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.
Showing posts with label Links. Show all posts
Showing posts with label Links. Show all posts
Mortality statistics
Update of statistics, ummm, not great!
http://www.ncbi.nlm.nih.gov/m/pubmed/7991097/?i=23&from=/3975293/related
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 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!
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
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!
its OK, still ALIVE >>
mORNIMG
Well I missed my own childs halloween event, rarrr, I wasnt loooking good, kinda proped on the lav armed with bucket... really needed my mummy!!! so havent a clue how the night went?? will find out soon though x
Just trying to sort all my facts and figures, servises policys and political papers with disabled persons rights, human rights and enviroment health, health and safty,legissaltions , you know all the general day to day paper file banter that the mother of a disabled child has to become accustom too. what aload of shit!!
I used to use my desk to play cards on now Ive forgot I have a desk, I cant even sit my computer on there, missed appointments, old new appointments are flittering away, under paper file banter ...
As i explained the housing wouldnt do what was aggreed at the last key worker meeter, 2 weeks she said, oh yes defo 2 weeks and 3rd assesment will be done, report in the post ready for next met! twat!, can i say that? yer, its my blog!
O well daughters life still at risk every day that little bit more, a new corner she can reach a new side she can shuffle, a new whatever.... theres always the areas that im ok with the old that were ok and now the new, theses kids grow you see, they move around like crazy bezz, buzzing and flowering pollen. except thats daisy and my pots and pans! its cool though her short limbs dont give her the strenght to lift the pot and get the handle mushed in her brain, also her little undeveloped hands cant rip easy. as long as she doesnt fall on it its pretty fun, although she does fall easy said the doctors because oh yes she got half her fucking feet missing wearing size 2 (1 is newborn) padder shoes.
Seriously im thinking of taking this bad boy all the way, as if your leaving my 1 year old daughter whom has apneoa, a heart defect, still has (9cm x 9cm) of her skull missing that aint going to grow over night/weeks/months/years!! as if your letting me sit here at night stressing over this housing shit. Insteaed of getting my zzzzzzz. you arseholes, yes im going for the big one,I think you call it flight of fight???? Im not Miss.KO for nothing ...sonny gim (gim, whos that?) you can call me Kerry.
So here we are extremly overcrowed now, daisy still only has the area of a travel cot to sleep in, thats about to tip any day, obviosly i cant attach this to hard surround as half my babys heads missing, just incase you forgot mr,mrs,caught in the stock cash crash or whatever that britain hicup was.... recession, was that it?, sorry i dont do politics, tax slash, i dont even do the lottery!,nor nurrfin coz i just sit on my 2metre x 2 metre mat watching jezza (every1 loves the jez) with my not normal for norfolk bright eyed bushy tailed (thats a joke no tails so far) daughter in arms reach stoping her move in case her Life threaterning dissability becomes life threaterning. And other that that she sits in the fucking trolly thing, buggy and climbs out of it of corse because shes a fiesty little sod that isnt being keep down by nothing. that child is going to life the fullest life ever, with the happiest of happynest family around her, learning and playing with kyron and izzy as there grow and blossoms together. I havent done alot of things by the book in the past, 3 kids,a few dads, no weddings, seen more funerals so far, and I know I havent done alot with my life, total let down (sorry mum/dad what i put u though!)but if I die , in hundreds of years to come, knowing that I done my best to keep all my 3 children safe, healthy any happy till before and after the crossing then i will RIP.. PRAISE THE LORD AMEN.
as any mother would, agree. ???
so please forgive me for telling it again to my local services, and all you support network fingys...er like local councils, or housing departments though this blog as they dont answer the calls, and when they do they 'put me though' this stupid council that my daughter has rare needs the last 2 OT's couldnt and the next cannot Generalize with, of familarize, or sympathazize, or empathize, or even imaginathize with, so i'll tell you, your goverments sites (ie NHS) state 'risk of injury to toddles increases greatly' when .......what for it.......YES........moving home, or parents stressed or overcrowded.... etc....etc... or ect.....ect.... i cant even ride a tractor..... and even i know that.
So hers daisys overcrowed, yep, tick......... clock still sticks.......... every second you are risking my daughters life............ that make you feel good............... you got the power you win....... now, can you get this extension on the go, coz I dont wanna risk my daughters life any longer by waiting...... any longer... or having another waisting time bantering metting even my peadiatrition thinks its a waist of time, if he can sit out the next metting can I...??
