Crazy pets.

Sent to me by my big sis to make me smile

THIS IS WHAT A BAD MOOD LOOKS LIKE

THIS IS WHAT TIRED LOOKS LIKE

THIS IS WHAT SORRY LOOKS LIKE

Hey good looking

just keep yourself safe ok? Beat off those nasties, tell them to go away and remember that we love you; our beautiful girl.

Laughter

IS the best medicine.

On a lighter note...

Just found out that Beth's hospice - Chase in Guildford - have given us 3 tickets to see Disney on Ice's Finding Nemo in October half term.

YEAH! What fun!

B and I will go with her Godmother, Julie, who is a big kid too :)

Is someone trying to punish us?

I think its very ironic that on International Ataxia Awareness day I find out that B has had more seizures. Tuesday apparently. Two lots of "absence" lasting 5 and 15 minutes...15 minutes is a LONG time not to respond to someone asking you if you are ok, trying to get your attention...30 minutes and you are calling an ambulance....

what the hell is going on.....

leave her alone...whatever it is...its not going to get her, I wont let it.

25th September - International Ataxia Awareness Day

Photo and video editing at www.OneTrueMedia.com

I am writing this tonight because I am working a 12 hour shift tomorrow at the hospital so will unlikely get a chance to.

When B was born over 13 years ago, I would never have dreamt that B would end up with an extremely rare condition called Ataxia Oculomotor Apraxia 1. When she was 3, I have never even heard of ataxia. There are a handful of children in the UK with her condition. A few hundred in the world.

Ataxia means "problems with balance/co-ordination" and it is a symptom. http://www.nhsdirect.nhs.uk/articles/article.aspx?articleId=2292&sectionId=10

It is not a condition on its own. There are many types. Some children are born with a condition where ataxia is a feature and it doesn't get worse. Others get a condition, during childhood, such as B that is generally progressive in nature. Some are pure ataxias, others are part of a wider disease. Some people get an ataxic condition as an adult. Most are genetically inherited, it used to be mostly recessive in childhood, mainly dominantly in adulthood but nowadays its a mixed bag. B's particular type causes the cerebellum to shrink during early childhood causing her very wobbly body, causes her eyes to not move correctly and then due to a protein deficiency the DNA repair in her nervous system stops working so gradually she has lost/will lose complete sensory feeling and motor use between her brain and her arms and legs.

International Ataxia Awareness Day strives to raise awareness of all of this and to make known the amount of research that goes into helping those with progressive ataxias and to find reasons behind these faulty genes.

For more information on Ataxia conditions and the charities that support people like my B, go to
http://www.ataxia.org.uk/, http://www.atsociety.org.uk/ or http://www.ataxia.org/

Thanks for reading.

What day is it? and do you know how much I love you?

I really thought it was monday.....it isnt is it?

I am starting to get used to my B not being around in the week. I miss her so much, the past two weeks have been really hard but I know she is ok...as long as I do not hear from her, I know she is ok. I just have to get used to the emptiness of the house when she is not here.

As a family, our sunday was wonderful. As a family, we do laugh. She laughs, we laugh. I love them both very much. My beautiful B and my wonderful M.

It really is.....

The Cat's Whiskers

Today the 3 of us went to RHS Wisley. We have lived in this area for 7 years and we have never visited. It was a beautiful day and the gardens are just wonderful. They had a sculpture exhibition on too.....Some highlights:

The hungry carp

The Mesh Muse

Giant rhubarb - imagine the crumble!

Ahhhhh a pumpkin patch

this amazing sculpture - from the front/side

and then from the back

Wolf - Mother and Child

and the best display of all

Save the parents

First we had

and we thought we may just about be able to bear it..

Then this came:

and the cheesy factor got much bigger. Posters of Troy are taking over my daughter's bedroom. The swoon factor is high.

