Daisy was born with a rare genetic Birth Defect. Adams Oliver Syndrome. As a mum, I share our lives in this blog. Thanks for your support.
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
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
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
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
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.
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...!!!!..
http://www.starlightwalknorwich.co.uk/index.php
The morel of my walk.........
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...!!!!..
- Do I feel good? Not really!
- Was it worth it? Yes!
- Did I raise much? Not really!
- Will it make a difference? Yes!
- 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
Accidents
Accidents to Children
Accidental injuries are a major health problem throughout the United Kingdom. They are the most common cause of death in children over one year of age. Every year they leave many thousands permanently disabled or disfigured.
More than one million children under the age of 15 experience accidents in and around the home every year, for which they are taken to accident and emergency units. Many more are treated by GPs and by parents and carers.
Those most at risk from a home accident are the 0-4 years age group. Falls account for the majority of non-fatal accidents. Most of these accidents are preventable through increased awareness, improvements in the home environment and greater product safety.
(ROSPA) C:\Users\kerry\Documents\Accidents to Children Child Safety Advice & Information Home Safety RoSPA.htm
3 Peaks !!!
Ive been so concern about training for this 3peaks challenge. I really do no exercise and only eat muesli and chocolate, i drink way to much coffee too.
Thank you to Lorna from Life style for living lifestylesforliving.co.uk, Body Rush gym in Norwich - I now have a personal trainer. Lorna understands that I need serious help with my fitness and has offered to help me, she read my blog and offered to help. I was touched at the consultation that this has been offered for free.
I can actually see me getting fit!! I cannot wish for better, apparently my happy levels will rise ..
watch this space. xx
Thank you to Lorna from Life style for living lifestylesforliving.co.uk, Body Rush gym in Norwich - I now have a personal trainer. Lorna understands that I need serious help with my fitness and has offered to help me, she read my blog and offered to help. I was touched at the consultation that this has been offered for free.
I can actually see me getting fit!! I cannot wish for better, apparently my happy levels will rise ..
3 Peaks Challenge
OK, LETS DO IT ANYWAY a local charity have team up with us to help raise the rest of the funds for a safe room. http://www.letsdoitanyway.com/projects.html (Please see project 4)
After the 999 night supported by TOE TO TOE boxing club and premier sports event raised so much for The 'Daisy Chain fund'. We hoped to raise £4000 to provide Daisy with a boxed in bed that would contain Daisy safely, be padded and stop any roaming around at night, and also let her sleep and wriggle around knowing she couldn't damage her head that still has, and will always have, a large piece of Skull missing.
As the funding efforts went so well on the 999 night (Police Vs Firecrew in the ring) and the local support from everyone who attended not to mention the donations made , We raised around £7000. Thank you to everyone who attended and the great support.
Due to the success of the 999 Night, we can now go that little step further ...... and forget the bed ..... With more of a boost for funds Daisy can have a well deserved room, fully adapted to suit her disability, defect of additional need (however you like to word it?!?)
Due to the success of the 999 Night, we can now go that little step further ...... and forget the bed ..... With more of a boost for funds Daisy can have a well deserved room, fully adapted to suit her disability, defect of additional need (however you like to word it?!?)
With this room Daisy could sleep, play, grow, read, dress and self develop in at least 1 room of the home. The family can relax knowing that she is safe and furnishing within her room not be restricting for her (as a boxed in bed would), or make her feel like a dog in a cage she will feel like any other child, with subtle adaptations to furniture and fittings , she wont even know its her safe room.... I cant wait!
So join me know and sign up with facebook page letsdoitawyway and lets peak to the target amount and sort this once and for all.
Please note- I am a very unfit 32 year old, I walk to my car and that's about all the exercise I've done in the last 10 years... therefore there are NO excuses if I can do it anyone can!!!!!
Read on for the 3 Peak challenge
Join Charity Lets Do It Anyway for One of the most famous & rewarding mountain challenges in the UK & raise funds for Daisy.....
If I can do it anyone can!!!....https://www.facebook.com/#!/events/329562167069819/
In September 2012 Lets Do It Anyway will be taking a group of supporters to complete the highest British three peaks, to raise funds ...for 3 year old, 'Daisy Ogston's 'Daisy Chain Fund' which will contribute to buying urgently needed Safe Space. Please checkout http://
Daisy is a beautiful three year old girl, who has a rare genetic disorder, Adams-Oliver Syndrome(AOS). Her symptoms include having Skull and skin missing, abnormal feet/hands and and Heart defect. Her parents aim is to keep her alive, healthy and happy, which means they desperately need to raise funds for a safe play area and bedroom. They have been doing great with fund raising, however, they would like a help-in -hand, so 'Lets Do It Anyway' is offering to help raise the final £5000 required!
