Mistakes happen

and I appreciate that but I am a little disturbed that medication can be given to my child when she doesn't actually need it due to a internal communication breakdown (and not mine). Not just once but for 36 hours. 12 tablets she didn't actually need and could possibly have caused an issue with her blood volume. Luckily GP says no, should be fine. Big Phew!

I don't want to say where cos I do believe its a one off mistake - well I hope so. But it wasnt school in case you were wondering.

Just proves I need to be vigilant so much of the time.

Well she once again proves

she is a determined young girl..she didn't get Head Girl but she is Deputy Head Girl...she doesn't really know what it means but what it means is that other pupils like her enough her to vote for her. When I asked her if she had to go up in school assembly she said yes, and was she nervous? no I wasnt. A year ago she would have been. Who cares about the rest of it. The fact she felt confident in that moment is a massive achievement to me.

I love her very much. She is one brave star..

Keeping my fingers crossed

B has been nominated at school for Head Girl. The elections are tomorrow. She is up against seven other girls. It's lovely to see the nominees. A mix of disabilities, some non verbal, severe, others milder. Its equal opportunities at its finest! The nominees include a couple of B's friends so hope that if she doesn't win she will be a good loser!

I think I would burst with pride if she got elected. Imagine. OMG! When I asked her what it means, she said she has to have meetings with the Head Teacher...That is bravery in itself (he's quite scary!). But for her communication skills, it would be a great opportunity and for her confidence.

But if she doesn't win then the fact she has been nominated is fantastic anyway.

So excited....

R

Scared

Last night B had a nightmare. When it happened, she completely freaked and had a panic attack, was hyperventilating and eyes rolling and darting. I didn't know what was happening and I was so very scared. I thought she was having a seizure at first then when I realised she was having trouble breathing I just panicked. Luckily soon after by stroking her face and talking to her, she calmed down and I got her to take deep breathes and I found out then what had happened. She had a nightmare that her friend was attacking her. I ended up sleeping with her as she was very scared. Her sleeping bag was saturated.

It was the scariest thing i have ever witnessed with her and I thought she was going to die. Of course she wouldn't have but my logical mind went out the window at that point. And now I am scared about it all, of what I saw, of what might be. Illogical thinking, possible future, not our yet reality. I know. But enough to make my heart hurt since. And then Saturday night she did something similar?

Please keep my B safe for alot longer.

A picture of beauty

Taken by my friend last weekend at London Zoo

Amazing

I am a little apprehensive to shout about this as yet so treading quietly. But a family member last week with whom we were celebrating father's day, was animated about B's speech. She said for the first time ever she says she is speaking in full sentences. I stood and thought, no she can't be, her sentences are always started half way through, so you often have to get to grips with what she is talking about by powers of deduction. Or she hesitates and has bitty sentences.

But my mother in law was nearly in tears over it so I have been listening. and I think she may be right. All of a sudden, B is talking in proper sentences. Not all the time mind but who cares, she is able to say something from start to finish and it makes sense! Has she turned a corner? I really really hope so. Her speech is still slurry at certain times but others its as clear as anything.

Keeping everything crossed its progress because we don't get to celebrate much of that and it would be fantastic if she has improved on this as communication is something Ihave been really worried about.

Watch this space.

Pet Cemetary

Cue the Psycho music..its that time of year. The time that my cats become real predators and bring home their prey to mum. Thanks but no thanks. Yesterday at 6am I got up to half a mouse at the bottom of the stairs (where is the other half?? ugh!). Today I came home to a dead bird.

Okay I get that they can catch things, there is no need for them to present them to me.

However the pits is when they are still alive. Chasing a cat around a house with a bird or mouse in its mouth is no fun. I HAVE to save them though. I cannot bear the thought of them playing with them and the little (except the blackbird which wasn't so little) things suffering. Yes I am nuts but hey I can live with that (most of the time!)

I want to know whats wrong with the fake fluffy ones we buy them? Much more civilised

R
(who left the half mouse for M to pick up....too early for me!)

