Help get Louise adjusted to her new independence
Taranaki
My granddaughter Louise is 23 now after fighting her way from the tiny 1lb 13oz (810gms) wee skinned possum with see through skin to become the determined sassy incredible intelligent caring independent young lady that she is but sadly the 8th February she had the first ever of what is now over 900 seizures.
After 34 days in 3 different hospitals 28 days home & now into her 2nd week of another stay in hospital. Louise’s words on her diagnosis from over the years summed it up well.
"I have cerebral palsy with spastic diplegia
I’m on the asd spectrum (autistic)
I have somatoform disorder and now Functional non epileptic seizures these have affected my pre existing cp greatly which means Im wheelchair bound 85% of the time & a zimmer frame, with a now curved up foot due to the spastic diplegia locking my muscles in place"
To bring Louise home this time we have noticed a few extra things that are need at her house to make things just that little bit safer.
My daughter asked for help to purchase a Apple Watch for the fall option and outstandingly has been gifted one so that has now opened the opportunity to help Jodi get a heat pump for Louise’s house, no body thought about the fireplace becoming a hazard now, & because the fire place works all of the “warmer home” options have declined her request of assistance
This list is endless so any little bit of help to help ease the burden these extra costs have placed on her Mum would be greatly appreciated
I’m Louise’s Nana
Neurologist appointments
Heat Pump
Added Handrails …..
Ticking along 1 May 2023
Sorry I been a little quiet , so much going on behind the scenes. The neurologist rang to follow up (shock horror) and was very surprised Louise’s seizures were still continuing so is booking her into a seizure clinic for monitoring either in Auckland or Wellington… so we sit and wait for that… more funding has been declined so we do our best with what we have. Physio coming to see Louise tomorrow. One more quote coming for the heat pump and hoping to get curtains hang asap… Louise is doing better than she was the medication changes have calmed things down a little but it’s still so frustrating to see her not being able to do the things so loves to do … thank you all for your donations means the world to me and Louise.
Pic is from when aunty turns into a support worker and brings baby … baby cuddles are the best.. love to see you smiling Louise
Thank you very much Karen. It’s been and going to be a hard battle for her.
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