6th June 2018 Routines and slight toe movement

Well, it feel like ages since I did the last post and as usual, I have plenty to say!

Elise is looking more like herself now as the steroids are lower

School, hosp. visits and exercise have now formed a steady rhythm. Some weeks are really busy and others less so.

A snapshot of last week of appointments:
Monday     
Hosp psychologist followed by
Rheumatologist followed by
OT/physio review
Pharmacy visit
Wednesday
Pilates by physio
Thursday
School meeting to assess curriculum, tutoring, physio
Personal trainer gym session
Friday
Gynaecology appointment

We fit these things around my other two kids activities etc. Thursday I had colonoscopy and gastroscopy, people for dinner etc Like everyone in modern society, life can be a bit too busy.

With this in mind, on Monday we had our first "carer" booked session - using the user friendly HireUp company, we booked a lovely young lady to take Elise to her horse riding sessions. It takes approx. 3 hrs return and that doesn't include the stretches afterwards, cleaning the wheelchair (it gets really mucky in the mud and the arena dirt floor), food prep and sorting of clothes/equip etc So Bonnie came at 11:30am as booked and had a lovely time with Elise.

I love going to Harkaway but all these appointments take it's toll. To have some time at home to catch up just seems wonderful... actually I didn't know where to start and on Stuart's suggestion, pruned the standard roses. The sun was shining and yes, it was a relief to potter and smell the roses until school pickup time.

So Bonnie is booked for 4hrs in a fortnight. HireUp is an online disability agency that charges a small booking fee so the worker has a higher pay. This is appealing as some agencies pay their staff poorly.

New brace for horse riding

The longer horse riding sessions of the weekend clinics (she attends approx every 6 weeks), are leaving Elise aching and sore. So the physio (who does her pilates), organised a trial of back braces. It always amazes me, anything with a medical stamp costs a fortune but the brace, beautifully constructed with multi-layers, fully adjustable, velcro, guaze and special breathable material was about $46.

Resistance training at her pilates session

Recent news!

Elise is now able to move one of her big toes, yes, it isn't massive but she can move it up and down or sideways a bit. There has always been a little flicker in her toe so often at night Elise practices and finally it is moving. As Elise said... just to feel the plastic of her AFO's or the top of her shoe with her toe ... simple pleasures! It is odd how sometimes people get toe movement back but nothing else, probably due to the position of the L5 nerve fibre in the spinal cord. Unfortunately, she can't feel any other flickers to work on :-(

Medical update
For the last 6 months the ds-dna (lupus marker) has been gradually increasing, from 99 at it's lowest to over 300 now. Last week's Rheumatology appointment was like this...

Rheumatologist... well, should we do anything? Is it significant? There are no symptoms.

Me... well, the ds-dna always co-related with higher Lupus activity in Elise. Anyway, last time (her big episode) there weren't many obvious Lupus symptoms as well (her symptoms were severe but not typical). She is flushed in the face every day now, that always happens when she is worse.

Rheumatologist... mulling things over... yes, agree, it probably isn't a good idea to let ds-dna go higher ... it did get up to over 3000+ last time (almost never heard of amount).... so what should we do?? we don't have much idea of what will work

Me ... how about we increase the Myfortic dose? Just a bit and see... maybe it will help

Rheumatologist... I could contact all the Rheum people (Victoria) and see what they think... they all know her you know

Me... true. How about we try increasing Myfortic first and if it doesn't help then we could put a call out

Rheumatologist... sounds good. We'll look at her bloods in 3 weeks, just text the Rheum nurse for results and we'll go from there


The Rheumatologist is great, we are in unknown territory and he doesn't make things up. So last week we put the Myfortic (Mycophenolate Mofitil enteric coated) up 180mg. A small amount to see what would happen. We are yet to see results.

For those who don't know, Myfortic is a drug used to suppress the immune system for people who have organ transplants.

To finish off.. here are some recent shots of having fun despite legs that won't work. 

Fun in the bay with the Anne and Graeme Byrne and my kids