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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 ....

Daisy safe room

Sorry, i havent blogged here for ages.. Basically ive put all my time and energy into raising enough funds to build daisy her very own room. So now, here she is with her toy hover, tidying her new safe space.
I will post picture of fund raising events and the process of the building work in due corse. Its a shame the 'services' couldnt provide what was adviced by daisys doctors. Luckerly the support from everyone involved has been amazing and i will be thanking everyone personaly. But finally for now i can nip to the loo, make a tea, even chat with my other children...knowing daisy is safe in her room. ... I can breath ... Xx




Building!

We can let go of a great big release of tention. I am pleased to say that we are now in the pisition to make a deposite for the works needed to build her safe room!! We still need to raise more but its so great to get the ball rolling. Work should start this month. !!! Any volenteers needed, clear area, dig footings, tidy up, build. What ever your skills may be message me with your details if you would like to lend a hand. Thanks

DAISY FIGHTS BACK: Norfolk fire and police to do battle in the boxing ring in aid of Norwich youngster - Topix

DAISY FIGHTS BACK: Norfolk fire and police to do battle in the boxing ring in aid of Norwich youngster - Topix

Charity Giving - Kerry Ogston's Fundraising Page

 Not long now and I will be tackling the 3 peaks mountains, the biggest in the UK. Raising funds and awareness for Daisy and Adams Oliver syndrome.
Please follow the link to donate
Thanks xxxxx


Donate (How too)

Please donate with the DONATE tab link above
Thank you
Shame the OT assessing us at home ignored Doctors recomendations , and then misplaced the documents stating the Doctors advice!! Due to this Im having to fund raise to keep Daisy safe, and follow Doctors orders!!

3 peaks

Training, Great time in the gym again with Lorna in the new life styles for living studio. We had a tough hour of 1-2-1 and .... boy am I starting to feel and see the difference!
 I've lost 3lbs,   COM'OM!!
 I would never of trained like this without the 1-2-1 support from Lorna, all the diets and gym membership charges are a complete waist of money.   If I new how much it would help to have these 1-2-1's  I wish I did this years ago ...stupid fad diets...never again xx

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BINGO Yoga

 I had my second training session with Lorna Taylor today , and after my 13mile charity walk with the  Macmillian Cancer fundraisres on Friday at blinking midnight, I didnt think my body could handle much more.
   Straight after setelling Daisy back to the Hamlet centre for her morning pre-school, I wizzed to the studio to hook up with Lorna, my personal trainer. Lorna worked my for an hour.  Wow- that  girl can bend.  Yet again I feel great, I'm staring to enjoy my new fiitty life!.. Its all go,go go and I'm just ge,ge, getting on with it. Spirits are high ;-)
   Can't wait. I am really looking forward to joining a group of freestyle yoga(ers).  I've never been to Yoga for the same reasons I haven't been to BINGO!! It's a shame, Both have potentuaky good results. Its just.......  creeking _ farting _ floor boards _ bingo wings    ..... springs to mind!    However this Freestyle Yoga sounds like its got a bit of funk. http://www.lifestylesforliving.co.uk/Pages/FreestyleFitnessYoga.aspx  No wales, tropical earthy music involved. No chanting or humming either , I'm really ejoying getting fit, I never thought I'd hear myself say it! Its just finding what suits me and my lifestyle best and finding the right people who have the specialist knowledge on how to adapt this to benefit you mentaly , and physically.
  

Any Efforts?

Its Saturday.
 Last night at Midnight I joined around 600 hundred people in Norwich for the 7th Starlight walk in aid of Macmillan Cancer Support of 13 Miles.  We walked around the Norwich Ring Road in the dark until the early morning light! 
  This being my longest walk ever. I didn't know if I would be able to stride 2 miles. 
We walked, We talked Blister ........        and ........           4.15 hours later I finally reach the end...!!!!..

  1.  Do I feel good?                  Not really! 
  2. Was it worth it?                  Yes!
  3.  Did I raise much?               Not really! 
  4. Will it make a difference?    Yes! 
  5. Would I do it again?           Yes!


http://www.starlightwalknorwich.co.uk/index.php

                The morel of my walk.........
                          ' Any Effort Helps '
Macmillan Cancer Support registered charity number 261017