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AOS

Thankyou for your comments.

Family and friends sharing information about there experience of AOS is always appreciated.
I hope everyone is well. Sorry my posts here are not as often as I'd like , its none stop as Daisy gets older. :)

Making memories everyday ;)



 Daisy now 8years old with her sisters Izzabelle and Ebony :)

Update 2017


Daisy is 7 now.

She is still amazing and so are her much ed loved brother and sister.

Daisy has grown loads. She's as tall as her fellow class mates.
Educational she is progressing.

Daisy attends a special needs school. Her class is matched with other children that are at her level of learning.
Daisy is the only girl in her small class of 8 boys! Each child has there own curriculum of learning. Each child receive's tools and techniques that enables them to learn.
Daisy has developed so much since she started a statemented school.

She still talks and signs well to aid communication.
She is in many of the schools sports groups and teams.
Daisy has a fab Teacher and school support system. I'm really happy she came out of general mainstream.

Her head skull still has 3 different gaps where there is no skull bone at all.


Reports

An update on an news press article that I read online
https://www.ncbi.nlm.nih.gov/m/pubmed/7991097/?i=23&from=/3975293/related https://www.ncbi.nlm.nih.gov/m/pubmed/7991097/?i=23&from=/3975293/related

2016 March update, Single parenting!

Daisy's doing really well, still always smiling.
Her head has skin over it now, still looks weak and still opens up sometimes, but only skin deep. so its cope able.
 Her feet are still deformed (said the Doctors!) I think there rather sweet!.
Heart is good and healthy.
She has regular speech and language Therapy, she did have hearing aids but doesn't get on well with them.
Daisy goes to a main steam school, she is statemented so gets alot of extra support.
She still wears her helmet at school, she's sad that she is different, but I tell her everyone is different in there own way. Daisy is extremely confident and out going..... She's going to rule the World one day. Love her to the moon and back.... xxx

Daisys Daddy gone.....

Its been a year since her Dad walked out of her life, no contact nothing. I just don't get that.
OK., so he got a new girlfriend, new life style (late nights, well paid jobs, holidays, and teenage type parties!) but..... He wanted this child, he didn't have children when we meet 7 years ago. The child he long for and doted on.... yet he walk. Without a word, no maintenance payments, no calls, no explanation. NOTHING. Sad that.
Always by your side Daisy
Love Mummy xxx


WE ALL FIT

I'm just me., Daisy.

I wear a hat.

I have Skull bone missing and sore skin. If you like my hat please don't walk on past without asking me, just ask! I don't like being stared at like an animal. I love talking to people, and my mum finds me very comical, so come chat...

But please, just please, my hats protecting me, please stop tapping my hat and saying "Nice hat".... Tap, Tap>>

Please don't tap my hat, I know its there.. 
If I fall, help me up..
I forget to hold hands,but I run really fast...
Please Remind be before we start our journey.. tell me theres a step,a post or a dip- woops i forgot??
'Hey' you all sounds the same, fuzzy, please look at me and speak, I'll teach you to sign!
I love life, every things amazing., Please tell me if theres danger, I want to try it all  ..
I read with my feet!, strange in the libary!
So exciting., so much to do, to see, to experience ... 
'Nice hat'., just please don't tap my hat... it actually hurts
I know its there, I wear it every day....
Let me be my best,just to explore and digest... ..
teach me , please I so want to know. 
Let me see your lips,your fingers your toes..
 watch your body language, I'll feel the flow... 
Don't leave me out, Im just a kid with a hat,
Don't wanna be the left alone all on the mat!
Daisy's Mummy

Please be aware of disabilities not having labels, sorry Daisy doesn't fit the average criteria, we all different shape and sizes. 


*****A little piece I wrote, I can see what Daisy feels as her eyes roll when the World doesn't understand
*** MORAL OF MY STORY... not everythings as it looks..

Holland is beautiful this time of year too. 
Post dedicated to Kyron, We all fit.



Mortality statistics

Update of statistics, ummm, not great! http://www.ncbi.nlm.nih.gov/m/pubmed/7991097/?i=23&from=/3975293/related

Hearing aids

Daisy has now got hearing aids. Not something I was looking forward too. Since her fitting, and seeing Daisys face when she first put them in , I realised it was the best thing ever. I was so touched and emotional when Daisy heard the birds singing. I asked if she had heard them before , sadly she hadnt. Just pleased now she cn heard the small things we all take for granted. So proud of her ....