February 18 2014

Met with a couple of my friends who have a child in a similar position to H. They want to look around because they want to move him from where he currently is.  They met several of the staff.  Judi showed them the magic carpet, etc.  

Her tv mount has finally gone up!! 

I gave staff a copy of her hospital letter so they know what is going on with her referral to Southampton.

Helen seems quite sleepy today but she watched Scrubs intently later in the day.  She made a noise like "hum hum hum" - a proper sound, not just noise when yawning.  She was moving her mouth at the same time.  It's the first time I've heard a proper noise coming out!

February 15 2014

Visit with Mum. Wide awake when we got there.

Went into sensory room. Use magic carpet on a sheet over Helen. She Was not impressed with poppies or fish.  Water flowers and other flower scene really got her attention. She looked down at her legs.  She smiled through all of the flower scenes.  We watched a few episodes of family guy in the sensory room as well - she was looking and watching all the time. 

Back in her room I put the hairbrush in Helen's right hand and brushed her hair.  The fingers on her right hand twitched.  I asked her to move her hand and brush her hair several times.  She did it!!  Just her fingers twitching a little bit.  I put the toothbrush in her hand and up to her mouth.  She pulled faces, moved her head away and also moved her hand downwards.  She did this several times.  I am trying to encourage her to react to everyday movements, whether this is hair brushing or tooth brushing!

February 12 2014

My Dad visited today as well. 

Helen was just getting up when I got there so had a chat with Judi. She was looking at Helen's diary we have been writing. I told her that H has an appointment at SGH in 4 weeks. She was pleased to hear that. 

I also told her that I made contact with the research nurse at Cambridge to get Helen on the research programme there. Judi was very excited about that and wants to visit if Helen goes up there. She feels that H would real benefit from going there. She thinks that there is something in there just waiting to get out. She definitely feels that Helen responds, especially when asked to close her eyes. I emailed Evelyn to let her know that H had her appointment at SGH, just to keep her in the loop (and so Helen doesn't get called when she is due to have a cranioplasty). 

Helen smiled when Lesley and T were trying to change the hand towel in the bathroom - not sure whether it was the movement or the laughter that attracted her attention! She seemed to be listening to them intently!

Helen looked at Big Grampy when he came in. He and I were talking about treatment and he joked that an electric shock might get her going. There was an instant reaction and he got a look as if to say "not bloody likely!"

February 3 2014

Visit to see Helen in the hydro pool.  She has been in twice before but this was the first time I have seen her.  Got there and she was in her leopard print tankini.

The hoist to put patients in the pool is fascinating!  The "stretcher" part moves from shower room to poolside and is connected to the hoist mechanism. The stretcher is lowered into the pool and the patient is floated off.

Helen seems to really enjoy hydro.  They started with her on a floating board and doing some stretches then they put a floating head support on and took her into the middle of the pool.  Raymond the physio held Helen all the time with the other physio doing the fetching, carrying of equipment and making sure no water got near her trachy.  The physio are able to move her limbs in ways that cannot be done on land.  There is also a closeness that cannot be achieved anywhere else.  Helen was supported by one of the physios, had her knees on his legs and her arms around the top of his arms.  They were able to lift her head up and she could support it herself because the float doubles as a head support.  It was emotional to see her upright with her head up.

She was in the pool about 35 minutes.  She was showered and went back to her room and promptly fell asleep!!

Sunday 2 February 2014

February 2 2014

Visited by Big Grampy who said that she was very quiet when he got there but there was nothing going on to stimulate her.  She wouldn't raise her head but that changed when her nebuliser went on and suddenly she was more awake.  It was probably the noise!  She watched Big Bang with him.  She was moving her hands once or twice and did look at him before dropping off to sleep again.  She gave him a smile when he said he was going and kissed her goodbye.