Mon 19 Jun 2017 Party time

A fun pose from some of the group

The chocolate game was a huge hit, as was the homemade food contributions from the rehab team. Elise made a choc-orange cake and we put together some sushi before the party. It was my first time making sushi  - actually I was surprised how easy it was to make, it will be on the Richards' menu here and there from now on. The Rheumatology team arrived a bit late so aren't in the picture and the nurse's decided to have party on discharge day, Wednesday. Note Stuart and boss Barry talking about the merits and disadvantages of a female dominated workplace at the back.

All spelled out - Wish you all the best Elise

Some of the team - Sabine (pink flower in hair) paediatritian, Fiona (beside her) dietitian, Kate (beside Fiona) therapy artist, allied health assistant (blue and pink top), Katrina (pink top) teacher, Amy (white plain top) music therapist, Tanya (one sided haircut) senior physio, Barry boss of rehab, Liz (white top and light hair) social worker, Amanda (moroon top) OT, Mahek (squatting down, black hair) physio, Mel (glasses squatting) and Jodi (beside her) allied health assistants, Katherine (squatting in grey and black top) physio, social worker student (in front of Barry).

Stuart, still recovering from his opp, had his first part-day back at work (with the party sandwiched in-between). He can now stand upright which I am very thankful for, on the mend.

Click below for video links of games
https://goo.gl/photos/bBsRE2ZQcoPUBMvx9

https://goo.gl/photos/SGNoAxEEA9saGLj6A

A silly game

More sensible now

Thu 15 Jun 2017 Six months today

Today marks time of 6 months in hospital. I can't believe I have spent nearly 5 months worth of days in a stark old beige ward and a month or so in the bright new white "hotel".

Plans are continuing for the discharge party on Monday, actual discharge is on Wednesday. Head departments are being told to cook, that will be interesting! Elise has requested the chocolate game....for those who don't know...pick a dice number, sit in a circle and roll...the person who gets the number starts dressing up (hospital gloves, gown, hat etc then commences eating a chocolate block with a knife and fork) all before someone else lands the correct number. Elise can't wait to watch the senior doctors getting into it!

Activities over the last few days...

Saturday
Wheelchair skills program at Royal Talbot Rehab Centre with Richard Colman. I looked him up...an impressive chap, elite athlete and advocate... OAM and multi-medal winner. Best of all he was a great guy, can-do attitude and all smiles.

Wheeling around the cones with one arm only

Unfortunately Elise's new machine hasn't arrived yet, so Richard kindly swapped...Elise loved his super sporty and tiny wheelchair. Something we will look at getting her for sport in the future. Richard was tough... "mono's"...trying to get into her wheelchair from the ground...learning to fall and recover etc.

It was hard and Elise really tried, and failed. Many people never master these skills but we'll keep trying.

Richard's legs are very short, Elise had a bit of trouble fitting her's on!

See the link below for Elise practicing at the wheelchair skills session.
https://goo.gl/photos/WKakRZYGLPmsMgRY9

Meanwhile Stuart languished at home after having an groin hernia opp on Monday - probably too much lifting of Elise and wheelchairs. He is still hobbling around and occasionally moaning. I joke that I now have two invalids to look after! Well, a partial joke ;-)

Sunday afternoon
A bit odd to be shopping on Sunday as I usually avoid it. We went to Horseland and purchased the necessary gear. Will post a pic when she is all dressed up.

Tuesday
Cooking with Rita the OT - Peanut Butter and Chilli noodles. Rita forgot several ingredients but it still turned out edible. We had it for lunch. Looked a bit too much like brains for me.

Peanut butter and chilli noodles

Wednesday
Demo of a simple standing frame, necessary to reduce the high risk of osteoporosis of the legs. Elise will need to stand for a minimum of 30 min per day, ideally 1-2 hrs. Maybe incorporate into homework time? Maybe while doing upper body stretches?  Unfortunately using one's arms to get around means shoulder reconstructions in the future unless Elise does a daily exercise routine. Another thing to fit in. Physio's Tanya and Katherine are going to design a 7-day exercise program. I saw the suggested timetable on Tuesday...GULP.

Physio's are hoping Elise will improve enough over the next 6 months to be able to discard the frame and stand against a bench instead. Hopefully.

A simple standing frame

Elise trying out a standing frame after rejecting the previous one (Rabbit stander).
https://goo.gl/photos/vNRtreiU5htU7DAg8

Thursday
Second school visit in the morning - period 1 and 2. It was fundraising day for Yr 10 Mission Trip so the kids had to dress up with something starting with P or J - Passion for Jesus. Elise, on Stuart's suggestion went as a Patient. The nurses got a kick out of picking surgery gowns, booties, hats and bandages out for her. Despite the clothes, Elise was rather stressed to say the least. The morning was a bit tense with her inner fears bubbling over. She was fine after a few minutes :-) I spent today being a taxi - to school, grocery shopping, home, school, hospital, school then home again. I fear this is going to be a familiar pattern for the next few months - we have to return to the hospital 3 times per week for physio and clinic.

