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

Thu 28 Sep 2017 Tall Ships

Today we received the exciting news that Elise and I have been accepted to sail on the Tall Ship SV Tenacious.

The SV Tenacious is a modern British wooden sail training ship, specially designed in the 1990s to accommodate anyone over 16 with a disability. When completed in 2000, it was the largest wooden ship to be built in the UK for over 100 years.

The SV Tenacious

The Monash Childrens Hospital suggested that we apply for the 7 day sailing voyage off the coast of Victoria in November. Elise and I will be crewing - night watches, galley cooking, tackling the tackle and other things that none of us understand...basically an adventure to challenge all of Stuart's muscles and lift Elise up to great heights - up the mast.

This is a wonderful opportunity as the ship may not come to Australia again for many years.  There have been people helping "pull strings" for us as Elise is underage and will be the youngest to sail for overnight voyages (this breach of the regulations meant official approval from the Captain, medical specialist and board members).

Many very generous people around the world have made this kind of experience possible for people that have special needs.

Click the link below for a 3 minute video about the ship. 

Jubilee Sailing Trust is a charitable organisation in the United Kingdom which owns and operates two square-rigged three-masted barques, the STS Lord Nelson and the SV Tenacious.
The Jubilee Sailing Trust, based in Southampton, is a sail training charity registered with the Charity Commission.^[1] Founded in 1978 with money from the Silver Jubilee of Elizabeth II fund by Christopher Rudd, a keen sailor, its aims are: "To integrate both able-bodied and disabled persons through Tall Ship sailing".^[2] The JST gets everyone on board involved in sailing the ships to the extent of their abilities, focusing on what people can do, instead of what they can't.

Tue 26 Sep 2017 Pod and Colour fun

Well, it has been a crazy month - September…must be the weather.

Starlight rooms wonders - Poppy is kept busy while Elise is in physio

Firstly…health - good. Elise’s health has been stable. We are starting to notice hints of the effects of immune suppression. This week - conjunctivitis, UTI, coughing - cold? hay fever? Fortunately Elise seems to have conquered the UTI using the old fashioned method - lots of water, Ural sachets and cranberry tablets.

Conjunctivitis - at least it clears up quickly with drops

Rheumatology news - boring, we may reduce the prednisolone 1mg and drop the pill when we like. I think we’ll wait a bit longer for that. Dropping steroids isn’t easy and we’ll be in for a rough week.

Foot - healing slowly, apparently it has been overexcited…how can a burn be overexcited!? Well, apparently it doesn’t want to stop growing tissue which means that new skin isn’t forming. So a different cream and more dressings - every 3 days at home now and fortnightly hospital dressings. We have met all the Monash plastic surgeons now, they are lovely people. It is getting better and the sore area is much smaller.

Finally on the mend - a few more weeks to go, notice all the light pink new skin

2 BIG NEWS ITEMS

1. School fundraising day. Heatherton Christian College went to a huge effort to raise funds to help towards school mods for accessibility. The school wasn’t built for wheelchairs and Elise can’t access outside the main buildings. So a fundraiser was organised (we did nothing thankfully) called 10,000 reasons - after the Christian song. It was a colour fun day, with sporting activities and colour (apparently cornflour mixed with dye - washed out beautifully). Amazingly $28 000+ was raised! We are very very thankful for all the generosity and hard work put in. Most of this money will be spent on concrete! Concrete paths for access around the school.

The kids really got into it

Video of Fletcher's - Ivy and Jai winning the primary school section fund raiser.
https://photos.app.goo.gl/DIiIbD75OZMCQpXD3

I think the amount is a bit higher now

2. Finally Jesse’s pod - as people like to call it - was delivered. This week the deck was built including a ramp so Elise can get in. It is very small 10 square metres, to comply with building reg’s of a portable building. For those who like to know - it is made of SIPS panels slotted together (insulated 3.2 rating walls and floor). Cedar outside and double glazed windows…much needed otherwise it would become a hot oven. Provision for reverse air-conditioning is inbuilt. Stuart is currently painting the inside while Jesse relaxes on Palm Island….a beautiful tropical Island of QLD with a closed Aborigine community listed as a very dangerous place! Due to high levels of early death. Pleasant. Actually, Jesse is at Palm Island on a 12 day school mission trip, 3 days training in Townsville and the rest on Palm Island.

The pod is a new room for Jesse,  Elise and Poppy share a room which is now difficult due to the circulation space for her wheelchair. So Poppy is going into Jesse's old room (after a major repaint etc...thanks Jesse for the soccer ball holes!). Jesse will move into the pod - the cheapest and quickest way to gain more room. Due to an unfortunate situation of living on a flood plain (a very dry one), new permanent buildings have to be built 1.1m above ground. So, we are going small and portable...it sits on the ground on pads and can be lifted out at any time - we expect it to be on the next edition of Monster Moves.

It was very exciting seeing the pod being lifted in - it just fitted between the trees

Nearly finished - just deck oiling, inside painting and some garden work to do

Stuart made a quick video of the colour fun day:
https://photos.app.goo.gl/BXINyEV2EZaW9OoH3

Thu 31 Aug 2017 A busy week

This week has been pretty straightforward...

