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.

Lilly Bell Baby Blog

Lilly's blog now has a Facebook update, so know you can visit both websites and know whats going on, and can access Lilly Lane Kids Without Diagnosis from Lilly's Blog.

Lilly's Eye Test Results.

Lilly had her Retinogram and BrainEvoke Response Visual test this morning. Basically the findings are: There is evidence of degeneration in the light receptors in the Retina, which is worrying and will need following in the next year to watch for any changes. Her brain responses are almost normal to visual stimuli at the moment though which is good news, But the right side of her brain responds better than her left which suggests some asymetry in the development of her brain. This means she sees better with her left eye and coincides with the fact that she uses her left side more than her right side. She will need to be sedated or under GA to have her retinas investigated. She may be able to were glasses as it appears she can see larger objects as opposed to smaller ones. We have been referred to Can Do 4 Kids, an organisation which assists those with visual and or hearing impairments. Whoo lots to take in

May 2011 - PICU visit

Last post we were awaiting the PEG insertion. Well that was done , but from the minute it was done, lilly had problems tolerating the feeds. She would scream evry time the feed was on, then burp and vomit. After 10 days of this she developed a wheeze and was breathing really hard and fast.  We took her to the LMH where she was treated for asthma? and given ventolin and oxygen. She continued to vomit and not improve at all, They couldnt hydrate her because they could not get a vein to give her IV fluids, even with an ultrasound to guide them. The doctors told us they were transferring her to the WCH in case she got worse, because she might need to go to intensive care. At this point i was worried but not too much, i mean it was just in case right?

On the 25 minute ambulance ride to the WCH, mu Lilly Bubba struggled to get a brreath and had practically stopped breathing when we reached the hopital. They raced her in to resus where i stood, watching them run around my baby, stick things into her all over, gave her an adrenaline shot to kickstart her breathing and bring up her heart rate, gave her ventolin, oxygen and other drugs to keep her breathing. It was like a dream..i knew it was happening but i didnt feel anything..numbness, shock, disbelief. My Nurse side kicked in and took over from my mum side i think so i could cope. Thank you nurse side!
She was admitted to the paediatric ICU and given ventolin and oxygen. Because her oxygen was so low she had a hypoxic seizure, and then hd trouble keeping her oxygen up, and was still breathing with such a struggle that thy ventilated her with CPAP. This is basically a mask, which seals over her nose and mouth, forces air in to her lungs and keeps her lungs inflated so she can breathe out and get rid of the Carbon dioxide that builds up. She was on this for 3 days. They put in a central Venous line in her femoral ( groin) artery for fluids and drugs. She was given antibiotics aswell. Her left lung had totally collapsed, and her lungs were filled with thick sticky mucous which was acting as superglue.

The docs are saying she had a virus which turned into a pnuemonia, testing positive for staph, so then turned bacterial. But she may have aspirated in to her lungs on her vomit or feed. They are not sure, so they are doing a Ph probe to test for reflux.

I am currently sitting in WCH now, while lilly undergoes Ph testing. It takes 24 hours after a tube with sensors is put down her nose into the oesophagus and measures the acidity of fluid coming up in to the throat. I have to press buttons on the recorder when she coughs, cries or vomits, or eats/drinks until 2pm tomorrow. She is doinfg much better now, off the oxygen, saturating well, happy and bubbly :) Except that she now has an infected and very sore peg site :( Darn hospitals! Three samples of hers tested positive to staph whilst in here that were clear before.


I have been in a daze, not able to think more than a few hours ahead of time. During all this i had to do a presentation for my TAFE course and i have another which i am supposed to be preparing for now instead of being on here! lol Cant wait to get her home again and settled. I am over this hospital stuff...yet again!

 I am however ever so greatful and priveledged to have such a wonderful supportive family, bunch of friends and online community at Lilly Lane Kids Without Diagnosis xx

Thank you Giveaway!

In celebration of reaching 200 + Likers on my Page Lilly Lane-Kids without Diagnosis I am saying a big thank you and Giving Away a White Musk Heavenly Bag with thanks to Louise Warner from the Body Shop.

It contains White Musk Shower Gel and Body lotion60ml, White Musk soap, Shea Body butter and a Sisal wash cloth all in a convenient toiletry bag!

To be in the running simply visit my blog
 http://lillybellbaby.blogspot.com
     
And leave a comment under this post stating why you deserve this "Pamper Pack" Each comment will be given a number in order of post,  and a winner will be chosen randomly through Random.org. Winner will be notified via this Blog. Get your comments in by Friday 29th April!

This giveaway is soley the responsibility of Lilly Lane - Kids Without Diagnosis and Facebook or Blogspot are in no way affiliated with this giveaway. Winners will be chosen randomly using Random.Org engine and notified via this blog. If postage is required there will be a $6 postage charge. Sorry Australian Residents only. Entrants are required to leave a comment under this post stating why they deserve to win, be given a number in order of post and randomly chosen through Random.org. To post a comment entrant will need to sign in and follow this blog by creating a Google account or similar. Giveaway begins Friday 15th April 4:30pmACST  and ends Friday April 29th at 9:00pmACST.

Louise Warner The Body Shop at Home : 0430 063 171 for home pampers parties to share with your friends! Free gift to the host and special goodies for your friends :)