I know ..... i'll bring my blind, death, mad antie marion , she can take my place, you wont even know shes there as she dead, but thats ok, as know one hears or listens or acts on daisys needs anyway, and what i hear ive heard all before. we were ofered a wonderfull move a house, a clean, a decorate, a help to move.... well that wasnt strickly true, we were so were the doctors assured of all this, but the bidding department (low need, moderate,high,emergency,on your are need) couldnt up the banding (home options) as know none of the doctors said daisy was safe to move. they said it was on the grounds of conflicting medical reports,,, basically the ot said yer move em, up the band... but home option studied and i have it in writing banded me on the basics of daisys medical reports as they would have to in the intrest of health, enviroment, housing ect, thats what the assesments for ,yer...medical!!!!! but they said sorry on seeing all the medical reports we regreat to inform you that you are still LOW NEED TO MOVE>>>> THAT IS YOUR BAND>>>> oh, ok, so they didnt even budge 1 notch...o maybe these doctors might know what there talking about.... swollow your dummy, put your tail between your legs and quit your job luv,,,, coz your rusty......As IF IM still bantering this shit..... for fucks sake....
JEZZA OF PHIL N FERN ??? no its holly, isnt it now!!.... mark will well want to know all about daisys goings on now, if we visit Holly, spose little Jon will want to come too, move over Dad, thats an outing in the pipeline!!... Private joke..... back to medical reports...... the only conflicting medical report was there own, from the housings adult OT that doesnt even seem to have a copy of the local councils DFG policey that i have repeatedly asked her for.
CHRISTMAS CAKES XX
I will move home mr and mrs goverment if...... a doctor tells me I would not be putting my daughter at graeter risk that any other child. But we already know every day my daughter is at greater risk that any other child, as stated in all any many recent reports my toddle is at risk of seriors brain turmour or worse more so that any normal child!!!! because.....wait for it........YES she has a large part of her skull missing..... thats a cranium, you know protective compact tissue, thats is a compound of solid hard, robust bone, proable the strongest bone in the body to....guess what.... yep, fuck your clever tonight....to protect your brain.... a little childs brain, a 1 years old brain my daisys brain....... and no straping her in a buggy is going to protect her for longer that she wants and she has had enough, we want to eat , poo, play, sleep, and do normal things, in a normals size room no frills, i'll do that myself.....fuck waiting for services on that 1..!!!! so yer, when your readdy. counncilliarrrrr...........
Please dont be alarmed I think ive zigzaged myself straight if thats poss hahahaha xx
Well I missed my own childs halloween event, rarrr, I wasnt loooking good, kinda proped on the lav armed with bucket... really needed my mummy!!! so havent a clue how the night went?? will find out soon though x
Just trying to sort all my facts and figures, servises policys and political papers with disabled persons rights, human rights and enviroment health, health and safty,legissaltions , you know all the general day to day paper file banter that the mother of a disabled child has to become accustom too. what aload of shit!!
I used to use my desk to play cards on now Ive forgot I have a desk, I cant even sit my computer on there, missed appointments, old new appointments are flittering away, under paper file banter ...
As i explained the housing wouldnt do what was aggreed at the last key worker meeter, 2 weeks she said, oh yes defo 2 weeks and 3rd assesment will be done, report in the post ready for next met! twat!, can i say that? yer, its my blog!
O well daughters life still at risk every day that little bit more, a new corner she can reach a new side she can shuffle, a new whatever.... theres always the areas that im ok with the old that were ok and now the new, theses kids grow you see, they move around like crazy bezz, buzzing and flowering pollen. except thats daisy and my pots and pans! its cool though her short limbs dont give her the strenght to lift the pot and get the handle mushed in her brain, also her little undeveloped hands cant rip easy. as long as she doesnt fall on it its pretty fun, although she does fall easy said the doctors because oh yes she got half her fucking feet missing wearing size 2 (1 is newborn) padder shoes.
Seriously im thinking of taking this bad boy all the way, as if your leaving my 1 year old daughter whom has apneoa, a heart defect, still has (9cm x 9cm) of her skull missing that aint going to grow over night/weeks/months/years!! as if your letting me sit here at night stressing over this housing shit. Insteaed of getting my zzzzzzz. you arseholes, yes im going for the big one,I think you call it flight of fight???? Im not Miss.KO for nothing ...sonny gim (gim, whos that?) you can call me Kerry.
