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.
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| 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.
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| 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).
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| Patches and sanding completed, first coats on. Stu's photography lights are handy. |
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| Poppy painting her wardrobe internals...a safe option! |
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| Poppy's new room |
So Jesse is now in his new room too...
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| 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...
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| 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.
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| 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??
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| 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.
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| 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.