The challenge:
To climb & summit the three highest mountains in the UK, which are Ben Nevis (in Scotland), Scafell Pike (in England) & Snowdon (in Wales). That’s 10,000 feet of climbing, which is... approximately 25 miles. A great charity group challenge & a fantastic achievement, never to be forgotten!
MORE INFO HERE -https://www.facebook.com/#!/events/329562167069819/Daisy is a beautiful three year old girl, who has a rare genetic disorder, Adams-Oliver Syndrome(AOS). Her symptoms include having Skull and skin missing, abnormal feet/hands and and Heart defect. Her parents aim is to keep her alive, healthy and happy, which means they desperately need to raise funds for a safe play area and bedroom. They have been doing great with fund raising, however, they would like a help-in -hand, so 'Lets Do It Anyway' is offering to help raise the final £5000 required!
The challenge:
To climb & summit the three highest mountains in the UK, which are Ben Nevis (in Scotland), Scafell Pike (in England) & Snowdon (in Wales). That’s 10,000 feet of climbing, which is... approximately 25 miles. A great charity group challenge & a fantastic achievement, never to be forgotten!
AOS and Comedy
If the video above does't load, please click the link above.
A comedian who jokes she has a plate in her head, is short, and 1 tit bigger than the other..!!.
Katrina is diagnosised with Adams Oliver syndrom.
I'm so please she contacted me, really positive lady x
Craniofacial Surgery
Daisy will have to undergo complex reconstruction surgery.
I don't think I will ever come to terms with this.
Daisy Craniofacial Surgeon sent the report from our recent visit to GOSH , I gulped as i read the words ' she will have formal calvarial reconstruction but as yet the skin is too thin and the calvarial one is insufficiently developed to consider this'.
Here is a link to his web page www.daviddunaway.co.uk I'm proud to say he is know as one of the top ten Surgeons in the World.! As yet I cannot find any information on the operation, (take a breath..... and another....)
OK, right well
We are now waiting for Daisy Skull bone to mature to its greatest density. (thickness) . The bone defect (area of NO skull) has closed as ,much as it will. Now Daisy is left with aprox 7cm X 6cm of head area not protected by Bone. The open area is where you would expect a babies soft spot to be. Not the est of places, probably the worse area of head to leave unprotected. On the top of our heads is the main Blood vessel that carries Blood and Oxygen to the Brain, It feeds our Brain. Without this, or if there was a problem with this major Vessel we would be Brain damaged, Or Dead. If this main Blood Vessel gets torn or rupture the complication would be hemorage probably coursing instant Death.
Most of the body has muscle surrounding any bones, our heads however, do not. Its simply scalp, thin fatty tissue and Skull Bone and the Brain Dura matter (outer Brain) Our Brains are protected completely by compound (compressed, strong) Bone. Most Head and Skull defects are life thretenting and general need many life risking operations to prevent further complication. Daisy has a Skull defect the only 1 doctor we have spoken to has ever seen before. I'm not sure if Daisy Surgeon has perform this operation before, this is my top question on our next appointment to GOSH.
Daisy Bone density with not be at its greatest until she reaches 7/8 years old. We will probably just be waiting for the scalp to be ready for an operation. At the moment she has a layer of weak, unhealthy thin skin. The skin on our head is the strongest in the body, thicker than any where else. Again as the rain needs extra protection. To break the skin on our heads is fairly difficult. More so is the Skull.
Daisy's Skin may never be strong enough to help hold the bone in place after reconstruction surgery. Time will tell. There will be a high risk with Daisy skin that the surgery will fail. As it has done before in other operations that children with Adams-Oliver Syndrome have had. I've yet to read how great the surgery was from any information on the net. With patients that have a the Bone defect as well as the scalp (Skin)
Now my head is spinning, I will continue again soon, now i must cuddle my half asleep man xxx
I don't think I will ever come to terms with this.
Daisy Craniofacial Surgeon sent the report from our recent visit to GOSH , I gulped as i read the words ' she will have formal calvarial reconstruction but as yet the skin is too thin and the calvarial one is insufficiently developed to consider this'.
Here is a link to his web page www.daviddunaway.co.uk I'm proud to say he is know as one of the top ten Surgeons in the World.! As yet I cannot find any information on the operation, (take a breath..... and another....)
