Vulnerability

Today I had an insight into how vulnerable my daughter is. How events could turn out differently if things are not handled the right way. I went to her school at 10.30 to pick her up for an exciting day. We were going to visit the college. I got there and walked into the duty room and asked the carers present if B was around. They said no, she should have been here at 10 but we haven't seen her. They then proceeded to ring up the school reception to find out why she hadn't come down. Whilst they were doing this, I decided to walk the 10 metres to her bedroom to drop something off. As I got near to her room I could hear hysterical crying and her door was shut. SHE WAS IN THERE! I opened it to find her in a right state. Apparently she had come back 15 minutes earlier and gone in to change her t-shirt and shut the door. Why she didn't call someone I don't know but she was distraught at being there on her own for so long.

I walked back to the duty room, noticeably angry. They were apologetic and said she normally says she is back. Well this time she obviously didn't. I got her calm and took her to the college where we had a fabulous day.

Upon return I spoke to the care co-ordinator and expressed my concern that no-one could account for her whereabouts from the time she left her class at around 10 to when i arrived at 10.30. Anything could have happened. She could have had a seizure, she could have been driven off by some stranger (cos believe me if they said they knew me she would go!) or anything. And why the care staff didn't ring to see where she was when she didn't arrive by 10.10 I do not know.

So a message left on my ansaphone when I get in by the Care Manager. Its unacceptable what happened, she is investigating why no-one followed up where she was etc. I should think so too. I trust the care manager and coordinator to find out and action accordingly.

People think she is more independent than she is. They look at her and think she can cope. Well clearly she cannot. I entrust them with her care and they have to realise her vulnerabilities. It breaks my heart to think of her sitting there crying, isolated for 15 minutes without anyone coming or hearing her! But the fact it only takes minutes for someone to be taken advantage of just makes me feel sick.

The talk of gaining independence when they get to college worries me silly...I hope she can find some ways of coping but I know she will never be able to live alone even if her condition didnt continue to degenerate. And that in itself makes me feel so sad.

and off to Cornwall they went...

Year 10 (half of - about 8 of them) Residential trip to Churchtown Cornwall. An organisation called Vitalise that specialises in outdoor and indoor activities for people with disabilities.

http://www.vitalise.org.uk/Vitalise-Centres-and-Services/Group-Activity-Breaks.aspx

B had a fabulous time and did things she has never done before...watch the video for pictures. It has music if you like that!

Juggling

I'm sorry if you are a regular follower of my blog and haven't had much to read lately. Life has taken over big time and I have very little time right now for much. So if I owe you a phone call or an email too, I am not ignoring you I promise!. B is doing ok. Her kidneys have the all clear, she is now completed her transition to her new epilepsy medication - Lamotrigine and is reducing her old one - Topiramate- but will remain on a small dose to help with her headaches. Despite having a 3 minute partial seizure in the garden centre the week before, she had no seizures on her residential trip and had a fab time! She even went to bed early when she was tired!!! Will get some photos to upload. Apparently she went canoeing, wheelchair abseiling, archery, problem solving, campfire marshmallow melting etc etc. She loved it. She is doing ok.

I started my new nursing placement 10 days ago and haven't stopped since. Working every other day mostly 12 hour shifts and visiting a very poorly friend in hospital in between. Thankfully she is home now. Found out two days ago that I have in fact worked far too many hours in one week so now have four days off! Yippee...i need it, I am so exhausted. My feet hurt too! lol.....the placement is ok. I'm trying to get used to the people. It's not been easy...I wont say anymore but hopefully it will get better. The children coming in are a variety of respiratory issues, fractures etc, special needs, teenage ODs, and much more so lots of good practice I am getting (when I am allowed.....). Right now I am scared and a bit stressed about the next couple of months. 5 weeks of placement to do, a 2000 word assignment, revising for a 3 hour written exam and practicals. This semester is supposed to be the hardest of the 3 year course....so I hope i can get through it....So if I am quiet, its mainly because of that. If anything happens with B, I will let people know.

Take care of you and yours xxx

Whats in the bag?

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Yep its Beths new Hippocampe All Terrain wheelchair. Makes going through mud, sand and off road a whole lot easier! Thanks to the A-T Society for giving us £1000 towards it.

I think M was having more fun with it then B though!

Vibes needed

Small ones maybe. B is going on a residential school trip thursday for a week to Vitalise, Churchtown, Cornwall. A fantastic trip with lots of outdoor activities including abseiling, kayaking etc and alot of fun to be had. So why I am so worried? Because since last augusts onset of seizure activity, if she gets slightly exhausted or unwell, the seizure monster rears its ugly head and I just know she will be getting less sleep/rest when she is there and doing far more than normal. Ok, nursing staff on hand. Its fine, really...it needs to happen, first trip away without me since these bu**ers started..has to happen...
I just hope she will be ok...everytime i think she is doing ok, it happens again, slightly unwell in the holidays and she has a complex partial seizure in the garden centre...

anyway fun takes precedence right? she needs to have fun...and i have no doubt she will...just keep her safe all those miles away from me please. If it happens, please let someone give her lots of cuddles and tell her its ok.

me and my girl

Little things

make me cry....sometimes when I am feeling proud, happy or sad.

Today it is the fact my darling daughter who probably in another body with another (healthier)brain would not be asking me

"Are you picking me up after lunch or before lunch friday?"
" about 2.30" was my response
"Is that after lunch or before lunch?" is hers......

14, not able to tell the time...

sometimes little things...