from school.

I miss you
B

I miss you too baby

xxxxxxlove youxxxxxxx

Today was a better day

Uni was ok, the lectures were really interesting. Afterwards I got one of my presentations finished and spent 3 hours doing the other so its nearly done and felt much better for doing it. I revised by dictaphone for my exam and decided to start my cut down drinking again today.

So today was a good day

The Sleep EEG with no sleep

Today I took B to have her sleep EEG to see if we can get any hard evidence of the recent seizure developments. It consists of giving her enough sedation (melatonin) to knock her out sufficiently for them to capture what happens in her brain during sleep as her incidents tend to happen when she is exhausted.

But of course I should have known. The girl who at six had enough melatonin to knock out an adult and still wouldn't go to sleep, wouldn't today either. She dozed twice but got a pain in her knee both times that required repositioning (she is getting stiff knees very easily at the moment) and woke her up from her doze.

I very much doubt anything was caught. The technician said (and backing up what the Paed has said to us before) that sometimes nothing shows. Just recently a child whom the doctors felt very sure had epilepsy had their 5th EEG and finally they got something. All the others did not. Same with another little girl I know and the same with B. When we suspected just absence seizures, nothing..three EEGs before have shown nothing. Now there is more chance today's will because we have seen new types of seizure occurring and much more prolonged. But I very much doubt it.

Of course I don't want anything to show up but the fact its very likely she is having them, I would like some brain evidence, so we can say once and for all. I pushed the technician to tell me if she saw anything but she said she couldn't. I will have to wait for B's doctor to call me.

Anyway they finished, the doctor came in to make sure she was fit to go home. He said it has never happened before that someone hasn't slept on the melatonin and he wouldn't be surprised if she sparked out in the van on the way home.

nope....he just doesn't know her very well does he...
She is now playing the PlayStation. Right as rain...

Whatever the results it is agreed that we will medicate on low levels of epilepsy medication and see what happens.

Something to make me (and all those who need it!) feel better

From Lipstick Jungle....
IT'S OK TO LOOK!

All work and no play makes Robyn a dull girl..

for next week I have to prepare a 7 minute presentation on health factors that influence an adolescents growth and development, complete a 5 minute presentation on a summary of the 1992 white paper - Health of the Nation, revise over 200 slides for a mock exam on embroyology, growth and development for pre-school, school age and adolescence, attachment and bonding etc etc AND make a toy for a hospital staying adolescent and a 250 word summary on how it applies and incorporates a psychologist theory.

and go back and forth to school for various appts to sort B out.

best cork up the wine then and keep level headed for the next 8 days. mmmmm not easy when your emotions are running wild and your brain is dreaming every night about an annual event that occurs every august....i..e its just happened! why am i worrying about next years! its subconcious i promise!

padded cell may be good idea....as long as there are cockles, a good chablis and a decent fictional novel to lose myself in..

failing that under the duvet is a great hiding place.

Is there an art to hoisting?

I have hoisted B more times this weekend than I have in her entire non ambulant part of her life. She isn't allowed to stand transfer right now because of her pressure sores on the underside of her heel. Interesting it has been. What usually takes 1 minute now takes 15 and my back is killing me (Yes I know, it means I have not been doing it the way I have been taught in Uni but hey this is real life now).

But worst of all, is there a secret behind getting the hoist sling to fit perfectly each time? Its good that B has a sense of humour. I cannot tell you how many times this weekend a hanging loop has got caught and picked up a commode handle, a wheelchair armrest etc etc thus hoisting not only one young lady but the thing she is sitting on also. We did laugh though.

A couple of times she has been almost horizontal in her sling. Other times in a nice sitting position. Once we went up and down several times when the sling legs were digging a bit too deeply into her thighs. eek! quickly rectifed.

and how tempting has it been to say, oh just quickly shuffle round on your feet.......VERY! We had to once because she needed to lie on the sofa as she had been vomiting today. The sofa is to the floor so there is no way of getting the mobile hoist legs underneath it to do it. So we did a quick stand and shuffle and lay down. Had to be done. 9/10 times hoisting is gonna help surely.

So B and I are now expert hoisters...a real team. Just need some extra hours in the day to accommodate it now!

Old hoisty pic:

Top to toe? nope Top to Paw

sttreetttchedddd outttttttttttt

11 years of watching

can be slightly draining. Watching for change, the next thing, debating normal versus possible abnormal. Picking up the fallen child, picking up the many pieces, trying to fit those pieces continually into one everlasting puzzle.

but even then, even with some concerns on minor activity, I never thought I would need to buy this:

but it seems I do. Well they think I do. The outcome of this weeks Paediatrician appointment who had conversed with the Neurologist is that the activity last week and during august may be seizures, they may not but the description sounds like they are. Why now? They don't know. Yes her underlying condition makes her more subseptible but sometimes they just don't know why. She will have a sleep eeg next friday but even if it shows nothing which is not uncommon even with activity they will treat for it. So now her new medications previously for migraine relief are being gradually upped to epilepsy levels.

Good right? It means they will be treated, be kept under control. And if not, we raise the levels again. Fantastic. Great. Whoopy doo.

what it means is something else wrong with my baby, something we didn't mentally prepare for and something else we have to watch for, pick the pieces from and find their rightful place in her puzzle.

Some of you will not know what was said, as above, on Wednesday because I haven't shared with my family or non SK friends yet because I just haven't been able to get my head there. I have kept myself full-time busy since then. Now I have a couple of hours to cry and grieve a bit over it because it is breaking my heart but not too much, I just can't go there and I just can't talk about it with people right now.

I just hope the side-effects from the medications do not strip away her beautiful funny personality.

In the meantime, I am concentrating on another bit of her puzzle. Her increasing pressure sores on her feet. Let's get rid of them because that is the ONE thing we can.