Sun 29 Jan 2017

Today we took Elise on her first outing. It was to Chadstone shopping centre. Getting the mechanics done was a challenge for first timers, transferring from wheelchair to car, disassembling the wheelchair and fitting in the car, finding suitable car parks and ramps, etc. The good news is that all these things worked out well in the end and the trip was a huge success.

Two videos of Elise cruising around Chadstone.
https://goo.gl/photos/nm3C7tqKNmzHK9Kb8


A message from Elise.
https://goo.gl/photos/QWqyHQtqeDVnfJgD9

Medically Elise is on track. Today we were told that her inflammatory markers were really down (eg. ESR 12, it was 120+ on admission) and other important blood markers are looking good, so the chemo is doing it's job. Everything is heading in the right direction, including her newfound sensitivity on her tummy (she can feel me tickling her!)...an indication of some spinal healing around the T10 level - this includes remyelination, re-programming, rewiring and a reduction in inflammation. Obviously, sensation recovery goes from the top towards the toes as signals need to get to the brain. So hopefully, some hip recovery will be occur in the coming months. All in God's trustworthy hands.

Sat 28 Jan 2017

Testing out her new wheels

Today Elise gave me a demo of her new machine, a Tilite Zero wheelchair, not a perfect fit (a bit big, notice her feet swinging :-) but sooooo much better than the standard hospital one. I gave it a try and was surprised how vulnerable it made you feel to tipping over backwards, the centre of gravity being much closer to the body - the very thing needed to enable efficient self-propulsion. Wheelchair driving is a real art and it will take her quite a while to become proficient at it...hence, anti-tipping wheels on for a while. Well, we have this one for a week apparently, which isn't very long.

Her trunk core strength has improved significantly over the last few days. The immediate benefits are  that she is just beginning to be able to turn over in bed, essential for bedsore prevention, and general mobility including transfers from bed to wheelchair.

Fri 27 Jan 2017

Today Elise received a new super wheelchair. She's very happy as it's lightweight and very maneuverable. On her maiden voyage, she was able to travel more than 3 times the distance compared to her previous hired wheelchair. It is on loan for one week only and we understand that a more permanent arrangement must be made after that... so looking towards organising a custom made wheelchair.

Wed 25 Jan 2017

Today Elise made a trial transfer from her wheelchair to our car. This is a practice with view of having a little outing next week. The transfer went well as her upper body strength and technique are both improving. Elise is greatly looking forward to having a look at the big wide world for the first time in six weeks.

Mon 23 Jan 2017

Elise was fitted for AFO (Ankle Foot Orthosis) today. They cost the hospital $1400. In two weeks hopefully she'll receive her custom ankle brace - helpful for relearning to stand upright with assistance and keep her ankle tendons flexible.

She also had an x-ray of her tummy in the afternoon to check functionality.

Today they told her she needed to eat more as she is still losing weight! The rehab and normal activities like sitting take everything out of her. Well, she is eating like a horse so we have strict instructions to increase protein and fats - not easy on a vegetarian and dairy free diet :-(  How many beans can a kid eat? She has lots of nuts, eggs etc which help. Unfortunately sugar isn't included.

Starlight foundation bowled in and transformed Elise into a cat. It lightened the mood :-)

Sat 21 Jan 2017

Yes, she has been a bit nauseous post chemo but she is going well!

It has been a busy week in hospital - they are keeping us on our toes. This week we had our Tiguan photographed and measured (after a good clean and vac the night before!) - this is with view of planning our first outing. It is quite tricky transferring from the wheelchair into a SUV (it is too high) and then we have the logistics of fitting a hire wheelchair into a smallish boot. Nothing insurmountable.

Rehab has arranged, after a number of phone calls, a better wheelchair - it is to be couriered from Royal Children's (they have smaller wheelchairs there ;-) which is made for all terrian, to match our Tiguan. Actually her current wheelchair is an adult one and really is inadequate as the wheel is too far back and so is difficult for her to self-propel. It also weighs about 18kg.

If required in the future, a tailor-built wheelchair will be organised.

So it has been a full week - lots of arm and core-strength exercises, chemo and planning for our first real trip - Elise would like to go home and bake a cake! She is really starting to miss home.

Thur 19 Jan 2017

Chemo infusion is finally over. She is well, feeling like a pin cushion after multiple failed attempts of getting a good vein, but is ok! Doc decided today for another high steroid pulse of 250mg prednisolone for tomorrow so she will be attached to the IV drip for another day. Not the greatest as she can't move her hand - if she does an alarm goes off :-(

Despite all this, we managed an aromatherapy leg massage and stretches so we (Elise and mum) smelt wonderful! Thanks to those people who bought massage creams and oils - they have been great and much used.

Monash Hosp. has been wonderful - the specialists have been in significant contact with oversea's centres examining her case (as it is so severe) to ensure the best treatment possible. We are very thankful and blessed.