i am a mum of a special needs child. my daughter has been diagnosed since 6 wks of age with Caroli's syndrome. This rare disease is genetic and affects 1 in a 100,000 babies....and yes, she is the lucky lucky one.
it affects major organs of the liver and kidney. due to poor management of blood pressure, she now is in ESRD, a term for kidney failure and she is currently on long-term life support by means of peritoneal dialysis administered at home by myself nightly. since dialysis entered our lives, we have been pretty much home-bound for 1 year and counting until we are transplanted. we are not even on waiting list for eligibility for transplant as she has yet to clear the medical board due to her liver stabilization issues. But i am making it my goal for 2014 to get her on the list.
due to her kidney issues, she has global developmental delays and has muscular issues causing her to have mobility issues. she can stand up but can't walk yet, and is very small for her size, she looks more like a 2 year old than 4 year old. so we're constantly working on that as well to make her learn to walk and conquer the fear of falling.
she is a bright little girl. despite not attending schools, she has mastered her ABCs and 123s, shapes, planets, animals, colors. she loves music and singing. she can learn songs almost immediately and recite them back in one try. lately, she has begun to be more 'girly' and asks for hair-clips and wants to dress-up 'pretty pretty'. girls being girls.....
she does misbehave and has learnt to demand for things and argue back. she had an extended 'terrible-twos' phase when she was hospitalised for 2 months when her kidney failed. due to over-pampering by my mother-in-law (mil) she has been spoiled in ways which i am trying to correct now. i am the disciplinarian in the house and do not believe in sparing the rod.
i really hope she can be more independent and i am in the process of getting her to attend a special needs school in an attempt to get her to mix more with peers. she is home-bound most of the day and needs more exercise and fresh air than she gets. although such a school is expensive, they have physiotherapy sessions which she needs. also, mainstream schools have rejected her mainly due to her inability to walk. so that's our only option.
my wish for her in 2014, is to : - get on the transplant list - be toilet trained - learn to walk
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