21 Mar 2018 Lupus, Transverse Myelitis, paraplegia and NDIS funding

Work hard, save, then spend. I was brought up on wise words and much to my son's frustration, he has to earn his wants...save for his ripstick, work for his phone, help the family. Here enters funding, it is not natural for me. It doesn't sit well with me ... money for nothing, begging isn't my style. So I swallow my wise words and remind myself we live in a commonwealth - wealth common to all, and try and not think about it too much.

NDIS (National Disability Insurance Scheme) rolled out officially in Nov 2017 in our area, we were contacted just before Christmas and a meeting was arranged 2 Jan 2018 in a temporary NDIS building, very discretely. No contact numbers, address given at the last moment, reluctantly. Maybe spies are a problem?

On the very positive side, without the new government initiative of NDIS we would have to self-fund, like many before us...unless of course, you are under TAC. So we are very thankful, albeit apprehensive of how the fledgling system works.

Yesterday, Elise, Poppy and I spent an hour with a Prothetist to create moulds for Elise's lower legs... new orthotics are needed (or Ankle Foot Orthotics) to reduce muscle/limb contracture and deformity. Not using the legs means that the long ligaments tighten and force the feet into an abnormal permanent position, something to avoid. NDIS stated ~$450 for this custom item, the Prothetist flicked through our NDIS plan...who nominated this amount? It costs $2800, to be replaced every 18 or so months.

 

NDIS plan sample - AFO's listed plus an adapted clock! Wrong button push from the NDIS planner.

Today has been a very frustrating day, the government kindly help but then make things very difficult. We have been allocated way too much for personal care/social inclusion and way too little for necessary things like a pressure care mattress. It is inflexible, so now we left wondering what to do. Stuart thinks we will have to contact someone higher up... hmmm.... not my style. At this moment, Stuart is looking up details of the Disability Services Commissioner.

The NDIS meeting was a new experience, government style. They were polite and sensitive but nearly all the allocated time was spent answering a mostly irrelevant lengthy online questionnaire... the lady was very apologetic.

Can she stand up?  No...she is a paraplegic
Can she walk? No ... she is paralysed
Can she button her top? Yes... she is only a paraplegic, not a quadriplegic
Can she feed herself? Yes... she is only a paraplegic
Can she handle money? Yes ... it is only paraplegia
Can she save money? Yes ... she is sensible, it is just her legs...

Then there was my question... do you know anything about paraplegia? ... "NO."

I felt sorry for the NDIS lady. So we finished the questionnaire and it was clear the meeting was to be wrapped up. What about her needs? What about the long list of things required for a paraplegic? So we handed her our extensively researched plan and hoped it would be enough.

First page of our detailed plan

The thoughtful NDIS lady... "we will give you a great plan, you will be really happy with it. You really will."

So we left the meeting with out heads spinning, having no idea what we were going to end up with. Our detailed plan was very detailed, in fact, it took over a month before they rang us and said Elise's plan was ready to go. Then the delay in waiting for the code to open it online, through the MyGov portal. Then the next delay with getting the Plan Manager signed up, then the delay in more paperwork for each and every provider of services :-(   Necessary evils.

I am slowly working through it. Today I received our first delivery of continence equipment. A relief as one of our sets is 6 months old, yellowed and mouldy (despite cleans) - they are meant to be replaced frequently but at $6k/year we have held out for funding. It was an exciting delivery.

This year obviously is going to be interesting - paperwork, negotiations, meetings plus 2 kids doing VCE subjects and one still on readers. Be calm, patient, use a cheery voice ... self talk is wonderful, it is good for my limited intelligence and brings harmony to the family.

Mon 19 Mar 2018 Horse Riding Update

Last Monday I took Elise to Balmoral Equestrian Centre, http://balmoral.info/ for another one on one lesson with Julia.
I have only seen her riding once before and that was on her very first occasion.
What a difference!
Julia is clearly delighted with Elise's progress as now Elise has reasonable control of the horse, Rocky.
Elise's core strength is being helped by all the careful balancing that must be maintained throughout the ride.
After her lesson I noticed just how much Elise had warmed up with the exercise even though she and Rocky were only moving at a fairly slow pace.
Moving without a wheelchair gives a wonderful feeling of independence to Elise so there's lots of smiles at the end of the session.
Click on the link below for a short video of the days highlights.
https://photos.app.goo.gl/PMJEu8EBFjnogAxo2

Wed 14 Feb 2018 Beach visit and NDIS

Dreamy weather on the bay.

