Fri 26 May 2017 Standing Frame and Risotto

Friday was a typically busy hospital day but some fun exercises were included too.

Part of a session of 50

While Elise was in her standing frame the Physio team gives her tasks that really get the muscles going and the heart racing. We all noticed how much she had improved in her ability to balance and bend while being stood up. Very different from when Elise was propped up and hanging on for dear life and wishing to be returned to sitting. After a good exercise workout and a rest we went to the old Occupational Health Kitchen and got stuck into making Risotto.  Lots for fun is the main ingredient in Risotto, which I think makes it taste better.

Into the pot

                                               

The frame had just been adjusted for her size

Click below for a video link of cooking.
https://goo.gl/photos/Vd1BcKTJysHWjcBN9

Link below of ball workout and the end of the second session of 50
https://goo.gl/photos/JCwb8uEtvry7LugQA

Just to give on indication of how Elise has improved in movement. After she had been in hospital about 2 weeks, around Christmas time, Elise took half an hour to write one sentence which included a sleep in the middle of it. Now her writing is very good indeed but not quite as it was before Transverse Myelitis.

Mon 22 May 2017 Second horse riding trip

A beautiful sunny Autumn day of 20 degrees, there couldn't be a better day to go horse riding. A winding drive through the tall gums of Narre Warren and Harkaway...dreamy.

Balmoral Equestian Centre is near the top of the list when it comes to horse riding in Victoria, especially para equestrian. So far, nearly everyone I've bumped into there is a winner or is their way to being one! Surprisingly, the place doesn't look anything special....but then, in the stables...the horses...well, they remind me of the Arabian beasts racing over dunes that that melt women's hearts and make men want to be brave. Unfortunately they often come from Holland at around $100k each. We're aiming a little lower.

Today was a real lesson, learning different hand positions, different ways to hold the reins, different quirks of Elise's legs...one ankle kept on twitching and pushing her off the saddle. Elise was in her element. She loves physical challenges.

After the lesson, about 40 or so minutes, (Julia the horse lady is very generous with time, was meant to be 30 min and all up it look an hour.), we decided to take a longer route home. It was just too lovely to go back. Only five minutes away on Duffys Rd, is a place that has memories. We drove up there, having a good old chat about my first years of life spent in a small one room plus a tiny laundry/entrance bungalow. On a few acres of beautiful bushland with two dams we romped around (all 4 then 5 kids) and squished into a bungalow...well do I remember the 3 level bunk my Dad built. Happy times.

Medically speaking, Elise's eye is much better with almost hourly eye drops and ointments. Very pleased she is in the hospital at the moment as you need nearly a militant schedule to keep up with all her medications. She is one superb pill popper.

I've been busy in the background (as usually all mum's are). Meetings with architects, builders, principals, weekly OT/social worker meetings etc etc. Today in the space of half an hour before leaving for horse riding, I managed to catch up with Elise's doctor, the pharmacist, the hospital new principal and teacher and the Rehab head specialist. I am now very tired, getting my words mixed up, it's only 8:45pm and I'm ready for bed.

Video link below
https://goo.gl/photos/83YS22yXxSPAaXm8A
 

Sun 21 May 2017 A rough weekend

Miserable for a while

Elise was feeling well on Friday so she came home at school pickup time to stay the 2 nights - as per request from rehab, a gradual home transition.

Well, in hindsite, it was a bad idea after chemo.

After hints of trouble on Friday night, Elise deteriorated on Saturday, complaining of a sore eye. It was swelling up fast.

By the evening we were calling the hospital (one eye was painful, swollen and had closed up). Typically she perked up, she really really didn't want to go back and we held off till Sunday morning to return to hospital. To add to it all we were having trouble in the toilet department as well, so we had no choice.

The hospital ward was waiting for us, snapped into action with eye specialists etc. Apparently, the mix of chemo, steriods and Lupus is a recipe for opportunistic infection. We new this but with regular antibiotics to prevent this (usually pneumonia is the culprit), we weren't expecting anything.

So now Elise is on everything in case - antibiotics, anti-virals etc...no chances taken. She has an ulcer like sore under the eyelid and a damaged cornea, suspected herpes simplex? Unusual, so they being careful. If something spreads, her immune system can't fight it.

That sounds all melodramatic! But then, a high percentage of people with Lupus and chemo used to end up dead due to secondary pneumonia. Hence, the caution.

Amazingly, they said it is OK to go horse riding tomorrow - finally organised another session. Something exciting to look forward to!

Thur 18 May 2017 Last chemo over.

Elise was feeling good in herself

Yesterday Elise was given the last of the six treatments of Cyclophosphamide. She was cheerful and positive throughout and had only a minor headache which was halted with Paracetamol.

First thing today I got a two word text message from her, "all good".
Earlier in the week the doctor told us her blood readings were good, indicating that the treatments were doing their job. Blood pressure still high. 

It also marks the time of 5 months that she has been in hospital. How time flies when you are not the one that is hospitalised. The time was brought to my attention last night as one of the nurses attending Elise was very pregnant. Elise told me that she was the first nurse (that Elise could remember), to look after her. At that early time there were no signs of any pregnancy at all!

Elise and all her visitors are delighted with the new hospital. All the new, fresh and white surfaces are a delight to behold and no doubt have an effect of making everyone as well as they possibly can.

Elise gives a short message in the link below.
https://goo.gl/photos/UcdHoYqaNjXsdxU1A

To make things extra good, we were able to book in another horse riding lesson on Monday (and Monday fortnight). Also planning to pop down the coast overnight on Saturday for a change of scene (she really has had enough of being in hospital!)

Thur 11th May 2017 Chemo postponed

Hello everyone!

Chemo has been postponed - Elise had an UTI infection and high blood pressure so it has been postponed till next Wednesday. We were hoping to tick off the last chemo session but it was not to be.

But she has been busy...

Monday - cooking a vegetarian stirfry with Rita the OT, who can't cook so Elise did all the preparing and I did the cooking. The OT kitchen is rudimentary so it was very basic on an old electric stove that didn't have enough heat et cetera. In case you're wondering, this exercise is for Elise to work on upper body control and strength for everyday tasks. This ended up being our lunch and next day's dinner.

Yum - veg stirfry

Tuesday - meeting with social worker and OT to go over plans for school re-entry, school funding, home mod's and return to home, all a work in progress. More physio x 2 for Elise.

Wednesday - Poppy was a bit sick with tummy pains so we came in late to the hospital and watched the recent Smurf's movie in the new HOYTS theatre. It was Poppy's first time being in a cinema, albeit a small one. It was a great film for littlies.

Thursday - mum...Pauline looked after Elise today. I spent the day investigating home equip for Elise. Elise was very pleased she did 7 "walks" today during physio...an increase from 5 from last week. Mum and Elise have been busy creating origami objects.

We are still waiting to organise more horse-riding lessons.