Fri 12 Jan 2018 Hospital visit over

Home sweet home!

Elise is just home from a week (Monday-Friday) in Monash Children's Hospital. She "enjoyed" a couple of intensive physio sessions per day plus her other regular appointments... Stuart wrote enjoyed but I say, blood, sweat and tears.... well nearly, she was exhausted from three tough sessions per day pushing her to her limits. And running through my head is the question, why??

Well, we are all hoping some of her core muscles and hip muscles will either strengthen or kick in a bit more. Forget about the legs, this isn't about the legs... they aren't going anywhere. If Elise can improve her core strength then everything is a bit easier... she can reach down to her shoes with less support so she doesn't just fall like a ragdoll, or she can pull off her T-shirt without me holding her so she doesn't topple over. It would be nice to feel in control while sitting up. Small pleasures.

Tanya, (super Physio) Elise and Poppy on leaving hospital today.

Elise felt like a celebrity returning... in the Rheumatology clinic we were met by the endlessly enthusiastic rheumatology nurse Leanne with loud chats about holidays, hiring new staff, the news on the block... (many surprised looks by nearly patients), next was the Registrar Dhanusha, ushering us in to the clinic room beaming from ear to ear, just to sit in with another specialist to catch up on the latest bloods. Then came the cheers from the passing pharmacist's and on it went. Wish I was this popular!

Well, we don't know if the intense helped yet. I guess we will have to see if there is any improvement over the next few weeks. Bloods have not been quite as good this month so we are taking care on the Lupus front. Elise took the opportunity on Monday to pop over to Day Surgery for a General, for her second bladder botox. Just fitted it in after physio, rheumatology appointment and fasting all day. Unfortunately the botox ran late so she missed her second physio session - phooey!

NDIS update
With fear and trepidation we attended our planning session for NDIS, on January 2nd at a temporary location beside Southland Shopping Centre. We were a little nervous, Stuart and I, as this session's outcome will affect everything - good and bad.

NDIS is very fickle, as to what they decide to fund. We really hope they will fund her ongoing therapy and physical needs. They were very caring and sensitive, however as the assessor knew little about paralysis and most of the time was taken filling in the online general questionnaire - we were left a bit disappointed, not because of the assessor but due to the NDIS's method. Thankfully I could hand them my multi-page plan with detailed requirements to process. Otherwise, I have no idea how they would have worked out she needs a pressure care mattress, $10k/year continence equipment, car modifications for learning to drive et cetera. We are waiting for the phone call to inform us of their funding commitment.