Over the Australia Day weekend we took the time to visit our beach house at Blairgowrie. The good news is that Elise was able to get into the sea three times in the perfect weather that we had.
She had some real fun in the little boat and a very good go lying on a small boogie board.

Preparing for the voyage

Shannon has been laboring hard for many months over the National Disability Insurance Scheme, NDIS, forms.

We had our interview with them on January 2nd and yesterday received the first lot of paperwork accepting the majority of our suggestions. We are very blessed to live in the wonderful country that we do.

The NDIS funding covers things like physio/gym/psychologist, some equipment such as ramps, shower benches and continence equipment. We are still negotiating for a few things - such as a $9k power assist for her wheelchair so she can go longish family walks...something we do a lot. More details to follow when the plan gets off the ground.

School routine has started, Elise is aiming for 4 days/week if poss. That will be a bit of a push, especially as she is starting 1 VCE subject and 1 VET subject this year - trying to spread VCE over 3 years to reduce fatigue. Fatigue is a real issue - so is doing too much homework!

One surprise blessing - there is an upside to doing lots of rehab physio. VCE Physical Education studies so far are a breeze as Elise knows many of the physio terms, positions and muscles.

Fri 12 Jan 2018 Hospital visit over

Home sweet home!

Elise is just home from a week (Monday-Friday) in Monash Children's Hospital. She "enjoyed" a couple of intensive physio sessions per day plus her other regular appointments... Stuart wrote enjoyed but I say, blood, sweat and tears.... well nearly, she was exhausted from three tough sessions per day pushing her to her limits. And running through my head is the question, why??

Well, we are all hoping some of her core muscles and hip muscles will either strengthen or kick in a bit more. Forget about the legs, this isn't about the legs... they aren't going anywhere. If Elise can improve her core strength then everything is a bit easier... she can reach down to her shoes with less support so she doesn't just fall like a ragdoll, or she can pull off her T-shirt without me holding her so she doesn't topple over. It would be nice to feel in control while sitting up. Small pleasures.

Tanya, (super Physio) Elise and Poppy on leaving hospital today.

Elise felt like a celebrity returning... in the Rheumatology clinic we were met by the endlessly enthusiastic rheumatology nurse Leanne with loud chats about holidays, hiring new staff, the news on the block... (many surprised looks by nearly patients), next was the Registrar Dhanusha, ushering us in to the clinic room beaming from ear to ear, just to sit in with another specialist to catch up on the latest bloods. Then came the cheers from the passing pharmacist's and on it went. Wish I was this popular!

Well, we don't know if the intense helped yet. I guess we will have to see if there is any improvement over the next few weeks. Bloods have not been quite as good this month so we are taking care on the Lupus front. Elise took the opportunity on Monday to pop over to Day Surgery for a General, for her second bladder botox. Just fitted it in after physio, rheumatology appointment and fasting all day. Unfortunately the botox ran late so she missed her second physio session - phooey!

NDIS update
With fear and trepidation we attended our planning session for NDIS, on January 2nd at a temporary location beside Southland Shopping Centre. We were a little nervous, Stuart and I, as this session's outcome will affect everything - good and bad.

NDIS is very fickle, as to what they decide to fund. We really hope they will fund her ongoing therapy and physical needs. They were very caring and sensitive, however as the assessor knew little about paralysis and most of the time was taken filling in the online general questionnaire - we were left a bit disappointed, not because of the assessor but due to the NDIS's method. Thankfully I could hand them my multi-page plan with detailed requirements to process. Otherwise, I have no idea how they would have worked out she needs a pressure care mattress, $10k/year continence equipment, car modifications for learning to drive et cetera. We are waiting for the phone call to inform us of their funding commitment.

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.