Message Fifty Nine

As we left Liz today, she reminded me again to know how blessed we are.  "Be grateful.  Be comfortably tired, not stressed tired." Yes my dear, I can't argue with you.

We have had five of our favourite young people to stay.  Chloe and Maya, then Rebecca, Jonathan and Matthew.  Also with them, their parents, my Aunt Lis, and Theo and Patricia.  We played many games and drew pictures.  We played 'One Armed Charades'.  (Here it is important not to confuse Hitler with Superman.)  Aunt Lis did a convincing one armed impersonation of 'birth', and Theo did a curious impression of a one winged bat (for Batman).

On Friday Liz and Margaret were delighted to be present at the Ward raffle draw when their ticket won them first prize. (The giant teddy bear was fourth prize- phew!) The ward says thank you to those others of you who bought tickets - the raffle raised £300. We now have lots more fatty treats to pad out our New Year celebrations.

First Prize in Ward 2 Christmas Raffle!

Liz with her 'second cousins', Maya and Chloe, and her her 'first cousin once removed's'
wife Susanna.

Trip round the hospital 

Theo playing 'one armed charades'.

In the 'Day Room'.

Helpful 'Tea-towel'.

Message Fifty Eight

Happy Christmas to all our readers!

Liz was amazed when A (HCA) arrived yesterday with Liz's Elf uniform. She had asked if she could be 'Santa's little helper.'   Helen, the ward Sister, declared that she was now working for the National Elf Service. Liz was given a badge stating that she is 'Patient in Charge'.

We joined M, the Chaplain, in the hospital Chapel to celebrate the birth of Jesus.
Liz had attempted to stay up late with the night staff to see Christmas in, but was told later that the coffee on the ward is decaf.  She slept very well.  

Liz, Margaret and Auntie Ruth then toured Liz's old wards in to wish everyone a "Merry Christmas".  Margaret made a photographic collection of the various art works about the hospital.  Cousins Sarah and Emma then arrived from Oxford.  Finally Maria, a Mexican friend from Sheffield, came to see Liz.  She has been staying with a friend in Oadby.

Christmas Lunch in the Cafeteria

Liz and Sarah

Liz visiting ICU

Exhibit One

Exhibit Two - bedpans

Exhibit Three- on Liz's ward

Opening gifts today

Another set of sisters

An elfish look

What elfish feet!

Message Fifty Seven

If/when Liz writes her book, all the errors of my blog will be exposed.  Until then, just keep an open mind as you read.  Liz explained to me about the unconventional methods of her Physios and OTs when it comes to singing.  The singing also fits well with the speech therapy regime, and it is developing her vocal range.  (She is the best person to explain.)

Over the weekend Liz said she saw her left knee joint bend.  She said "hey up, what 'you doing?"  It's not a strong or certain movement yet, but it's the promise of things to come.  She also needs her left foot to 'dorsiflex' for her to be able to take concrete steps forward.  She is not yet able to use a banana-board to transfer from bed to chair, but that will come.

I had a go at the microstimulator on my hand.  It gives the sensation of 'holding on to an electric fence' in a field of cows, (a memory from my distant past.)  My hand also rose up in regal style.

Liz is feeling more comfortable in herself.  We have gone back to requesting that visitors book in with Joanna, especially over the holiday period.  She has physio again tomorrow at 1pm.

Demonstration of the use of a banana-board
(not by Liz...or me!)

Message Fifty Six

I left Liz before visiting time ended this evening having also asked six good friends not to visit even though they had made it to the ward door.  Liz was feeling a bit tired and unwell.  Her digestive system has been very uncomfortable, and she has not slept well.

I discussed things with the nurses.  They feel we should suggest that Liz has only three visitors at a time on the ward, as too many visitors can be tiring, and the staff are also concerned for the privacy of the other patients. The message is, if we do have a larger group occasionally, we should leave the bay, and go to a different location e.g. day room, canteen etc.

Having said that, Liz loved seeing her visitors today.  Ali and Neda came with Diana their young daughter.  They gave her a big box of chocolates, and later on, Liz, her aunt, cousin, Joanna and Margaret all went for a walk round the hospital handing out chocolates to her hospital friends, such as the OT's, Physios and BIU Nurses.

Elizabeth also had another use of the 'Pulpit Walking Frame'. Liz corrected Message Fifty Five saying she did not feel pain when she was trying to walk.  It was hard, but 'singing with the physios' was just because they know she likes singing.  She also enjoyed wearing N's elf hat, complete with large ears.  We trust Liz will sleep well tonight.