Monday
Physio, OT then Rheumatology appointments for the morning. Rheumatology news was a bit disappointing, meaning no reduction in steroids (prednisolone). Last month Elise swapped her Mycophenolate to the enteric coated one, trying to avoid the problematic side-effect of 3am wakings with creepy dreams... unfortunately she couldn't get back to sleep each night. So Elise has been very sleepy.

It is now 5am wakings with less creepy dreams - well, it's better than before.  Seems that the "equivalent" dose isn't equivalent, as her blood results deteriorated, with ds-dna going up a bit and complements dropping. Action plan: increase morning dose. Hopefully things will stabilise as we REALLY want to get her pred. dose down - she is 3x over the safe limit (for her size).

Weekly med's

Started Elise on some extra supplements...never know what might help healing of nerves along. Pill box is getting rather full!

So here's the list of supplements she is now on:
Vit D - essential for Lupus and being on steriods
Vit E - great for healing
Iron/B12 every few days - she is a vegetarian
Calcium citrate - 3 tablets, essential as she is on steriods
Chinese herb formula for urinary support
Co-enzyme Q10 - implicated strongly in helping recovery of spinal cord
B5 - yet to come in mail, also implicated in healing
Probiotics - necessary due to frequent antibiotic use

Tuesday
Well, sometimes we just have to do things and this was one of these days - Urodynamics study. Elise has a neurogenic bladder ie. paralysis has caused loss of brain control. So, Elise had her bladder botoxed about 2 months ago. When you're paralysed they really botox it, high dose. This stopped all her constant bladder pain (due to spasms) and leaking. Typically, Elise's bladder spasms was one of the worst they had seen so they decided it needed checking...hence, a follow-up study of her bladder dynamics. (Not the greatest thing to have done but they are very kind!). At least it's not painful.

X-rays of her bladder in various stages of filling

It took all up about one and half hours...2 Urologists, 2 urology nurses, a radiographer and me. Actually it was fairly boring, lots of waiting in-between the intermittent x-rays and checking pressure etc. We don't want any backflow to the kidneys. Passed with flying colours.

Botoxed bladders usually last 6-12 months before having to have it re-done under a light general. We aren't sure how long Elise's will last as we have had hints it may fail early - not good.

Wednesday
Burn update...burn dressing day again. The plastic surgery clinic opens every Wednesday afternoon.
It is getting better, new skin slowly forming (the grainy lumpy look is good apparently) but it will be around another month.

See link of foot (if you wish to look)
https://photos.app.goo.gl/oDZ2E2NGnfcZCocB2

Thursday
A great day at school, esp. with a maths test result of 88%!

Sun 20 Aug 2017 Foot not great

 Elise is chugging along, attending school part-time and spending the rest of her time at hospital etc.

Foot isn't great...apparently it is worse than initially thought, the centre is quite a deep burn. We are hoping to avoid surgery and are having weekly silver dressings at the hospital. Unfortunately that means another month of low physio, no hydro/swimming, no horse-riding etc. This isn't a big deal but the significantly increased stiffness and spasticity is... it makes it hard for her to transfer and move around as her legs are so stiff or start rhythmically jumping up and down (called clonus). So the anti-spasm med's have been increased but that weakens other muscles as well.
https://goo.gl/photos/cDSHRHNdVttWxwiQ8

See link for last weeks burn progress (note: a bit ugly you may not want to look!)
https://goo.gl/photos/J85AVRw1foaLHesn7

On the medical side, we have been trying to get rid of a stubborn cuticle infection on her big toes. With a suppressed immune system and post-chemo it is proving difficult. Toe nails haven't grown since hosp admission (typical of being so sick and being on chemo) - podiatrist just told us that she will lose her big toe nails ... they will drop off. Apparently the yellow/white band on them is the nail dis-engaging from the toe bed. Sounds disgusting. I have no idea how or when a new nail will grow. Have tried - salt baths, antibiotics. Now trying - diff. topical antibiotic, iodine antiseptic cream and soon vinegar soaks. Any ideas would be welcome. We thought a cuticle infection wasn't a big deal - it usually isn't - but when she was admitted last time overnight, the IV antibiotics cleared up overnight her swollen purple lower leg...now we think was the infection going up her leg. It can turn very nasty.

Looking red and swollen

How do you warm up feet with bad circulation?

Click on the link below to see part of her home exercise routine.
https://goo.gl/photos/MnoSzNKRyPv5XaH79

This weeks exciting thing was Elise perfecting her ability to get into her wheelchair from the floor. Pretty important skill for daily exercises and independence. See link below of her recent attempt.
https://goo.gl/photos/5Eb5MY1weY8mEvX49

Generally speaking, Elise's physical improvements are now modest...it is more about technique and gaining strength to learn more wheelchair skills etc. However, continuing physio, horse-riding etc will make a big difference to her movement over time. 

Thu 10 Aug 2017 Update on the burn

Yesterday Elise had her second visit with the Plastic Surgeon to check on how the burn is progressing on her heel.
The specialist was pleased with the progress and put on a new dressing and another patch impregnated with a silver based medication.
Next week there is another appointment and if the good progress continues the next stage of dressing will be used.


WARNING: the link below shows the wound so don't click on it if you are faint hearted.
https://goo.gl/photos/L6NGXQZv6oZAf9YXA