Monday 31 July 2017

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.




Sunday 23 July 2017

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.