So here we are extremly overcrowed now, daisy still only has the area of a travel cot to sleep in, thats about to tip any day, obviosly i cant attach this to hard surround as half my babys heads missing, just incase you forgot mr,mrs,caught in the stock cash crash or whatever that britain hicup was.... recession, was that it?, sorry i dont do politics, tax slash, i dont even do the lottery!,nor nurrfin coz i just sit on my 2metre x 2 metre mat watching jezza (every1 loves the jez) with my not normal for norfolk bright eyed bushy tailed (thats a joke no tails so far) daughter in arms reach stoping her move in case her Life threaterning dissability becomes life threaterning. And other that that she sits in the fucking trolly thing, buggy and climbs out of it of corse because shes a fiesty little sod that isnt being keep down by nothing. that child is going to life the fullest life ever, with the happiest of happynest family around her, learning and playing with kyron and izzy as there grow and blossoms together. I havent done alot of things by the book in the past, 3 kids,a few dads, no weddings, seen more funerals so far, and I know I havent done alot with my life, total let down (sorry mum/dad what i put u though!)but if I die , in hundreds of years to come, knowing that I done my best to keep all my 3 children safe, healthy any happy till before and after the crossing then i will RIP.. PRAISE THE LORD AMEN.
as any mother would, agree. ???
so please forgive me for telling it again to my local services, and all you support network fingys...er like local councils, or housing departments though this blog as they dont answer the calls, and when they do they 'put me though' this stupid council that my daughter has rare needs the last 2 OT's couldnt and the next cannot Generalize with, of familarize, or sympathazize, or empathize, or even imaginathize with, so i'll tell you, your goverments sites (ie NHS) state 'risk of injury to toddles increases greatly' when .......what for it.......YES........moving home, or parents stressed or overcrowded.... etc....etc... or ect.....ect.... i cant even ride a tractor..... and even i know that.
So hers daisys overcrowed, yep, tick......... clock still sticks.......... every second you are risking my daughters life............ that make you feel good............... you got the power you win....... now, can you get this extension on the go, coz I dont wanna risk my daughters life any longer by waiting...... any longer... or having another waisting time bantering metting even my peadiatrition thinks its a waist of time, if he can sit out the next metting can I...??
I know ..... i'll bring my blind, death, mad antie marion , she can take my place, you wont even know shes there as she dead, but thats ok, as know one hears or listens or acts on daisys needs anyway, and what i hear ive heard all before. we were ofered a wonderfull move a house, a clean, a decorate, a help to move.... well that wasnt strickly true, we were so were the doctors assured of all this, but the bidding department (low need, moderate,high,emergency,on your are need) couldnt up the banding (home options) as know none of the doctors said daisy was safe to move. they said it was on the grounds of conflicting medical reports,,, basically the ot said yer move em, up the band... but home option studied and i have it in writing banded me on the basics of daisys medical reports as they would have to in the intrest of health, enviroment, housing ect, thats what the assesments for ,yer...medical!!!!! but they said sorry on seeing all the medical reports we regreat to inform you that you are still LOW NEED TO MOVE>>>> THAT IS YOUR BAND>>>> oh, ok, so they didnt even budge 1 notch...o maybe these doctors might know what there talking about.... swollow your dummy, put your tail between your legs and quit your job luv,,,, coz your rusty......As IF IM still bantering this shit..... for fucks sake....
JEZZA OF PHIL N FERN ??? no its holly, isnt it now!!.... mark will well want to know all about daisys goings on now, if we visit Holly, spose little Jon will want to come too, move over Dad, thats an outing in the pipeline!!... Private joke..... back to medical reports...... the only conflicting medical report was there own, from the housings adult OT that doesnt even seem to have a copy of the local councils DFG policey that i have repeatedly asked her for.
CHRISTMAS CAKES XX
I will move home mr and mrs goverment if...... a doctor tells me I would not be putting my daughter at graeter risk that any other child. But we already know every day my daughter is at greater risk that any other child, as stated in all any many recent reports my toddle is at risk of seriors brain turmour or worse more so that any normal child!!!! because.....wait for it........YES she has a large part of her skull missing..... thats a cranium, you know protective compact tissue, thats is a compound of solid hard, robust bone, proable the strongest bone in the body to....guess what.... yep, fuck your clever tonight....to protect your brain.... a little childs brain, a 1 years old brain my daisys brain....... and no straping her in a buggy is going to protect her for longer that she wants and she has had enough, we want to eat , poo, play, sleep, and do normal things, in a normals size room no frills, i'll do that myself.....fuck waiting for services on that 1..!!!! so yer, when your readdy. counncilliarrrrr...........
