Wed 29 Mar 2017 A Pleasant Surprise

During our evening stretching and exercises I asked Elise to try moving her legs as I often have before. This time the result was different because she moved them!

...with a pleased look...

I got her to move them again just to make sure and she did it. The third time I made video.

While Elise had moved before, moving against gravity was a new thing.

Below is a link of the event.
https://goo.gl/photos/QCSnDbjcLtxWDdH77

Sun 26 Mar 2017 a special kindness

Today Elsie had a visit from Emma Booth.
Emma Booth is an Australian Equestrian Paralympian who competes in Dressage. She is part of an organisation called Ride with no Limits.

Emma Booth

http://www.ridewithnolimits.com/about-emma/

Elise, Shannon and myself were with Emma for quite a while talking over the situation the she found herself in and getting helpful ideas for Elise's future.

Emma is super bright and happy and inspired us with confidence for the difficult times that we will all face moving forward.
Thanks to Emma for going out of her way and helping others by putting in the effort  herself.

PS. Emma gave us a demo of how she gets into her car and then packs her wheelchair all in next to no time. An Olympic effort in itself.

Fri 24 Mar 2017 Standing and Brownies

Today Elise enjoyed her regular rehab work as always. Activities included standing, throwing and later a bit of cooking.

Standing practice to strengthen upper body

Exercising made fun

  Click link for video
https://goo.gl/photos/YziXe5csA6f5UeWi7

All activities are aimed at strengthening and getting ready for "real world" tasks.

Click link for video
https://goo.gl/photos/GKnFoy6iA3yeBqag9

Sun 19 Mar 2017 Sleepover again

Much to everyone's relief, Elise is going well after the last higher chemo dose, only waves of nausea here and there. It seems the extra anti-nausea medication has done the trick, although there has been some other unpleasant side-effects to deal with. Only two more chemo sessions to go, next one in four weeks.

Back home again for the Saturday night sleepover and Elise is already helping out with little sister - some normality is precious.

Hairdressing for a little sister.

After the sleepover we arrive back at the hospital room and see that the goal that she set down some time ago is still the same.

*To walk again. *To go home.

Fri 17 Mar 2017 Wheelchair practice time

The good news is that Elise has had very little nausea so far, maybe due to a different anti-nausea drug.
The other good news is that she was feeling so well that the Physio was able to give her a workout in a sports wheelchair which Elise just loved and begged for "just one more go" a number of times.
Elise had a delighted smile on her face after the challenges that were given. Doing some of her beloved sport was a tremendous boost to morale.

Shooting for goal

"...and she score's"

Click the link below for videos of the workout.

https://goo.gl/photos/19WoPZDmjZQz7tL38

Wed 15 Mar 2017 Fourth Chemo day

Cyclophosphamide drip

1000mg of Cyclophosphamide and then 250mg methylprednisolone.
It all started smoothly however there was too much blood in the urine so a very high degree of hydration was needed. Unfortunately the line in her hand failed and the hand all swelled. Another line was needed and getting it in proved to be a painful challenge.
No nausea was experienced.

Tue 14 Mar 2017 Melanie Adams visit

Elise has just had a visit from Melanie Adams, she is a disabled basketball player for Basketball Australia. Her player profile says, "This outstanding young player has burst onto the wheelchair basketball scene over the last 12 months. Since starting in the sport Mel has already shown enormous promise with her recent inclusion in the Gliders training squad for the 2014 World Championships."

There is nothing like having a bubbly and down to earth person in a wheelchair, talk about the good's and bad's of life. She was realistic and very open - hopefully she can meet with Elise again and give her some peer support. She also emphasised to Elise the huge importance of getting back into sport - for simple things like really learning how to maneuver a wheelchair to personal challenges and social support ... she was very honest about how tough it will be leaving hospital and that Elise will need every support to get through.

Mel works part-time doing public motivational speaking and showing off her basketball skills to schools.

Mel Adams

Sat 11 Mar 2017 Nature lovers

Today we had a trip to the Royal Botanic Gardens at Cranbourne and enjoyed the modern garden layout and wonderful plants.

Poppy got to dance in the water and Elise benefited from the easily accessible paths and exhibits.