Tue 6 Jun 2017 Horsing around

Another crisp winter day in Harkaway - Elise's third horse riding experience.

With additional Baclofen in the morning to try and counter the post-horse leg jitters and spasms (they went nuts after last time for hours after), we braved the cold to go horse riding. Forgot the school shoes - it is really tricky having one wardrobe at hospital and another at home...now where did I leave it? Hospital, wash or home? The horse trainer, Julia fortunately had a stock pair to loan so all was not lost. Elise got on famously. She really worked on sitting upright for the whole 40 minutes which is exhausting, especially as she kept on slipping off the saddle. Julia worked out that a part of the problem was her smooth pants. Homework for the next week - to buy breeches with silicon grip on the thighs. Time to buy zip-up boots and helmet as well. Basics for the moment, Julia said later it will be $600 for the proper horse boots! I hope much later. Ouch!!

Elise worked on turning the horse, doing figure eights and trying to do small trots without sliding off.

Sitting much more upright this time - but it was exhausting

The physio team have a bit of fun with Elise - exercises can be a bit boring. I wonder how much time they spend looking for just the right picture for Elise's timetable....

This week's horse pic

Last fortnight's pic - note the typically busy day

It is a 3 hour round trip for horse riding, fortunately the scenery is beautiful with all the tall trees.

The starlight people visited Elise and taught her to make balloon animals - well, started to. Lots of fun.

The three little bears... Elise was very proud of the brown one (starlight made the other two).

Sat 3 Jun 2017 Beginning the next phase

Things are winding down at the hospital, Elise's busy schedule is easing and discussions around discharge have started.

To mark the grand finale, the hospital is having a party! 🎉
To make it extra special... invited members are cooking... in the spirit of Elise's cooking at the hospital, some staff are already sharing ideas. Discussions on dairy free choc brownies, veg pastries and favourite cake flavours. Monash Children's Hosp doesn't have many long-term stayers so a party is in order, to be held in the new Starlight room. Rehab, Rheumatology and ward staff will be the main partygoers - actually it will be a bit of fun for doctors out of their busy, busy days (yes, we see doctors often early in the morning then bump into them at 9pm at night still working ...and many of them have young children at home). Party to be held in a couple of weeks.

This week's creation - avocado and cucumber sushi. It appears that I will never have to buy sushi again :-)

It is nearly time to leave but it is also time to start the next phase of drug treatment. Considering we have been working up to introducing this medicine for months...the hospital has relaxed a bit and forgot to organise it! They would have remembered eventually ;-) but as I am on constant alert - it was sorted....Elise was woken at 12am to have the first dose! Doctor scripts and pharmacy took a little longer than expected :-(

Taking this drug is a bit of a nuisance from a practical point of view. Take it at this time, don't take it with this, have it exactly 12hrs apart etc etc

Mychophenolate warnings

There are warnings stuck all over the packaging. Now we are re-giggling her other med's as some conflict. I think the government must has been extra impressed with this drug - we took the script to the hospital pharmacy so we have our supply at home and the price....

300 tablets for $6.20

I think the market value is about $1/tablet. Stuart double-checked, yes it was $6.20. Wow! It helps to have a Health Care Card for Elise, but that is very cheap...it is an expensive drug but obviously considered essential for transplant organ survivors.

Below is an example of a recent hospital timetable - it is much quieter than previous. Note though, much of what Elise does isn't on this... last week we fitted in a kidney scan, an opthamology appointment, uroanalysis assessment and many impromptu specialist discussions.

Sat 3 Jun 2017 First school visit and exercise

Ready for a visit

Yesterday was a day that has been long anticipated. The school social trip. I took Elise from the hospital to home, to get ready for a lunch time start. To say that Elise was nervous was an understatement, she was extremely apprehensive but as with many things hanging over our heads, the bad bits often never materialise.

All went well, Elise was relaxed and all smiles by the end of the school day. She celebrated her first trip back by volunteering to do a maths test - clearly not like her dad. Mrs Gupta, her year supervisor and maths teacher was lovely - organising a small girls gathering in her office (in front of the heater of course) for a quieter visit.

Earlier in the day Elise showed off her leg control skills to the Physio girls. She crawled across the floor of her hospital room under her own steam! Considering there was zero movement in the legs some months ago this represented a huge advance. Note that she is only able to move her legs when there is low gravity (crawling, legs hanging etc) as there is just too little signal getting through to go against the power of our planet.

click for video link https://goo.gl/photos/ovcYE27u2EzBGYBK8