And when we thought we just couldn't possibly have to sit through one more viewing or listen to one more song, this happens:

No in theory it isn't the same. But in reality it is......because what it means is

a) being played and played every day on the channel that provides it

b) being taped again and again by B and watched again and again even though she has seen it 100 times already

c) a demand for the soundtrack so we cannot even go out in the car without it following us

d) posters for the lead man boy will turn up on her bedroom door (the outside - which you see as soon as you walk through my front door)

e) Christmas list will be Camp Rock dominated......and before we know it

WORLD DOMINATION!!!

but hey there is always this to look forward to:

Joy.......

School Transport

sucks..

enough said

things that made me happy today

In order to help myself apparently I have to make this list daily. I will likely move to offline but because my handwriting is far worse than my typing skills, today I am doing it online.

So today what made me feel happy or good.

- That I managed to get back to sleep at 5.30 for an hour after being up since 3.30am for no apparent reason
- The fact I could still get into my jeans ok
- I actually got up and went to East London on my own to a disability exhibition. Usually I would have found an excuse to tell myself not to go. (it wasn't that great, but hey!)
- I went to the gym!
- Beth called me!! (top marks for that one)
- I did some stuff on SK that I have been putting off for a while.
- My quarter pounder with cheese at lunchtime. mmmmmmm
- I kept my cool when the council tell me I need a heavy weight restraining system in the van for Beths Balder..but then I do not have the quote yet from the company. so watch that happy space.
- It was a really pleasant day weather wise.
- I spoke to my friend F who has had a rough week
- My rechargeable battery charger came. Believe me, my camera eats up batteries! (also family trivial pursuit came at the same time...a little side purchase there!)

Ok little things, but little things add up...

Tragic reminders

I hope the person who told me this does not mind me blogging it but its been on my mind since yesterday. Occasionally this person used to mention a boy whose parent they work with. A boy who has another form of a degenerative Ataxia - a coincidence in itself as most ataxias are rare.

Yesterday she told me that this boy had passed away in August from heart problems - often associated with that type of Ataxia. I am assuming she didn't tell me at the time because she knew it would upset me. It upset her understandly because she has spent many years hearing about his son, she felt for him, being able to associate with their situation and also the news brought fear to her heart for B as she is very close to her and loves hers dearly.

I can understand that fear. That is two children within a year who had an Ataxia that I know of "personally" who have died. One was 15 and this boy 18. My B is 13 now as the years progress, the risk gets higher. I hate that.

When you read this, you can perhaps understand a little more about why I get so scared about B especially when she see new developments which actually effect her health and progression of the disease itself.

And that is also the reason why I DO treasure each day I have with her. Because tomorrow is too much of an uncertainty not to.

LOL this is just so typical

Ok, by order of the powers that help, I decide to have a nice relaxing bath tonight and get lots of tea lights in candle holders and have a lovely bubble bath surrounded by this beautiful ambiance.

UNTIL....

I lean back and get a bit too close to one of the candles and there is a whoosh and I smell burning hair...!!!

Put my hand quickly to my loose pony tail and smack it, to put out the fire and come back with a hand full of black distegrated hair. I haven't taken it out of the bobble yet to really check the damage.

But isn't it just so typical? So much so that I just find it funny.......even attempts at relaxation have disaster written all over them!

Or maybe I am just a dizzy blonde....:)

Slap me around the face will ya

I realised earlier on why I have been feeling so blue. Firstly I spent many hours for months working towards the end of my first year as a student nurse but also on organising the annual event for Special Kids in the UK. It kept me busy and I liked it. After that, everything seemed to go back to some kind of reality that I just find hard to face. A slow period of time when all I could focus on was what was happening with my B, the new developments and the thought of her starting the new school year with a new boarding house, teachers, therapists etc. I haven't been able to face other's, as hard as that sounds and when my friends childrens get very ill, I feel such fear that I want to run away from it whilst at the same time being there for them too.

and then B went back a week ago, and I felt like I had been whacked with a hammer.

and still now, I feel so flat. Tonight I realised, I miss the business of stress that keeps my mind occupied and away mostly from horrid thoughts. Most of all I miss my daughter whom I spent a wonderful summer with. These weekends she comes home are too short.