Necessary refreshment

Ready to go after a picnic lunch

Playtime

Wed 8 Mar 2017 always exercising

The Rehab team are always trying different ways of exercise and it's boxing today.

Giving Spinal Cord Injury a TKO

Link below of Elise "floating like a butterfly and stinging like a bee"

https://goo.gl/photos/Etn5vDR8vgWpHW7Q8

Wed 8 Mar 2017 a review after three months

Just before the hospital she was in pain and nauseated constantly.

In ICU and sleeping mostly

Flopped in a chair and all plumbed in.

Leaning on pillow because of no core strength

First meal at home

Having a joke with Mum and Poppy

Last weekend at Garden World

No loss of appetite here

Enjoying the setting sun and a colourful wall.

Mon 6 Mar 2017 Letting go

Letting go

Some of you may know at home we have a glass bowl and in this bowl are lots of Bible quotes. We sometimes pick one out at random...sometimes when we're thoughtful or struggling...God seems to know just what to say when we really need it.

Today I was in my lounge room thinking and praying and in my meandering thoughts I was thinking about stages of grief and letting go in life. For me, in my twenties letting go of job aspirations and what I thought serving God looked like...stages of grief, letting go and accepting a different life, going where I didn't want to go.

For Elise, there will be stages of grief, some I'll share and others I can't even understand...a private world of sorrow. I put my hand into the bowl and plucked out a quote. How will God speak this time?

"Remain faithful even when facing death, and I will give you the crown of life. Rev 2:10"

Yes, it is death. Death of her hopes and dreams. Carving out a new life will be tough, filled with frequent hospital visits, endless blood tests, medications, daily exercises to reduce spasticity, being dressed, showered etc etc. So we will face this death together - God, my family and all others who care. God will build Elise a new house, a stronger one that will hold in any storm.

So what does grief look like - perhaps the loss of anonymity, the looks or the averted eyes... "Why is that girl in a wheelchair? Should I say anything? Just pretend everything is normal when it is not?" There is no escape, you don't "belong" in a wheelchair. Maybe it's that label...Disabled, not that, oh no, please not a disabled parking card, I am not disabled! Yes, that battle has been and gone. Or perhaps it's clothing... Jeans? Too tight, pockets at the back, no ... that won't work in a wheelchair, what about pressure sores. Perhaps we can look at loose clothing, maybe elastic waists. But not too loose,  it will get caught in the wheels. Maybe it the loss of privacy, dignity, hair, the dream of being a normal girl going to school or just running down those stairs. Yes, there will be many, many stages.

I know that this sounds all poetic, even corny to some - but letting go is hard... and without God I think I might shut the world out. It is hard, I'm not going to pretend it's all easy and everything is fine. I know it will be OK, He is in control, but Paul was shipwrecked three times. No, it is not easy...there is much suffering and stages of grief to come.

I will wait for my crown of life.

Shannon

Fri 3 Mar 2017 Kneeling practice

Today Elise and the Rehab girls did more balance work.
The link below shows her kneeling. It requires considerable work and some support but attempting this, a short time ago was impossible.

https://goo.gl/photos/ZC5staaQaYvmMhAs5

Success!

Thu 2 Mar 2017 Pizza time and bike exercise

For dinner tonight Elise and I ate freshly made pizza. Not ordinary  pizza but pizza made by Elise with help from Rita from Occupational Health. She put herself out in getting the ingredients and helping Elise make it happen. Thanks Rita!

Four were made, now two left

In case you are wondering... dairy free and vegetarian!

Today Elise tried for the second time to pedal a lying down exercise bike (on Tuesday she had her first go and was able to pedal very slowly by herself). Unfortunately, she was a bit tired and gave up after a few goes.

In action

Video link of learning to pedal
https://goo.gl/photos/7CyCQzgkHU9Hn3pd9

On the medical side, apparently Elise hasn't responded as well as they hoped to the chemo, so they will be significantly increasing the next dose to 1gm. They are aiming to get the white blood cells to 3-4 range, which is the point needed to ensure the Lupus is suppressed. Hopefully the increased chemo will work. Also, of note another decrease in steroids.... prednisolone down from 25mg to 22mg per day (they are slowing the pace of dropping now).