Housing
OK, lets get a few things in order, this page is for anyone who is involved in the local authority housing issue that my family have, well its like this
Thank you to the kind letter hat the OT wrote some time ago to many doctors explaining that there was an offer of a 4 bedroom house to be made, and that this magic house would be sterile clean and help with a move would be offered, it was a very nice letter, and after the extensive follow up of the OT persistently phoning to get replies on this letter and weather they now understood the dust building work would course, like they never considered this before(as the OTs letter suggests) durrrr!!, dust. Well they got 2 replies neither fully supporting the move to the magic 4bedroom house. Ive yet to see this magic 4 bedroom house, it must be top secret, either that or complete bullshit. My banding on the home option site,,,,is low need, and this is since the bidding department were shown all the medical info, that i took to them personally as the OT didn't produce these, even after agreeing she would, and also didn't return there calls, strange,..... maybe because they don't match the story of 'yep safe to move, get the four bedroom magic house out! Ive had no offer of a 4bedroomed house, its been mentioned but no offered. Daisys health and Daisys best interest also the family's, support the family to adapt the home, as advised by many professionals, with no nagging letter or constant follow up calls(as the OT had). I have many letters suggesting the need to adapt our home rather than to move to meet the needs of Daisy. These original letters that have now turned in to unimportant statements have just been ignored. OK its like this, i can not care for daisy and move, she is now in my arms or holding my hand from the minute she awakes to the minute she falls asleep.
The local councils lack of support in getting a assessment of housing needs, advice, and manner in which my case has been dealt is out rigours. Ive had to beg for an assessment, then reports, was told i couldn't obtain a second opinion,was even told the doctors letters had all been retracted, what complete crap!!
OK its like this, i can not care for daisy and move, she is now in my arms or holding my hand from the minute she awakes to the minute she falls asleep. Its 2am, I've just eaten my microwave burger dinner, very healthy not!
Marks has work at 5am he gets up, yet hes crashed on the settee with his neck bent as ever. The other kids tucked themselves in bed, and daisy came shopping with me, whilst in there we done our usual trip to the medic room as daisy refused to wear her hat and was insisting on poking her fingers deep in her head. we even have our own supplies there now, and private room!!. i was home at around 9pm, bigger kids rummaged in the bags for there treats as always, on a shopping trip.
About 10pm i settled them down with drinks and snacks, windows open, air conditioning would be nice...hot,hot,hot. Daisy , well mark done the dad thing and feed her aload of crap, so i cleaned, changed set her up for the night. mark tucked her in about 10.30... 10.45 shes asleep. washed up the dinner stuff, then proceeded to get the bulk of the shopping in, this is everything as we don't do clothes shops and rarely go to town. so by 12pm its a mess, but its all squashed in the cupboards. 12.30 i get a cup of cold tea, and i can open the morning mail, yesterdays!. now after finding the dongle and messing around to get connected I'm finally here, so this is why i haven't been here of late zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz
I just want daisy to have somewhere to sleep and play where shes not at risk of damaging her brain as she still has skull missing, it didn't grow last night, fingers crossed for tonight.x
I'LL BE BACK xxxxxxxxxx
PS. ... the local PM has even vanished, unless i missed the return call, please come back, you where my last bit of hope.PLEASE call us
I just want daisy to have somewhere to sleep and play where shes not at risk of damaging her brain as she still has skull missing, it didn't grow last night, fingers crossed for tonight.x
Thank you to the kind letter hat the OT wrote some time ago to many doctors explaining that there was an offer of a 4 bedroom house to be made, and that this magic house would be sterile clean and help with a move would be offered, it was a very nice letter, and after the extensive follow up of the OT persistently phoning to get replies on this letter and weather they now understood the dust building work would course, like they never considered this before(as the OTs letter suggests) durrrr!!, dust. Well they got 2 replies neither fully supporting the move to the magic 4bedroom house. Ive yet to see this magic 4 bedroom house, it must be top secret, either that or complete bullshit. My banding on the home option site,,,,is low need, and this is since the bidding department were shown all the medical info, that i took to them personally as the OT didn't produce these, even after agreeing she would, and also didn't return there calls, strange,..... maybe because they don't match the story of 'yep safe to move, get the four bedroom magic house out! Ive had no offer of a 4bedroomed house, its been mentioned but no offered. Daisys health and Daisys best interest also the family's, support the family to adapt the home, as advised by many professionals, with no nagging letter or constant follow up calls(as the OT had). I have many letters suggesting the need to adapt our home rather than to move to meet the needs of Daisy. These original letters that have now turned in to unimportant statements have just been ignored. OK its like this, i can not care for daisy and move, she is now in my arms or holding my hand from the minute she awakes to the minute she falls asleep.