A Pulpit Walking Frame

Message Fifty Five

Yesterday, at the end of the day when we were all together, Elizabeth prayed for us all.  "Thank you God for teaching us your patience."  There is some work to be done in me.  We had just had one of those days that ended in me composing a written complaint.  Liz had an appointment with the Orthoptics  (eye muscles) Department in the Royal Infirmary.  This went well, with an agreement that Liz's sight difficulties are not going to be addressed with glasses or prisms.   Her left eye in particular, oscillates, but it is getting better. Then we had to wait for the ambulance to take Liz back to the other hospital. Despite assurances that it was coming, we had to wait over six hours.  If we had known this before, I would have found her a disabled friendly taxi.  It was pretty painful for Liz, but she did not complain once.  I mused that this is likely to be a small taste of the powerlessness that people with disabilities experience all the time.  The Head of Orthoptics came and visited Liz to apologise, though there was nothing she could have done.  We experienced a day in the life of a busy Orthoptics clinic, with lots of young children wearing eye patches and playing as they waited with their own Play Specialist, who also offered us pens and paper to pass the time.  The ambulance drivers, when they came, were friendly and did their job well.

Today Katie (Speech Therapy) agreed that Liz can drink normal water, and eat normal food.  Liz also moved into a normal wheelchair.  She demonstrated how she can now get around.  With only one arm working, it was really only moving around in a circle.   Liz informed us that earlier today she stood for a few seconds with her physios before she collapsed onto them.  She said it was quite painful holding herself up.  As a distraction from the pain, Liz and her Physios sang Disney songs together, including "Almost There" from The Princess and the Frog.  Liz told me to put that in the blog.  She is aware that it's not the complete truth, but it's a nice up beat song. She thought her grandmothers might like to hear it, so if you are interested, click on the title! 

Message Fifty Four

Elizabeth's ward has a large clock with the day and the date clearly displayed.  The days are ticking by.  Every day Liz continues to be positive and humorous.  I continue to reflect that this is pretty amazing.  Today, her therapists did not visit, but a group of doctors did.  Liz told me that they started badly by talking about her by her bed side.  Liz called out to them and said, "I'm here, you can talk to me."  She said they all apologised and explained that they were reading her notes trying desperately to get themselves up to date so they could have an intelligent conversation with her.  Liz asked them to think about whether she can come off the anti-epileptic medication which was prescribed in the first week in Sheffield.  Also she felt that she did not need the neurological painkillers.  The only pain she experiences is having to go to the toilet.  It's a right faff, requiring being hoisted in and out of bed.  Sometimes it is also physically painful, but she's coping.  The simple functions of life are basic but critical.  Liz told me put it in the blog. It's real.

Liz also discussed with her Dietitian whether she can come off the PEG feed.  They agreed that she doesn't need any food through the PEG as she is eating well.  However, it will stay for now because once it's out, that's it, it's gone.

Elizabeth's visitors continue to do her proud.  Her school friends visit regularly.  Vaidehee came all the way from Norwich.  Elizabeth's great aunt and uncles travelled miles to see her this week, from Salisbury and from Najac in France.   Kathy from our church visited (her mother was once a nurse at The General).   Roger and Helen came from York today.  Our friends the Carrs joined Liz in the gym.  We have been trying to obey the 'numbers' rule by using other rooms away from the ward including 'The Retreat'. This feels a bit like a railway station waiting room because it is right next to an automated voice by the front door telling visitors to "wash your hands and protect our patients".

Message Fifty Three

There was a bit of a kerfuffle on Monday.  Should Elizabeth have been allowed to eat rice?  Liz was philosophical.  "I will soon, so I don't mind waiting."  But it was a confusion.  After some debate with the Speech Therapist, it was agreed she can eat rice.  So now she can take advantage of perhaps one of the most internationally varied hospital diets outside of London.  Caribbean is not on the soft food menu so she could use it to celebrate when she passes onto a normal diet. Liz still has the PEG, but its days are numbered.  Apparently the mix she is now receiving through it is largely water.

We are all aware that changes are occurring very slowly in Elizabeth's left side.  Elizabeth continues to be positive, and is really encouraged by her many visitors from every walk of life.  Two of her old 6th form teachers visited yesterday which was really special.  Liz said I am now 'teacher,s pet' on the ward.  We discussed the graphic  novel 'Blankets' Susanna (old school friend) gave her which she has now finished. 

We are planning Christmas visits  at the moment with the promise of having the ward virtually to ourselves. Several patients will be going home for the holiday. We are looking forward to the Christmas Elf costume that has been ordered so that Elizabeth can be 'Santa's little helper'!

Meanwhile, Joanna is in Durham with her cousin for a few days, enjoying the end of term festivities at the university.