Ok so it has been 9 months since my last post! have been on a rollercoaster ride again. Lilly has grown so much, she had her 2nd birthday last month. So proud to have celebrated it..but on the other hand it has been a wake up call too. 2 is the age we were told to wait for to assess her development and her prognosis. So she is 2 and still not able to sit, crawl, stand, walk or talk. She can roll all over the floor though, and squeals and laughs and sucks her thumb. She is able to look at things if only for a second we can definatley notice her glance at it. She has just got new AFO's on her legs to help her ankles straighten. We have been back in hospital in january/ february for a Psuedomonas pnuemonia, and had anothe PICC line and a 10 week course of antibiotics, Since then..touch wood we have been home and coping well :)
The neurologist told us he doesnt expect she will walk unassisted, if at all, or be verbal. that she is likley to be severely Autistic and ans intellectually challenged. The physio told us we would prob eventually need a wheelchair. The repsiratory dr thinks she has bronchomalasia, a condition in which the secondary airways collapse and dont allow clearance of mucous and secretions and that is why she always gets chest problems, We are anxiously awaiting an overnight oximetry and airway screen next month.
We have started special early ed visits with Kilparren special school, jenni is great with lilly, and lilly really responds to her.
We are looking in to child care / respite options.
As you can see there are lots of downs but just as many ups! So i go down, in to the depths of despair for my baby and then i shake myself and tell myself to cherish the things she can do and focus on the ups! i wrote a poem called Losing Dreams, Finding Hope to portray this..read in previous post.
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