Tonight she sent me a text message which started with "I miss u".

then finished with - "and I don't have any school trousers to wear tomorrow I have to wear jeans".

That whole text is so typically her. If you know her, you can hear her saying it. Statements of fact.

It made me sob...and then it made me laugh out loud.

I have started to feel that I have no right to feel this way when she is at such an age but I do not feel any different now than I did when she was that cute six year old. She is still my baby and I want the best life and the least hurt for her. I am so confused and terrified about her having more seizures that it is taking over.

I just wish I could get out of this funk because I feel so sad and I don't know where to place that sadness right now and I don't want to bog people down with it either.

I need to get busy....

actually I think I need that semi circle of tents back again....

Have to share this

sent to me by my sister...just made me chuckle so much

Little boy asks dad where poo comes from. Dad explains food passes down the oesphagus to the stomach where digestive enzymes induce a probiotic reaction in the alimentary canal to extract protein before waste products descend into the colon and rectum to emerge as "poo".

"Blimey" says the little boy "and what about Tigger?"


LOLOLOLOL

The aftermath

So B gets home at 6.20, she has been waiting/in (and out) of a van for the past 3 hours! When she gets through the door, she immediately bursts into hysterical crying. The whole original van experience has traumatised her AND the foam for her foot in her right piedro has left a fairly deep depression so she is in pain.

The outcome of this inadequate transport saga is now B says she will not go up any ramp in her Balder. Some of you may recall the effect of tipping backwards in her power chair at camp a year ago and a year later she will still not go up slopes easily and always wants to hold a hand.

So now because of their stupidity, we will have an issue getting her up our portable ramp into houses etc. and I know she means it. I know her too well. She was SCARED she was going to fall off. and she very nearly did.

Sometimes I wish people would think. It is never cut and dry with our kids.

The good news is that she is absolutely fine in her room and in her new boarding house. Such a relief. Except Balder came to fix her armrest lever she broke the first week she got it. Then Thursday she broke it off again. Whoops! Too narrow doorways I think.

The best part of her coming home was this on her t-shirt:

Proud....

Stupidity of some people

B isn't home from school yet. New school hours dictate she leaves an hour earlier so old transport is unable to bring her. So with new transport she should be home around 4.15. 15 minutes ago I get a call from school. New transport did arrive on time. Get B on but can't fit the other girl on. Transport has a ramp not a tail-lift. B reversing out nearly falls off the edge, member of staff had to grab her. Escort doesn't speak much English except apparently the word - OK - how wonderful that would be in an emergency. Old transport driver been sent to pick her up whilst new one takes the other girl home. B will not get home until 6.

How stupid. I rang the transport management company as it is a new contract. They apologetic and are going to terminate their contract on Monday and find a company who can fit both girls in, with a tail lift and an escort who can communicate!

Teething problems they say. Funny how many people I know who have teething problems across the country with their children's school transport. It isn't that hard really is it? Surely!

Bad luck

Now for those who know me, its no secret that I love cockles in vinegar, from my days of growing up at the seaside. Now as an inland resident, i have to content myself with jars of cockles. Yesterday I found a surprise in my jar.

*

I guess he was in the wrong place at the wrong time. Poor wee chap.

*pencil added for scale and yes the crab is dead!

I think I am addicted to herbal teas

I seem to have collected the past few months a number of different and very interesting flavour twinings herbal teas. One for every mood it seems. There is the Peppermint one for when heartburn and indigestion goes mad, the chamomile and honey one when I want to relax and the CALM one for when I want to pass out. Then there are the red berry ones which to me all taste the same - like Blackcurrant lemsip without the paracetamol. One has ginseng in it but it doesn't seem to work for me :).

I chucked Pear and Apple because quite frankly it tasted like dishwater and I couldn't figure out its benefit but I don't mind the Green Tea one.

The one's individually wrapped sit nicely in my newly bought Ikea teabag container. Whereas the others have taken over one of my larders and have pride of place next to the Tetley's.

