26th Dec 2017 Second Christmas Message

A very excited smile - a new discovery

As nerves heal and inflammation reduces, seemingly out of the blue discoveries are made... like finding an old lolly in ones's pocket. Elise just discovered that she can move one leg up and down against gravity. The other leg doesn't seem to want to follow - this is very positional... has to have one leg up to reduce the effort required etc but all the same, another hint of better things to come.

It is so positionally specific, that she can't lift her leg at all while sitting in her chair, it is only on her back. But, all the same... it is a new thing to chalk up at the end of 2017.

Here is a video of her achievement...
https://photos.app.goo.gl/wLwRUn3FioZRmHcN2

Last night, when we were all just about to drift off after pudding and "partridges",  Stuart suggested it would be a good idea for Elise to do another Christmas message. Elise was not very keen, in fact she was a little negative. Despite this, she braved the camera late at night to cheer and uplift her loyal followers, after all her initials are ER.

2017 Christmas message

Christmas message link...
https://photos.app.goo.gl/sHK6rtSUHkq993sI3

Sat 23 Dec 2017 A month of renovations and good beginnings

Stu is making supper, one of his favourite things - Christmas pudding and ice-cream (usually custard) ... note, before the 25th! When will it end!!

It has been a good month. Crazy, but good. Aside from my mum having a car accident (she is OK but still recovering) and having lung problems due to too much sanding without a mask...I won't do that again... things are going well at the Richards household.

Elise has just finished a 6 day, over 2 weeks, hospital intensive - basically Mon, Wed and Fri x 2, hospital physio sessions twice a day. For the mathematically challenged, that is 12 physio sessions.

Elise trying out the Gutter Frame for the first time

While in physio, Elise spied someone using the Gutter Frame and asked if she could give it a go. As the physio's are upbeat, they immediately organised Elise to have a try. Well, it was a winner (in Stuart's terms ;-) After four times up and down the room, she was able to put most weight through her legs and deemed the hoist unnecessary.  Tanja the physio was very excited! We hope that one day she may be able to do a step or two with a frame independently ... may not be very exciting but simple things like getting into a shower or reaching that top would be soooo much easier. Just being vertical for a short time is rather exhilarating. Well, something to aim for in the many months and years to come... it is very slow progress.

A little video of her first go:
https://photos.app.goo.gl/PdI4MMNoUZ6PvUxF2

We are looking at a 5 day hospital inpatient stay Jan 8th, for twice daily physio sessions. The aim is to accelerate improvement in short bursts during the holidays, rather than losing school time visiting the hospital for physio. Add to physio, she managed to fit in 2 horse riding lessons, swimming and gym. It was probably a bit much as we noticed hot sweats during the night, which is a bad indicator of Lupus activity - so we cancelled her second gym session and fortunately swimming has finished for the term. Note: too much physical activity triggers Lupus.

During this time of drop offs and pick ups from hospital, I madly sanded and painted. It is quite a Houdini feat racing home, changing into my painting gear, opening tins etc, closing tins and wrapping rollers, changing and cleaning up, racing to hospital for pickup...then doing it all again. One day I had 3 lots of changes ;-(  There is an element of feeling I am masquerading as something I am not, one minute I am a spotted mess wearing a shower cap (the easiest way to keep gunk out of my hair) and then in 5 minutes a presentable civilian then to transform again when back in my abode.

Jesse's soccer ball hole, note screw pulling the plaster back into place for repair. First time I have ever done this.

So, Jesse's old room is no-longer. Transformed into a princess' wonder (not quite finished yet).

Patches and sanding completed, first coats on. Stu's photography lights are handy.

Poppy painting her wardrobe internals...a safe option!

Poppy's new room

So Jesse is now in his new room too...

Who wouldn't be happy with this?

Since the girls have their own rooms, the stress levels have noticeably plummeted. It has only been a few days and already there is less frustration and less crying ... from Poppy (or maybe it was me?) Toys on floor and wheelchairs don't mix, nor do 6 year old and 15 year old bedtimes, study times or private times. So the pressure was on to add another room (Jesse's pod), fix up his old room and get Poppy out from under Elise's wheels.

Elise is left with a less than lovely room...

With nothing but a bed and boxes in it, Elise felt a little left out.

So... I have had daily refurnishing requests from Elise. I am tired, have sore muscles but here goes again...