The local councils lack of support in getting a assessment of housing needs, advice, and manner in which my case has been dealt is out rigours. Ive had to beg for an assessment, then reports, was told i couldn't obtain a second opinion,was even told the doctors letters had all been retracted, what complete crap!!
OK its like this, i can not care for daisy and move, she is now in my arms or holding my hand from the minute she awakes to the minute she falls asleep. Its 2am, I've just eaten my microwave burger dinner, very healthy not!
Marks has work at 5am he gets up, yet hes crashed on the settee with his neck bent as ever. The other kids tucked themselves in bed, and daisy came shopping with me, whilst in there we done our usual trip to the medic room as daisy refused to wear her hat and was insisting on poking her fingers deep in her head. we even have our own supplies there now, and private room!!. i was home at around 9pm, bigger kids rummaged in the bags for there treats as always, on a shopping trip.
About 10pm i settled them down with drinks and snacks, windows open, air conditioning would be nice...hot,hot,hot. Daisy , well mark done the dad thing and feed her aload of crap, so i cleaned, changed set her up for the night. mark tucked her in about 10.30... 10.45 shes asleep. washed up the dinner stuff, then proceeded to get the bulk of the shopping in, this is everything as we don't do clothes shops and rarely go to town. so by 12pm its a mess, but its all squashed in the cupboards. 12.30 i get a cup of cold tea, and i can open the morning mail, yesterdays!. now after finding the dongle and messing around to get connected I'm finally here, so this is why i haven't been here of late zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz
I just want daisy to have somewhere to sleep and play where shes not at risk of damaging her brain as she still has skull missing, it didn't grow last night, fingers crossed for tonight.x
I'LL BE BACK xxxxxxxxxx
PS. ... the local PM has even vanished, unless i missed the return call, please come back, you where my last bit of hope.PLEASE call us
I just want daisy to have somewhere to sleep and play where shes not at risk of damaging her brain as she still has skull missing, it didn't grow last night, fingers crossed for tonight.x
AOS and MAP
Often people contact me from all over the World sending Daisy and our family words of positive support. Theses words general reach us when I'm at breaking point or when Daisy has had a Low/Slump in her Health.
On days everything is going great, smoothly, then, before you get a chance to realise its all going so good .... a change of path kicks in.
This, For over 2 years has become our Families most common barely functional routine -
Few weeks up ~ few weeks down ~ Who knows ??
Eye infections, Apnoea attacks, febrile convulsions, chicken pox, septicaemia, infections of the blood, random skin infections , medications, MRIs, CAT scans, Specialists, specialist hospitals, we just never know and are never prepared for tomorrow.
This is where my sense of spontaneity's , lack of forward planning, great UNorganisation, and ability to go days without personal care or knowledge of where I'm sleeping, eating even going too next comes in!
Its a real bonus being able to carry my life in a small bag filled with Daisy's paper work, telephone numbers and continue to function in a normal is normal gets manner. Its MOTHER F****** auto pilot.
As I grew up, I always envied Mum more and more with the way she regularly juggled life so well.
OMG! WTF! LMFAO! Fucking
Get the MAP out ~ MOTHER^AUTO PILOT !
I'm on the MAP, PAM (My mums name is Pamela)
Note to oneself-
Never visit my mum for sympathy you'd get 'Oh well' or just 'ooo' - There is was No long conclusions, evaluations or time to dwell, contemplate. No ifs or butts... Just KEEP CALM AND CARRY ON attitude.. That is one of the greatest attributes my Mother has given me. Its got me this far
Searching the Internet and I am slowly contacting chatting to other Families, Individuals and knowledgeable professionals alike, that have links or an interest with AOS (Adams Oliver Syndrome). Its not nice to know that others have gone, or are going though all the worry and the extreme emotion that my family have and are experiencing. My only hope is as we find each other we can share blood,sweat and tears. Be there when times are tough and advise, cross-reference on the little information that we get from our Medical Professions involved.
Please add any comments (on the comment form) you like and it will post below.
Links of any information you feel others may benefit with, are always wanted again greatly received.
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