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.
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!
More minutes in day
OMG! I don't feel like I've stoped.
Firstly,Congratulation to my Coz's (cousin) Ross who has just had a baby girl, not him himself,NOW that would be clever! Well done Emma, welcome to mother hood. Just awaiting the little scotty now ... babies,babies. As for Kel, well alright for you chilling on the Oz beach, bliss..x
Well the Halloween party went ahead, i missed this , as i was sick as a pig. I think it done well, and raised £100, odd, i hope everyone dressed up? sorry i wasn't there.
The next goings on is 3rd of December, at the Jubilee Centre, NORWICH a good ole jumble sale, starts at 10am-`12pm, any sell able donations please bring on the day. I will be there, will all my jumble.
Well Daisys doing good, she has different things going on most mornings, we have sadly overlapped with our Musical keys. This is most upsetting for me, i don't know how Daisy feels about it, but I'm sure she would love it if we could manage a jam session again.
We had our 3rd home assessment via the Councils OT, .... say no more!
Daisys is still in mine and Marks room in her travel cot that she has now reached the max height for and nearly reaching the max weight for, we are still raising funds for her bed, where her bed will go, i have no idea. I think this is bed is going to be a hands on job, for the right Wo/Man.
As for moving from our local authority home , that's pretty imposable as we are still on 'low banding' on the gnhomeoption site.
must sleep, night all xxx
Firstly,Congratulation to my Coz's (cousin) Ross who has just had a baby girl, not him himself,NOW that would be clever! Well done Emma, welcome to mother hood. Just awaiting the little scotty now ... babies,babies. As for Kel, well alright for you chilling on the Oz beach, bliss..x
Well the Halloween party went ahead, i missed this , as i was sick as a pig. I think it done well, and raised £100, odd, i hope everyone dressed up? sorry i wasn't there.
The next goings on is 3rd of December, at the Jubilee Centre, NORWICH a good ole jumble sale, starts at 10am-`12pm, any sell able donations please bring on the day. I will be there, will all my jumble.
Well Daisys doing good, she has different things going on most mornings, we have sadly overlapped with our Musical keys. This is most upsetting for me, i don't know how Daisy feels about it, but I'm sure she would love it if we could manage a jam session again.
We had our 3rd home assessment via the Councils OT, .... say no more!
Daisys is still in mine and Marks room in her travel cot that she has now reached the max height for and nearly reaching the max weight for, we are still raising funds for her bed, where her bed will go, i have no idea. I think this is bed is going to be a hands on job, for the right Wo/Man.
As for moving from our local authority home , that's pretty imposable as we are still on 'low banding' on the gnhomeoption site.
must sleep, night all xxx
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...........
Harvest Festival
What a hot day today, celebrating Harvest festival at Izzy's school, with Home made soup, and fresh bread. There we all sat on the field kids parents, teachers, sun shining.
OOO poor Daisy gets hot and sweaty, and over heats in her helmet .........(she always wears it now when collecting the kids, as it gets hectic, more so as she wants to walk everywhere now!) Id rather be safe than sorry here!
......... then sipping on my pumpkin soup, I see Daisy , sicking, like she had a pump in her belly , pumping it out, it didn't even touch her lips.... even as i carried her away she was at it, it was every where. I felt so bad all the kids and parents must of really enjoyed there soup after seeing that!
Thanks Daisy, I wouldn't have you any other way. Great singing Izzy! and honest the soup was the best Ive tasted.xx
OOO poor Daisy gets hot and sweaty, and over heats in her helmet .........(she always wears it now when collecting the kids, as it gets hectic, more so as she wants to walk everywhere now!) Id rather be safe than sorry here!
......... then sipping on my pumpkin soup, I see Daisy , sicking, like she had a pump in her belly , pumping it out, it didn't even touch her lips.... even as i carried her away she was at it, it was every where. I felt so bad all the kids and parents must of really enjoyed there soup after seeing that!
Thanks Daisy, I wouldn't have you any other way. Great singing Izzy! and honest the soup was the best Ive tasted.xx
Services? Policy? Referals?
Had an appointment today, well to be honest.....its the 1st appointment in a long time. Ive been ignoring everyone other than family and friends. I gave up on it all ages ago, but no-one noticed!! I'm buggered now anyway as know one is going to snap there fingers and sort everything for me, the kids still need feeding, and carering. Its just Daisy's needs are so intense, her head has now got open scabbing areas again due to her helmet and the heat. Bringing up 3 kids is harder than i ever expected. Mark still floats around in his bubble , sometimes i think hes the only thing that keeps me sane. Wheres my energy gone .......appointment was OK, just want this housing crap sorted so daisy can get her own room to sleep in.. a sex life would help right now! (sorry Aunties,please don't repeat to mum nor dad!!)
