Hi everyone :) was hoping to have a nice simple update today but as always i have sooo much to tell you all! Lilly has been in hospital again with pnuemonia from an ordinary cold. Apparently because she doesnt swallow her saliva, and the cold virus lives in the nose and mouth, her saliva aspirates little drops in to her lungs and the cold virus gets to her chest that way, so even a simple sniffly nose can be dangerous for her.
At one stage they thought they would have to put her on oxygen at home when she sleeps, but they started her on a new medication to dry up the secretions in her lings and produce less saliva and so far it has worked miracles! she is no longer my little gurgly seagull!
They did find she has obstructive sleep apnoea, and a tonsill and  adenoids removal may be in the cards in the future.
while we were in, they discovered that she has a condition called macrocytosis, which is enlarged red blood cells. She also has nuetropenia which is lowered white cells and platlets in the blood. This in itself is nothing but its what might be causing it that can be a worry.
So they are doing a Bone Marrow Biopsy on the 30th May as well as a chest CT under anaesthetic :( Scary, they dont expect it will show anything sinister, but the mere thought of luekemia is scary enough! she has enough issues to deal with.
they wil repeat the sleep study too just to ensure they made the right decision about the oxygen.
And then they tell me that her kidneys are in danger of damage because her urea is high, and she needs more water in her feed tube a day. She will float away at this rate. Also she is having increased seizures and apparently her Epilim level is high, but having trouble getting in contact with her neurologist GRRR
She is home now and doing extremley well
While all this is going on my hubbys dad has a stroke, two actually and is in ICU. So hubby is flitting between home and two hospitals as well as working at one. I am trying to be supportive, he is usually my rock so the roles have been reveresd for now.
But greatfully we have had much support and kind wishes from our freinds and family both online and offline lol
He is stable at the moment, but we are in the waiting stage to see what the prognosis is.
other than that i have been trying to spend some quality time with the girls.
I have been to a baby shower, and had a great night at the girls cub scout parent night.
looking forward to some holiday time at the end of the month, only three more shifts at work to go!!

Ups and Downs

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.

Losing Dreams, Finding Hope

Losing Dreams, Finding Hope
by Lilly Lane - Kids without Diagnosis 
Saturday, 17 March 2012 at 23:06 

From the moment you feel those little bubbly tummy wiggles

And feel the life inside you grow

You dream of what will be

You dream of baby giggles,

smiles, and laughter

As a mother to be, these are things you just know

And when you see those eyes for the first time

And you fall in love

There is nothing in the world at that moment

that can break that dream

Until you realize there is no cry

And you don't know why

She seems happy to just lay there

and not feed

She moves, but in a strange way

Her head is shaped funny, you don't care you tell yourself

I am her mummy

And I love her whatever

As time goes on it seems ok

You tell yourself it's not that bad

Those dreams still remain

Until there is no first smile

No first roll

No first word

No first step

The bleachy smell of the hospital walls and floors become your second home

As the medical world scratch their heads

And tell you they really don't know

You know, inside deep inside

Those dreams have shattered and been stolen away

In the end it doesn't matter what they say

You realize you have lost your baby in a way

Not in breath but in dreams of the future

Dreams of forever

Dreams that will be never

As you spiral down in to the unknown

An internal battle rages on

Information overload

Do I grieve or do I cowl

Do I dare to dream again?

The answer is yes but not as before

Dream with the hope that you find in your love and in her soul

Between your heart and your head there will always be war

But as long as there is hope, new dreams can be formed

There is hope in her eyes, and dreams of making you happy

Of feeling your love, and seeing you smile

She doesn't understand why you cry

Or why you constantly ask why

So hold her close when you feel that burst

Of hopelessness outside you lurch

And dream of the day that you will be happy

To accept the new dreams and hope that she shows you

In her eyes and in her unconditional love

Written by C.J Lane Founder of Lilly Lane - Kids without Diagnosis on Facebook.


**I wrote this for myself and for my daughter Lilly, this is the journey which I am now travelling and wanted to share it with others in the hope that they dont feel so alone. I am still facing a daily battle between lost dreams and finding hope, but when I look at her big wide beautiful eyes I see she needs me to be at peace so I can love her in her entirety.