Here is a picture of last week's Gumtree purchase being sanded so Elise can have a desk.

Sanding of the very thick varnish of an old desk from Darwin's Old Legislative Council. Nothing like real wood.

By this stage I've learnt about masks. I have been coughing for the last week, too much sanding dusk. So now I have a mask on, shower cap, spotted old Stuart's shirt and old track-pants with crocs on. Well, it is practical.

Elise's new desk needed to be very carefully thought out, it has to be just the right size to fit her chair under, no bar at the back to hit her jumpy legs on, the right size to reach around, one draw only, not too big so she has circulation space in her room etc It is not easy finding the right desk.  After looking at new ones, I spotted this one for $50 and transformed it. Elise is really happy and I caught her out doing maths on it this afternoon. Who would do maths before Christmas??

This week's job

I am not planning to fix Elise's room (it needs plaster repair, repainting, curtain repairs etc) as NDIS (National Disability Insurance Scheme) is coming into play next year. They will fund a basic redo of Elise's wardrobe - gutting it, new internals with pull-down clothes hangers, draws and sliding doors so Elise can access her clothes independently. I am guessing there may be a dong or two on the walls and a little mess so she has to wait. Patience is a virtue ;-)

Renovating rooms during the Christmas rush is not a good idea, I am a bit tired.

Elise medically speaking is in good shape. Finally the problematic big toe nail fell off, all due to chemo. A little small one was underneath. However, after a few days it was bleeding, swelling and very painful. Elise braved the hospital podiatrist digging around, she discovered nail bits digging in and re-infecting the toe. Now we know why antibiotics didn't fix the problem. Surprisingly, there was another new nail under all the over granulating tissue (excess growing tissue). So that is 3 nails. She is now down to 2 nails, the top one has to fall off. It was a rather an unpleasant experience having it all cleaned up, unfortunately Elise can feel some pain.

Top nail is gone, under this nail is another nail

The Lupus is calm and NDIS called to have a planning meeting early Jan. The new year is looking good. We are very blessed.

Fri 15 Dec 2017 Transverse Myelitis one year later

A week or so before the injury: unable to eat and in great pain.

I am writing this with my eyes full of tears as I remember the dreadful events that happened one year ago today.
Elise had been horribly sick for several months before and was deteriorating.  Shannon had contacted the hospital several times and the response was that Elise seemed to be on track and to wait it out.
Her back was in great pain and nothing we could do would relieve it. Lots of massage was our only avenue.
By the 13th and 14th walking became too painful other than going from room to room. Elise then noticed on the 14th that she hadn't urinated for some time and wondered if she was dehydrated.
We spent the evening together by ourselves as Shannon and the others decided to go to the beach for a distraction as we were so worried. Elise was in so much pain that she couldn't concentrate on the comedy show I put on TV to try and cheer ourselves up with. I then watched her walk into her bedroom seeing how her gait had deteriorated, little guessing that it would be the last time walk.

At about 11:30 she called me from her room waking me. She was on the floor unable to get up. I was sleepy and tried to comfort her and hauled her back to bed. I went back to sleep deeply troubled.
At 2:30 she again woke me up again, she was on the floor unable to move her legs. I carried her to the toilet and when she still couldn't urinate I decided to go to Emergency.
I carried her body and dragged her completely floppy legs along behind from the car to the Emergency Admission area.
The hospital people were great, got MRI's and snapped into action.

In between all the medical things that were happening I took a few photographs to record the event.
I then had a brainwave and decided to get Elise to pull a face, just for a joke, to show everyone how ill she felt. I got her to hang her tongue out. Unfortunately the joke ended up in poor taste as she was really too ill to pull a good "sick face", and the shot was no good.

A joke in poor taste: her tongue hanging out to show how "sick" she is

 I had no idea how sick she was because when you go to hospital they fix you, right?

 By about 9:00am a bundle of specialist came into the room and one of them was saying how Elise would need Physiotherapy, Occupational Health, and psychologists. With that I knew something big was happening but really had no idea why they would be talking about such things.
Little did I realise that her spine was still being attacked and she had lost all leg, bladder and bowel control. The attack was still moving up her spinal cord and was affecting her hands, arms and breathing.
The breathing was a real worry to the doctors and they were on high alert. I was blissfully unaware.

The rest for the saga is well documented in the blog and as I write this Elise is at the hospital for her Physio and psychology appointments.

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