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