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 

Mon 31st Jul 2017 Super good news on blood

dsDNA is the best so far.

Complement C3,4 first time ever, except for an anomaly, in normal range.

Inflammatory marker ESR, extremely low.

The blood tells it all and the info from this last sample delighted us.
Elise's ESR told the specialists in the first instance that she had Lupus two and a half years ago. Unfortunately it never dropped to a satisfactory level, only now, for the first time, it's within range.

The wonder of modern medicine in combination with the miraculous human body has brought the levels under control.

We had a disappointment Saturday evening in that there was an accident with a hot water bottle being too hot, resulting in a second degree burn on her heel. Because there is no feeling in the heel, Elise wasn't able to tell it was being damaged and didn't know for over an hour. This resulted in another trip to Monash Emergency - a special dressing and an appointment with a Plastic Surgeon in two weeks time to check on the healing process.

Sun 23rd Jul 2017 Settling in to home life

It as been a few weeks now from discharge and Elise is very happy to be home.

Below is a list of some of the recent highlights and ups and downs.

2 weeks of school hol's
- nearly every day at hosp for physio/OT/clinic appointments/pathology etc.
- overnight stay down the coast ended up at Rosebud emergency with infection
- another overnight at Monash Children's while they tried to work out what happened...
fascinating listening and watching the experts throw around ideas, discuss medical possibilities in a foreign language, having a group of about 6+ specialists discussing ideas is a different world. Result: IV antibiotics, observations, more samples and wait and see approach.

- Friday 7th July was a big day...Jesse's 16th birthday and for Elise, the arrival of her new wheelchair (unfortunately it needed some minor mod's so it was taken away again till Monday - an emotional blow).

- Monday 10th July.  On Monday it was returned, more minor mod's...balance point changed etc. Final weight 14kg, a bit heavier than we thought but it wheels beautifully and will make her life so much easier. She is working on "wheelies"...very practical actually so she can learn to go over small curbs and bumps.

Below is a video of Elise practicing a mono.
https://photos.app.goo.gl/0dzb9ka3vQeBj7rh1

In the afternoon, Elise went out with her new chair to Chadstone Shopping Centre with a school friend, Jessica. First time to experiment with disability toilets and movie theatre seat logistics. All went swimmingly well....a relief for all. Elise now has her own "Companion card", which allows free entry to many things for her companion. A nice bonus, especially as now we will have to do more inside things that cost due to accessibility.

- last Wheelchair skills session with Richard Colman, http://colman.com.au/

Link of the skills session video:
https://photos.app.goo.gl/pXRci4tPSmZxcg0r2






- Thursday 20th July. First hydro session.
Elise has been pushing for hydro for months, finally the hospital agreed that she could go...they wanted her to primarily focus on physio for leg movement, not swimming. But after arguing that her painful shoulders needed more attention, she won out and they organised it. As it turned out, it was a blessing.

Many paraplegics can't swim, their legs and hips just sink. We had no idea what would happen when Elise got into the water, so it was very exciting when everything went fantastically.

https://photos.app.goo.gl/20BIB3g0eN4q652F2
https://photos.app.goo.gl/xBKlKP1TlbpEwdSp2 

In fact it went so well that I have subsequently spoken to our local swimming school and they are keen to take her on. Obviously, swimming would be brilliant for her upper body. We need to keep her exercising regularly to minimise repetitive injury from pushing her wheelchair.

School start
1 1/2 days so far, all went well.  We are aiming for 3 days/week for this term. This allows for all the hospital visits, daily home exercise, horse-riding and everything taking so long.

In summary, we feel very blessed. There is much to be thankful for.