Love for Miss Lilly

Lilly was born at 25 weeks gestation which is roughly 4 months early weighing 915 grams. 3 days after being born we were taken to the "quiet room" in NICU because the specialists had discovered Lilly had a grade 4 and 3 brain hemorrhage (IVH) and they didn't think she had long to live, as she was a very sick little baby, so they asked if we wanted to continue treatment with her. As they didn't think she had long they organized professional photos to be taken with her and we rushed available family to come say goodbye. We were having our cuddle and she grabbed my finger and opened one eye. Well after that we knew we had to keep fighting as long as she was willing to. Well fast forward to now and our clever Lilly is now 3 years old and has hydrocephalus (water on the brain) and because of this has a vp shunt. She has hemiplegic cerebral palsy which affects the left side of her body. Overall she has had in her short life 5 head operations including a cranial expansion, were they put 5 springs in her head to open it up as over time her head had grown too narrow and had put pressure on her brain. Through all of this Lilly has been very brave and strong and is such a happy little girl who makes us as parents so proud and lucky. She is not very verbal only speaking a couple of words like Mum and car but is very good at telling us what she wants, she is not walking as yet but gets around "bum shuffling" which burns holes in a lot of pants. Before the cranial expansion she could barely see now her vision has MASSIVELY improved but she was recently diagnosed with CVI or cortical visual impairment which means she can see but at times she can lose her vision or it may not be very clear, due to various things such as to many things going on with noise people etc. We have just been to Auckland at the BLENNZ hq were they did a full assessment of her abilities and needs. We learned a lot about Lilly and learnt a lot of new tricks to help her. We also found out we need to get some things. This is were we are hoping you will help. To help with learning to communicate we are getting some drums and other instruments to help her. She will benefit greatly from constraint therapy which will teach her she has a left hand and how to use it, which will hopefully lead to her learning to crawl. As well as future ongoing treatments. We would appreciate your help to give our little superstar everything she needs to reach her full potential. Please visit her facebook page link below.