Sometimes we live in a cocoon

I found out something about a little girl who had come in for an operation. Something that you could only feel horror at. What she has obviously been through and how it was done...I feel sorry for both involved. I felt sick but more than anything I felt sadness. Her behaviour made sense, her need for a friend even more. Sometimes the blinkers need to come down and you need to see the world outside your special needs own.

I don't pray but I hope that something or someone will look after her.

Roll on the Neurologist appt

More headaches for B. Medical centre just been on the phone. Even by upping her preventative medication she is still getting them. Ok maybe they are life threatening but they are really taking their toll on her. Most weekends she is laid up for at least a while with one or two. What can you do though when you don't know why its happening for sure?

Just think its so unfair when she has so much else to deal with. But then I suppose I would.

Seeing her Neurologist in July. Will see what she suggests. I also think its time to look at whats happening with her swallowing. I don't want to do something unnecessarily but this coughing when drinking isn't good. Silent aspiration is my concern. Again will see what the Neurologist suggests. Hopefully the Paediatrician will be there too.

Oh well, a nice weekend coming up for B including a day at London Zoo on Saturday on their special needs day. Please send no headache vibes her way so she enjoys her day.

Guess what colour....

B chose for her new wheelchair.

Answers in comments please......ok its not that hard if you know her well..

Do we frighten OTs away?

Our new OT from Social Services has just told me she is leaving in July. She has been B's OT for 3 months. From my calculations that makes her the sixth one in 3 years. Apart from the fact they just get to know B and her needs and then they go, what also happens is that any outstanding work or orders seem to get lost in the induction of a new OT and appear 3 months later as a " I don't know what is happening with that" statement. Cue our new grant for a new door ramp. 9 Months since discussions started. 7 months since the new door was completed meaning the front porch is at a different level to the ramp and thus a little dangerous (and also falling to bits). That's ok. Its only a heavy powerchair going over it all the time. I am sure it will hold just fine...

She came round two weeks ago to assess B's transfers and my posture. Since then she has found B an alternative to the really impractical heavy rotunda transfer which we lugged up to the loft some time ago as it wasn't being used. Great - a lighter solution and some tips too. Great I say, can you come round early July. No sorry I will not be here then so someone else will need to do it. Whomever takes over, whenever they catch up with the handovers more like.

Seems like a constant state of handovers to me. Do we smell or is just a job they just don't like?

and you know what it means. More chasing, more phone calls and me doing their job for them once again.

Deja vu......and again....and again.....and again

I love my placement but I am sooooo tired!

I am having a really great time on my placement. I love (most of) the kids especially the ones who draw me pictures :). I love the busy times, taking kids to theatre, looking after them after and multi-tasking and I love learning new things. I absolutely know its necessary but I am POOPED! Four 10 hour days (starting at 7.30) with very little sit down time does take its toll. All worth it I know but I am allowed to say I am just plain tired!

Sometimes I have moments of am I cut out for this when I get a bit scared about something I have to do which I am unconfident about but I am pushing myself and trying to be strong and take any criticism as constructive rather than burst into tears!! Which wouldn't be good! (yesterday, bit tired, had a little tear over something really stupid. It is ok, no-one saw!).

This morning I had to work my socks off whilst the other two students weren't there and everyone said I really stepped up to the mark. It felt good but then I felt bad because the other two weren't given the same praise and I didn't want them to feel yucky about it. Hopefully they didn't.

Now I just need to find time to finish my assignment, practice for my practical exam and revise for my written exam....good job B isn't here during the week isn't it! Bless her.

New Photo Montage of B

Did an updated one. From birth to now.

B's Photo Montage

Take a peek and use sound if you can

Bring on the lettuce!!!!!

Two weeks of Weight Watchers, a massive cut down on wine intake and regular gym - I HAVE LOST A HALF A STONE!!! in two weeks! fan blumming tastic...and I can really feel it. One stone to go til my target weight (for now!)

I am sure walking what feels like a thousand steps a day in the ward and around the hospital is helping. Must wear a pedometer to see how far I "travel" each day.

Fancy a MacDonald's now.....:)