I wonder if they do one for anti-ageing? Will peruse the shelfs next time and let you know.

Warning - do not drink too many CALMs or calming teas. It is easy to remain that horizontal.

Little arms and little legs

Yesterdays challenge was to keep my mind off B and to take a four limb blood pressure from a 2 week old baby. Not easy. Never done it before. Had to borrow the cuffs and machine from SCBU as ours were too big. Have you ever tried to uncurl a newborn baby's arms and legs ....IT IS HARD! Managed to get both calves and one arm but the other arm would not play. Baby was very patient but after a while had had enough so had to be consoled with mums milk. Success - one calm baby, a little floppier arm - 4th BP and Sats too! woo hoo.

Small update

B has to stay off her feet until at least thursday when she sees the doctor. Her feet are swollen, freezing and pressure sores are developing on the balls of her feet. Due to her neuropathy a bruise from 3 weeks ago is still there and a new one developing. They are going to review her orthotic boots. They want to get her back on her feet as soon as possible to maintain strength in her legs but she cannot stand without pain right now so that needs to be addressed first.

I spoke to the Care Manager this morning about how she was overnight etc and whether she was settling in. She said she seemed ok. The fact I havent had a text message or a phone call is a good sign and I feel a bit better about it. I told the Care Manager I wasn't happy about B being at the end of that corridor especially after what happened in the summer holidays and we agreed if she isn't happy then it can be reviewed. B may wait until she comes home Friday to let me know how things are.

I'm so tired. I didn't sleep very well, I cried alot last night. It is really really hard to hand over your unwell child to someone else. I know in my heart they will look after her. They always have. I am scared stiff she will start having seizures again once school gets going and she gets tired.

I need some emotional time out. So if I am quiet, that is why. Too much going on and my brain is going to explode.

take care

Can't think of a title

and I cannot be funny. Tonight I took B back to school after the 8 weeks of her holidays. Holidays which we spent so much time together and I loved it. We laughed, we fought, I looked after her wounds and I just looked after her. Holidays that brought new medication, new developments - seizures and bad feet. She went back to a new boarding house, new therapists, new class etc. It appears she is not sharing a room and she is at the end the corridor. My heart just sank. Ok, I was verging on hysteria about her coming back anyway but this was a little too much for me to bear. B, she appeared to be ok, but I know her. Her new Physiotherapist seems on the ball, whisked her up to medical centre to examine her feet which have been hurting her. Seems she is developing pressure sores, her feet are ice cold and swollen. Wrapped her feet up and fitted her for a hoist sling and she will be hoisted for the time being. She will see the doctor in the morning.
I tried to make her room B friendly. High School Musical poster and her new quilt. The teddy bear I bought her for her birthday, her photographs out.

Time for me to go. She starts to cry. I cannot help but also. I leave as to stay would not help. I cannot drive further than 100 yards because I hurt so much. I want to go back and get her but I know I cannot. I cannot bear the thought of her feeling sad or lonely or of needing something or someone and not feeling she knows them enough to ask. I cry all the way home. At home, M holds me and rings up to see how she is. Even says we are disappointed about the proximity of her bedroom. They say she is ok and she is sleeping. I beg him to ask them to keep checking on her.

I miss her so much. I love her and want her to be ok. I hope she is ok. I am so very scared of not seeing her again. She is my B....I love you sweetheart.

Well done M

4 hours 31 minutes on his swiss, im running up a mountain, marathon. Was slightly disturbed when got a text from the automated system that tells you progress at 2 hours 48 minutes saying he had finished. That was near on impossible. Apparently it was a mistake!

Wish I was there with you to celebrate. Have a great evening and above all - SLEEP WELL!
Love you
Rx

The desperation of families of children with special needs

Why is it that parents/carers of children with special needs (and adults) have to get to desperation point before the services help? Our situation: Beth was still on her feet and it was hard work. She was battling with keeping upright and fine motor skills as well as the emotional difficulties we had to deal with. After going through some of the motions, our social services department decided we didn't demonstrate the need. Eh? I was rock bottom emotionally and physically. I couldn't go on. Asking for help is the hardest thing for a parent to do. It is not made lightly. To do it then to be told hey you are ok, is bull.