I don't think it'll be long before she'll tips that travel cot, there so light weight. I cant fix it to anything as i need to move it daily to get in my wardrobe, even though theres hardly any of my clothes in there, all the towels and bedding lives in there also. Slight squeeze! She still has no where safe to play, and still has to be within arm reach so i can protect her head it need be, why didn't the council build houses with the consideration of a Children being born with a rare syndromes meaning parts of protective skull being missing, these doors and kitchen units, door frames, door handles, stair Bannister rails, even the plumbing under the bathroom sink is a life threat to daisy. didn't they think of this!?!... Ok fair enough they weren't to know, and nor where we until Daisy birth, and 15months on, I'm still begging for help, begging for my child to be safe in her own fucking home... yep i swore again, to be frank i want to get that council lady and shake her hand, because its confermed.....its all about the cash..... ! welfare of kids my arse, Daisy could die any minute if i take my eyes of her, and no she wont keep her helmet on, you try making a toddler wear a hat they don't want too.! I getting lower and lower by the day the needs of my children are becoming more intensified every day. Daisy care needs change every day, as she reached new heights..I missed so many appointments for her, i cant bere it, i ignore calls and cannot think about the tasks ahead, im bombarded with lists before i know it, hence the lack of blogging data latly. I cant even take Daisy in the garden due to the bloody great apple tree, with branches that spread over my garden bombing down with the biggest cooking apples ever, even Daisy's hat couldn't take the fall of 1 of them bad boys. Come back Jenny !!! I miss you (Jenny is my 'dial a friend' from a charity that supports mums with children under the age of 5, a few hours visit with a cuppa can mean a lifetime, sometimes a lifeline for mothers who just need that little piece of sanity!) Jennys a volentee , with all my problems, the kids school attendance issues and my sons mental support worker mettings not going to plan, with daisys needs,appointments, and stress of life im shocked after the times i rang social services for a assesment for houing safty, or for advice or help, they turned me away numerous times!!. Without my dial a friend id of been in a very dark place now. The social services are now making plans to help after i rang and asked if it had to get to the point where i left my kids on the side of the road somewhere, because it wasnt getting better. most of my energy has gone on reading policys and regulations, following proceeduares to get 'the services' involved, because with out that in black and white a self referal to places that accecp self referals means no support or help needed yet, that family can go from bad to worse before they met the criteria (so they say) to get the much help they need!. normaly to little to late, parents of disabled children have the highest divorse rate, hurrr just my luck i never married (I dont know whats worse).
so here i am tired, worse, angry, stressed, upset, letdown, a basic emotional wreck that really doesnt feel moving would be suitable given my daughters needs, and my role as her carer. Its not a case of administering medicine at 6pm, its a case of every minute shes awake having her next cheeking move imaginged in my mind so i can assess the risks and change whatever may kill her. If i missed this i wouldnt be a naughty carer that has administered medicines at 6.10pm rather than 6pm, in most casese flexability is varyable, but not 1 second flexability with Daisy, and not 1 second behind. but the coucil say she hasnt got a mobility disability, err yes she has when im forsing her to be straped in her buggy when i cook or put the rubbish out, sceaming her little head off, because shes not safe in her own home, to play, or watch tv, or safe in her own garden. even her bed is unsafe!! FML!!!
I don't think it'll be long before she'll tips that travel cot, there so light weight. I cant fix it to anything as i need to move it daily to get in my wardrobe, even though theres hardly any of my clothes in there, all the towels and bedding lives in there also. Slight squeeze! She still has no where safe to play, and still has to be within arm reach so i can protect her head it need be, why didn't the council build houses with the consideration of a Children being born with a rare syndromes meaning parts of protective skull being missing, these doors and kitchen units, door frames, door handles, stair Bannister rails, even the plumbing under the bathroom sink is a life threat to daisy. didn't they think of this!?!... Ok fair enough they weren't to know, and nor where we until Daisy birth, and 15months on, I'm still begging for help, begging for my child to be safe in her own fucking home... yep i swore again, to be frank i want to get that council lady and shake her hand, because its confermed.....its all about the cash..... ! welfare of kids my arse, Daisy could die any minute if i take my eyes of her, and no she wont keep her helmet on, you try making a toddler wear a hat they don't want too.! I getting lower and lower by the day the needs of my children are becoming more intensified every day. Daisy care needs change every day, as she reached new heights..I missed so many appointments for her, i cant bere it, i ignore calls and cannot think about the tasks ahead, im bombarded with lists before i know it, hence the lack of blogging data latly. I cant even take Daisy in the garden due to the bloody great apple tree, with branches that spread over my garden bombing down with the biggest cooking apples ever, even Daisy's hat couldn't take the fall of 1 of them bad boys. Come back Jenny !!! I miss you (Jenny is my 'dial a friend' from a charity that supports mums with children under the age of 5, a few hours visit with a cuppa can mean a lifetime, sometimes a lifeline for mothers who just need that little piece of sanity!) Jennys a volentee , with all my problems, the kids school attendance issues and my sons mental support worker mettings not going to plan, with daisys needs,appointments, and stress of life im shocked after the times i rang social services for a assesment for houing safty, or for advice or help, they turned me away numerous times!!. Without my dial a friend id of been in a very dark place now. The social services are now making plans to help after i rang and asked if it had to get to the point where i left my kids on the side of the road somewhere, because it wasnt getting better. most of my energy has gone on reading policys and regulations, following proceeduares to get 'the services' involved, because with out that in black and white a self referal to places that accecp self referals means no support or help needed yet, that family can go from bad to worse before they met the criteria (so they say) to get the much help they need!. normaly to little to late, parents of disabled children have the highest divorse rate, hurrr just my luck i never married (I dont know whats worse).
so here i am tired, worse, angry, stressed, upset, letdown, a basic emotional wreck that really doesnt feel moving would be suitable given my daughters needs, and my role as her carer. Its not a case of administering medicine at 6pm, its a case of every minute shes awake having her next cheeking move imaginged in my mind so i can assess the risks and change whatever may kill her. If i missed this i wouldnt be a naughty carer that has administered medicines at 6.10pm rather than 6pm, in most casese flexability is varyable, but not 1 second flexability with Daisy, and not 1 second behind. but the coucil say she hasnt got a mobility disability, err yes she has when im forsing her to be straped in her buggy when i cook or put the rubbish out, sceaming her little head off, because shes not safe in her own home, to play, or watch tv, or safe in her own garden. even her bed is unsafe!! FML!!!
As always Daisys unaware of all the stress i hope, happy and healing still, thats my girl....TOUGH AS BOOTS XXX
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