Mon 4th Dec Blood on track!

Great news! Actually, I'm very excited...for the first time in 3 years Elise's immune system markers are indicating that her Lupus is starting to quieten.

For those fellows who need an explanation, well...complements are blood things that are consumed by the body when you are fighting something, like a bad infection.  The immune system is like the army and army reserves - the army reserves are her compliments. In Elise's case, she is fighting and killing her own cells, her DNA and attacking her cell mitochondria. When these complement markers are normal, then the army reserves aren't fighting. The fighting is more contained to just the basic army now. So it is VERY exciting to finally see the reserves in peace time. There is only one other blood marker that is yet to budge, she still is killing off DNA with her primary army. Hopefully that will soon show signs of calm. Well, that is my explanation anyway!

C3 and C4 (bold numbers) are finally in the normal range

Another first... Jesse had his first and tonight, his third sleep in his new nifty pod. He is happy, the room is bigger than he thought and it's clean (for now), and rather nice. I will take a pic soon and post it.

So now Jesse's old room is being stripped (a combined effort), plaster holes fixed and all the usual things done for painting prep. I am hoping to get it finished and furnished for Poppy's 7th birthday -1 Jan. It will make things sooo much easier... Elise will have room for a desk to study at and won't have to navigate or wheel over Poppy's toys all over the floor, let alone some private space and reduction in accidental wakings due to different bed times/wake times.

Mon 27 Nov Tall Ship sailing week.

Elise and I have just returned from 7 days of sailing on the Tenacious, a Barque, (three masted), tall ship.

Tenacious in the evening

We were part of the crew so pitched in with all the work. Hauling ropes, keeping logs of the weather and compass bearing, cleaning etc. Most of our time was spent on deck. It was a busy time.

Elise receiving instruction in steering at the helm

The weather was unseasonably warm with light wind, this made it a bit tricky as there was little wind to fill the sails some days. Added to that the generator registered a fault so the Captain decided not to exit the Bay for safety. Despite these little disappointments, the crew managed to have immense fun ... Elise won the murder game which lasted a couple of days. Being the youngest on the ship had it's advantages, she was often the centre of attention.

We sailed around Port Phillip Bay stopping on places like Portarlington and Portsea, visited smelly seals, explored the Quarantine station, observed two illegal fishing vessels, watched dolphins leap around the ship, watched the thundering skies, learnt how to steer the ship, spent hours on night watches chatting to new friends while recording weather details.

Having some assistance climbing the rigging

We both had a wonderful time with the permanent crew and the others, being so kind and helpful to Elise and the few other passengers with disabilities. Elise was quite overwhelmed with the kindness shown. Surprisingly, on this trip there were less disabled people than expected, although quite a few had hidden disabilities.

Those that were able climbed the mast and went out onto the Yards. Others were assisted by the permanent crew. We had safety lines on at all times when going aloft so felt very safe. The view was beautiful up the top and so worth the effort. It was certainly an experience that I will not forget in a hurry.

It would be quite interesting to do this trip again at a different place in completely different weather conditions - I imagine the experience would be dramatically different. One of the safety items was locking Elise's wheelchair down to the deck - necessary when the ship is on a steep angle when all sails are full. Our anti-nausea tablets were left untouched ... probably wouldn't have been the case if the wind was high. The sea was calm and beautiful.

Elise starting to be hauled up the mast

 

Touching down on the platform up very high.

Elise is just visible on the first platform

Starting my climb with the safety line at my side

Making my way out onto the Yard

I'm up on the second level of the mast

The sails are set

Getting ready to haul on rope to adjust the sails. Elise is behind a blind girl

Each rope has a strange name and a specific task. Confusing to newcomers

Chatting with fellow crew

Our captain explains setting sails on a small model ship

Thu 9 Nov. Beach and all terrain wheelchair test

The good folk from GMS Rehabilitation loaned us a Hippocampe wheelchair for a week.

First beach test ride.

The Hippocampe wheelchair is an "all terrain" chair that can enable Elise to get to places that her regular chair can't get to.
https://www.gmsrehab.com/product/hippocampe-beach-wheelchair/

We gave it a good go on sand, on rough National Park tracks and into the water. Driving right into the sea and floating out of the chair is a real advantage.

Soft sand is very difficult to move on with a regular chair. Note the wide tires.

Rough tracks can be accessed by one person pulling the rope and the other pushing.

Wheeling directly into water then floating away from the chair makes sea access easier.

Josh helped get the chair right up on the clifftop.

An emotional time for us all as we never thought Elise would see her beloved national park views again.

 

Their are a variety of "all terrain" chairs available so we have to do some testing to see what the "best fit" is for us.

Click on the link below to see video of the chair in action.
https://photos.app.goo.gl/EO70mYNDoBgjlfPJ2

Mon 23 Oct In the news

Elise's school organised a promotional item with News LTD. that appeared online Saturday.

Click the link for the full story.
http://www.heraldsun.com.au/leader/inner-south/young-teen-happy-to-return-to-heatherton-christian-college-which-made-its-ground-wheelchair-friendly/news-story/ba1210f335c2a2d9182e3cd812480cc2

That's the good news.
The bad news is that last week Elise unfortunately fell out of her wheelchair onto concrete and landed heavily on all fours and narrowly missing banging her head.
As her hand was very sore we got an x-ray that showed no breaks however the result was somewhat inconclusive.
Her left hand is the main problem and is still very sore. Another x-ray has been just ordered to further investigate the matter. The damaged hand effects everything as her hands are her only mode of movement. Painful to operate wheelchair, painful to transfer onto toilet and car seat etc. etc.
We hope that the healing be quick.

