January 30 2014

I took Helen upstairs and visited one of the other residents who enjoys seeing her.  She smiled at him!  This is the first time she's done that and he was really pleased.

We finished watching Scrubs series 2.  We are gradually working our way through Scrubs.  Helen used to watch the series before her accident and she still enjoys it now.

I told the nurse in charge I would like to see the GP when he was back from his holiday. The next time will be 18 February.

Helen went upstairs to physio.  She s always tired when she comes back from this - they work her hard!  I had a lopsided smile from her when she came back.  We playyed hand squeezing.  She squeezed my thumb with hers (right hand) and repeated it when I asked her to do it again.  She managed to move her head back when it fell forward, without help.  This is a big improvement as she usually can't do this.

More Fundraising!!

The girls and assorted friends and family are organising another fundraiser.  Tough Mudder!!!


Tough Mudder

"Tough Mudder events are hardcore 12 mile-long obstacle courses designed by the Special Forces to test your all round strangth, stamina, mental grit and camaraderie.  With the most innovative courses and 1 million inspiring participants worldwide to date, Tough Mudder is the premier adventure challenge series in the world."

Personally I think they are bonkers!!  But most of them have started some sort of fitness regime (or at least thought about one).

Link to join Helen's Hope team


Virgin Moneygiving for donations

The Green Ribbon and Brain Injury is BIG

Every now and again I change my profile picture of Facebook to the picture below.  I am trying to raise awareness of brain injuries and the effects on families and friends.  Brain injuries have such a devastating effect on everyone from the person involved to friends, family, work colleagues, health professionals and even people who don't know the person.

Brain Injury is BIG Charity

The main charity I am involved in at the moment is Brain Injury is BIG.   The group is a support network for people who have loved ones with devastating brain injuries. They may be severely disabled, in a persistent vegetative state, minimally aware/conscious or locked in.

The charity started off with 5 people all in the same place, in the same hospital, in the same situation.  It has expanded over the last 2 years to involve 270+ people, some of whom are overseas.

January 23 2014

Visited with mum.  Helen seems quite tired today and kept drifting off.

We went into the sensory room with Louise.  She showed how to how to set it up so we can use at weekend.  Louise also showed Mum and another mum the magic carpet and played with it.

Sensory Guru Magic Carpet

We watched Moulin Rouge together.  Helen was wide wake for most of the film and seemed to enjoy watching it.

The mental capacity form for Court of Protection given to Agnes.  She will fill it in and return to me.

I asked when next dietician review is.  I want to ask about omega oil and Actimel in diet. The next date is 25th February.

Her costume has arrived and I need to find out when she is doing hydro.

A year after moving to Holy Cross ....

A year ago today Helen moved to Holy Cross. No one knew what improvements she would make, or whether she would. Over the last couple of months there have been some encouraging signs - smiling and tracking people. It's only by looking back that we can reflect on how far things have moved on and how different she looks now.

January 20 2014

So I am slightly crapping myself. Tomorrow morning at 10am I will be on Radio Berkshire talking to Anne Diamond about Helen's accident, our fundraising and the Brain Injury is BIG charity.

BBC Radio Berkshire

January 18 2014

Visit with Rachael today.  We went upstairs to activity room.  I decided to try different music to see what she might respond to.  We listened to Eminem - no response: classical - some response: Moulin Rouge - listened to most of the album awake.  No smiles today but she looked at me and Rachael when we were eating and moved her mouth.  She also closed her eyes when I asked her to and smiled when we both said goodbye and kissed her.

January 15 2014

Helen is much more alert.  Spoke with Judi for quite a bit.  Helen is improving all the time. She is going to set us up in sensory room next week to watch Moulin Rouge and will get permission for me to have access at weekends with her.

Watched Scrubs series 2 disc 3.  She loves Scrubs and stays awake through all of it.

Got red book for everyone to write in when they visit.  Anything can be written in here relating to Helen and her reactions to anything, what was being done with her at the time, etc.  It's being kept in the top drawer of her small chest of drawers.

Spoke with Diane, the Chief Exec.  She has received copy of letter from John Radcliffe. I explained I had spoken with Mr Duffill's secretary and explained it is supposed to be a cranioplasty, nothing to do with hydrocephalus as they wrote in the referral letter to Southampton!!

I am also applying to the Court of Protection.  I should give Agnes as the contact for mental capacity assessment.

Spoke with accounts.  Helen hasn't got much in her account - about £10. I can send a cheque.  I need to pay £38 for her swimming costume for hydrotherapy.

Hydrotherapy at Holy Cross

January 10 2014

Brought more clothes for H today.  She is putting on weight!  She's got another 3 pairs of trousers (grey trackies, greenish leggings, black pattern leggings), 2 tops, heat socks & navy woolly slippers. These were all sent to the laundry for labelling.   

Helen appears to e developing a lump on the back of her neck, maybe her spine.  I asked one of the nurses to look it.  It appears when she is in her chair but not so obvious when she's in bed.  She will get the doctor to look at it. 

She needs some more palm protectors.  Hers are wearing out!!  This is the sort of thing she wears to stop her fingernails digging into her palms because her hands are contracted.

I have been looking at DVD's with short snips of nature, rivers, trees, waterfalls, birds, etc. Apparently they are good for stimulation. 

January 5 2014

Jon Jon got a big smile when he put Helen's head back and talked to her.  She also gave a big smile then a frown when he rubbed her hand on his beard.  She used to hate his beard!!  It's amazing seeing little flashes of the "old" Helen.

January 1 2014

Happy New Year!!

Visit with Rachael, James,Theresa & Isaac.   Weather was foul.  Glad we drove down in the daylight.

H gave a big lopsided smile when we went in and she saw James!!  Had her feed put into the rucksack and we all went upstairs for a bit.  H was very alert all afternoon.  I gave her a taste of ketchup and she pulled faces.  She was watching the boys playing. I have got to get her a cd done of classical music and drumming.   Both are supposed to help with concentration and with stimulation.

We sorted her room out - took down all the Christmas decorations and put a few pictures back up.  I have still got to get a hook for the disco ball.  Theresa wants to get her a new calendar - she suggested naked men!!  I left a note for maintenance to find out how long it would be before her telly was mounted!  I also left a picture of where I want the shelves put.  Once these are up Helen can have her DVDs on the shelf and her cuddly toys as well.