Thur 09 Feb 2017 Eight weeks today

The days roll by quickly and the loose daily rhythm has grown to now include... clinical psychologist visits, toileting specialist daily visits and procedures, weight strengthening program, as of next week regular teacher sessions for maths, the usual OT and physio sessions, daily stretching and massages, dietitian visits and weigh-ins plus physio daily homework, medications etc. Add the specialist visits etc and we have a packed schedule...actually the OT today was noting that we just couldn't fit everything in...something had to go! She kindly cut down from 3x day weights to once a day ...very generous ;-)

Elise has had a difficult week, not being able to eat all week and feeling just plain yuck. However, that hasn't stopped her achieving some new milestones this week...she began walking training with full leg braces (as she has no knee-foot control), is able to pull herself into a crawling position, and used a tread mill...all very exhausting. Physio and OT are very happy with progress.

In the background a lot is happening...eg. arranging disability parking stickers, applying for Ronald McDonald free high school tutoring (a year wait), liaising with school via social worker, applying for government grants for equipment - that is a big one...it usually takes 1.5-2 years to get funding for a wheelchair. Ouch! The custom wheelchair will cost around 5k and we can't buy it in advance, so they are pushing for early funding as she is an inpatient and urgent. Meanwhile we will have to use an adult basic rental chair which is hard for her to self-propel. Well, it's a first world problem. As yet everything is free...oh, we have to pay for wet wipes. How blessed we are.

On the treadmill

Treadmill with 3 staff assisting
https://goo.gl/photos/ES53ZiQxhxEPFx9b6


Hip exercises to music
https://goo.gl/photos/CB3mKaAbrxSDWJFe6