Some good news is that Elise was able to put shoes on both feet for the first time in three and a half months because of the nasty burn on her heel. New skin has formed right across the wound and soon no dressings will be necessary.

Beautiful flowers from the Canterbury Christadelphians

Sun 15 Oct Personal Trainer for swimming

Elise with her trainer Rob

Yesterday Elise was able to resume her swimming. It was suspended due to the nasty burn on her ankle around three months ago. Elise has always dearly loved swimming and was going to a pool until she was too ill to continue last year.

Swimming is now very much encouraged as a movement and exercise therapy for her now by the hospital. Aquastar Swim School Moorabbin did a wonderful job accommodating our needs and we ended up with having the pool to ourselves, Elise having her own instructor and Poppy having one to one tuition as well at the same time. Very impressive.

When we arrived at the pool the Manager came up to Elise and said, "welcome back". So nice of him. He has a positive, "can do" attitude which goes a long way in my books.

Elise and Poppy get a Personal Trainer each!

Elise got on superbly with her swimming but it was emotionally difficult - knowing what she could do last time she was in that pool and now seeing what had become of her. Elise is just so brave.
She was able to do around 17 laps and now one lap is tiring, still, she is just starting and will undoubtedly improve.

Click the link to see swimming in action.
https://photos.app.goo.gl/qkRANyZ4lAY0JYH12

Thu 12 Oct Personal Trainer trial

Today was the first day of the visit to our local boutique gymnasium...as it is apparently called, actually it is a very small gym run by 3 personal trainers which happens to be just down the road. Very convenient. Shannon, Jesse, Elise and Poppy all attended for a trial 45 min session with Curtis Palmer, a Gold winner para-olympian rugby player.

Monash hosp wants Elise to slowly transition to a schedule of gym with a personal trainer and other sports such as horse-riding/swimming etc as the hospital rehab slows down. Normally 12 months rehab is allocated for chronic illness/injury but Lupus TM is slower, usually 2 years. So Monash hosp aims to continue physio for approx one more year. With NDIS in view, it is time to start planning for funding help. Elise needs long-term intensive physical activity - the paralysis changes her muscle fibers so if she stops, the consequences are really really bad...joint and muscular deformity. Also, she needs to push everything in order to maximise functional return.

Pivotal Health and Fitness

Jesse working out with Elise

Video link of all the action
https://photos.app.goo.gl/rRDnepgFgnXYEKUn2

UTI's and Clonus, leg shaking and stiffness, are a continuing problem and is driving Elise mad.

Wed 11 Oct Turning 15

Final stylised publicity photograph of Jesse's "Pod"

Today Elise and Shannon went to the hospital and amongst other treatments had the burn on her foot dressed. The assessment was that it is now up to the stage of treating the burn as a normal wound and the special ointments and dressings are no longer needed. That means swimming and other activities can resume. Wonderful news indeed.

A huge amount of healing has occurred now - looks worse than it really is

Last week we had a few days holiday at our beach house on the Mornington Peninsula. Elise turned 15 years old while we were away - this was daunting as it was her first birthday in a wheelchair, potentially a very sad time. She was amazingly brave and really tried to enjoy herself...and succeeded.

We made it down onto the Blairgowrie front beach with the wheelchair one dreamy weather day and a kind man loaned us his plastic two-seat kayak. We had a paddle with Elise and Poppy, a highlight. Subsequently, Shannon has contacted the Blairgowrie Yacht Squadron, they run a Sailability program which includes access for wheelchair users...something to try out over the holidays for the small price of a gold coin donation (until you join the club then we mortgage the car ;-) They use small and very stable 303 yachts which apparently you can't flip, very reassuring. I rather fancy the idea of peacefully tacking on the calm waters of the bay.

Shannon and I managed to get her wheelchair to the clifftop on sunset - not something to repeat in her wheelchair as she needs something more off-road which we are looking into

The off-road wheels performed perfectly on the dirt and sand bush track of Blairgowrie.

Enjoying a special birthday lunch at Pelikan Société Hastings

Elise preparing strawberries for breakfast in the warm sun.

Braving mosquitoes on our birthday bush walk near the Mangrove swamps.

Video link of the boardwalk at Bittern including a GPS sound update proving that we're serious bush-walkers ;-)
https://photos.app.goo.gl/kT9TLpAewrkvMFJ63

NDIS planning is underway, Shannon is knee deep in paperwork, reports, quotes etc. NDIS opens in November and Elise has been accepted for early enrollment so we need to get everything ready. This is quite a big deal as House Modifications are needed, things like Vehicle mods (for when she can drive) need to be included, therapy costs, replacement wheelchairs, etc. It is a long list. It astounds me that we live in an amazing country than is so welfare focussed... "looking after the fatherless and widows," we are very blessed.

Slightly embarrassing link of birthday cake video below.
https://photos.app.goo.gl/fPZVppv5Rob9oSvQ2