So why years on does it still seem to be the same? Every day I know people who are desperate for help, for respite, some time to relax. They love their children but they do not know how to cope. I can understand the mum who jumped off the bridge with her autistic son. She did not know what else to do. She was DESPERATE. I do not condone her actions but I can associate with it. Postcode lottery is the fact of our country. Why should it be? Everyone should have a right to help if they need it? And of course my biggest bug bear is those who have children with autistic spectrum disorders or behavioural issues. Why the services make it much harder for them to get help I do not know. It must be HARD! A child who smears their own faeces, a child who will not socially interact, a child who ignores you, others or screams/shouts for so many hours a day.. Why does that not warrant help? Beats me!!!

Most of us who have children with special needs do not ask for it. We love our children more than we can say, for like any child, they bring so much to our lives but we can't always cope with the increased demands. I just wish that it was recognised HOW difficult it is and people are given help before they get to the stage where they feel they cannot recover easily.

It is hard to ask for help. Professionals should remember that. And when it comes, it is hard to let your child go even though inside you know it is the right thing to do for all of you. Understanding of all of this needs to be paramount. I wish it was.

For my very athletic man

From me and Squeak Alot.

Good luck tomorrow on your marathon up that very large mountain - Jungfrau - in Switzerland.

I am sure you will do very well and we will be thinking of you whilst we are relaxing in our comfy house with our feet up with a glass of wine for me and an apple juice for SA. Oops sorry, loads of encouragement here, honestly..you will do just fine and enjoy those energy bars..

love you
Rx

One year on

and B is still getting headaches. They have gradually got worse and not responded to any preventive medication. Thankfully an MRI rules out tumour or water on the brain. Rest at school helps at school but episodes still occur at home. Fast forward to this summer. Her neurologist starts her on a drug called Topiramate which at is in higher doses used for epilepsy, in lower doses for migraine. So the start of the holidays, we start her on the small dose and gradually increase to the recommended level for migraines. In the meantime, she has those seizures and sickness, headaches on return home. So there is some thought by her neurologist that we may need to increase it up to the epilepsy levels. That is not what I want right now. But I say, last week, the good news is that since she has started she has only had those couple of headaches. Fast forward again to today, a pale wiped out girl, two headaches and a spontaneous vomit later over the course of a week.

What the h*ll is it? If its not responding to strong migraine tablets, is it in fact seizure activity? Migraines and seizures are often mixed up. What if in fact these migraines over the past year, are actually seizure related? Who knows?

What I do know, is it kills me to see her get so unwell so often and not know why? It scares me stupid and it is so exhausting watching and waiting for the next thing to happen. Because it always always does.

and then there is her ruddy feet falling to bits and causing her pain all of a sudden. Just leave the kid alone. Please.

Ok the cat is taking the mick now

I sit down to do my puzzle, the coast is clear. Then Monty decides to join me.

Thus marks the end of my attempt at doing some of it.

I'm not destined to conplete it.

Back to school for me

Donned my jeans and picked up my pencil case and started year two of my nursing course today. This year we concentrate on child nursing rather than generic. From looking at my lectures to come, it seems I may get to make a toy! woo hoo. Be asking those that are very creative for some help there I do think.

Got an A in my assignment on Adults with Learning Disabilities which I am obviously very pleased about.

and find out we go out on placement in middle November for 4 weeks, have 3 weeks off then back out for three weeks.

In the meantime I start bank auxiliary nursing with Epsom Hospital Monday. Get to wear a lovely light blue dress. Will soften it up with my Eeyore name badge I think.

end of day one of semester one of year two, I stumbled to my car with my arms full of big fat text books ready to get going. What's the betting they don't get so much as a flick through in the next few weeks?

I owe you a fiver.