OK, right well
We are now waiting for Daisy Skull bone to mature to its greatest density. (thickness) . The bone defect (area of NO skull) has closed as ,much as it will. Now Daisy is left with aprox 7cm X 6cm of head area not protected by Bone. The open area is where you would expect a babies soft spot to be. Not the est of places, probably the worse area of head to leave unprotected. On the top of our heads is the main Blood vessel that carries Blood and Oxygen to the Brain, It feeds our Brain. Without this, or if there was a problem with this major Vessel we would be Brain damaged, Or Dead. If this main Blood Vessel gets torn or rupture the complication would be hemorage probably coursing instant Death.
Most of the body has muscle surrounding any bones, our heads however, do not. Its simply scalp, thin fatty tissue and Skull Bone and the Brain Dura matter (outer Brain) Our Brains are protected completely by compound (compressed, strong) Bone. Most Head and Skull defects are life thretenting and general need many life risking operations to prevent further complication. Daisy has a Skull defect the only 1 doctor we have spoken to has ever seen before. I'm not sure if Daisy Surgeon has perform this operation before, this is my top question on our next appointment to GOSH.
Daisy Bone density with not be at its greatest until she reaches 7/8 years old. We will probably just be waiting for the scalp to be ready for an operation. At the moment she has a layer of weak, unhealthy thin skin. The skin on our head is the strongest in the body, thicker than any where else. Again as the rain needs extra protection. To break the skin on our heads is fairly difficult. More so is the Skull.
Daisy's Skin may never be strong enough to help hold the bone in place after reconstruction surgery. Time will tell. There will be a high risk with Daisy skin that the surgery will fail. As it has done before in other operations that children with Adams-Oliver Syndrome have had. I've yet to read how great the surgery was from any information on the net. With patients that have a the Bone defect as well as the scalp (Skin)
Now my head is spinning, I will continue again soon, now i must cuddle my half asleep man xxx
Better and better
Finally
I feel like I'm getting there.
Thanks to everyone that support and took park in the boxing, it was a great success.
I feel like I'm getting there.
Thanks to everyone that support and took park in the boxing, it was a great success.
Daisy enjoyed the night.
Norfolk County Council lose private medical documents
The kids school attendance are both poor. My house is cramped, over crowded and cluttered.
We cant move as after the home option team assessed our family with consideration of Daisys medical needs they could not up our band. We are on low need banding. The doctors stated and supported the view to adapt the current property rather that to move to a 4 bedroom, this would be more suited for daisys com plex additional needs!
Daisys lost medical file has been lost by the original Norfolk County Council (Adults Services) Occupational Therapist. The LOST MEDICAL FILE contained all the data that Home options focused there assessment on. All the doctors letters and reports claimed Daisy needs her own room for safety reasons, to adapt the current property under the Disabled Facilities Grant would be far more safer , suitable and recommended in there medical professional opinion.
The OT that LOST daisys medical file forgot to log the file, or take duplicates from the file, yet she managed to gather all daisys doctors addresses and names and contact details!!, amazing eh, The OT also fail to tell anyone she lost my daughters file, this file contained Daisys Birth certificate!! I only know on reading it from the information my father obtained for me via freedom of information act.
WTF!!!
We cant move as after the home option team assessed our family with consideration of Daisys medical needs they could not up our band. We are on low need banding. The doctors stated and supported the view to adapt the current property rather that to move to a 4 bedroom, this would be more suited for daisys com plex additional needs!
Daisys lost medical file has been lost by the original Norfolk County Council (Adults Services) Occupational Therapist. The LOST MEDICAL FILE contained all the data that Home options focused there assessment on. All the doctors letters and reports claimed Daisy needs her own room for safety reasons, to adapt the current property under the Disabled Facilities Grant would be far more safer , suitable and recommended in there medical professional opinion.
The OT that LOST daisys medical file forgot to log the file, or take duplicates from the file, yet she managed to gather all daisys doctors addresses and names and contact details!!, amazing eh, The OT also fail to tell anyone she lost my daughters file, this file contained Daisys Birth certificate!! I only know on reading it from the information my father obtained for me via freedom of information act.
WTF!!!
Daisys shoes
Daisy has collected her new shoes from Hospital, they are very stiff. Hopefully they will help her wonky walk!
Daisy likes them as they are pink.
They are specially made with hard tongues, and support around the heel and up the ankle, surprisingly they are not that heavier. :-)
Daisy likes them as they are pink.
They are specially made with hard tongues, and support around the heel and up the ankle, surprisingly they are not that heavier. :-)
New Shoes
Daisy has been measured up for some http://piedrotherapy.com/children.asp?id=2 , Piedro boots from the Orthotic department , We hope these we improve her balance and walking ability. We have bright pink on order!
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