' BACK IN 5 '
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.
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
Lost
The clock still ticks the doctors still state Daisy could never share a room, for risk of damaging her Brain or worse. The Skull still has a large area missing, I still carry her everywhere, and have to strap her in a buggy whilst I rush to the toilet, how inhumane, theres no-where safe upstairs for her, we sit in the living room with door shut whenever we are at home,its depressing and boring and very dark and lonely! My daughters not a dog.... But yet the council still haven't helped in anyway. I cant take the risk of moving to a bigger house when the doctors have warned me of the risks and insisted that they don't think it would be safe to move. They even put this in writing, yet Norwich city council state my daughter doesn't met there criteria for grant to adapt the home. A under 5year old child would only met there criteria in rare situations. I'm not sure what could be rarer??? it would be good if there could give me an example of this, but they cant. I think on a safety level, as in my daughter needs safety 24/7 or she will die, and the doctors are fully advising me not to move, the fact that she has a massive part of her skull missing would met there criteria in 'a rare situation' they are neglecting my child's needs because it doesn't tick the forms boxes... hello, my daughter now wanting to walk has half a skull, and her brain is very precious, sort it out you bunch of paper shedding office, single, non parenting government tossers.
THIS IS A CHILD'S LIFE YOUR TALKING IN YOUR HANDS.
oh and thanks Mrs.mp or pm whatever you are, you didn't ring, and you didn't seem to follow anything up. thanks .
THIS IS A CHILD'S LIFE YOUR TALKING IN YOUR HANDS.
oh and thanks Mrs.mp or pm whatever you are, you didn't ring, and you didn't seem to follow anything up. thanks .
Fun times
Had a great day yesterday at the Play barn http://www.theplaybarn.co.uk/index.asp near Norwich. Great picnic supplied by my big sister,thanks sis. It was great to see my niece,it doesn’t happen as often as id like,so i cherish every second. Love the way my big sister jump to defend me when i cried, the mum nearly got bogged washed..!…..!
Basically Daisy was playing in the baby soft area, on her own, its like a simple soft play pen. As a mother and her child walked from the bigger play area to the toilet they passed the pen. Daisy had pulled herself up and was watching the World go by. I watch her content she was safe. The little girl approached Daisy to say hello and the rest. The mum looked back and saw the little girl (no more than 4) had stopped to see Daisy. Daisy who was still in the soft play area for no-walking babies smiled at the girl. The mum then turned and continued to walk away from the child, probably thinking the child would notice and run along. The child noticed and didn’t care, she then slammed her hand directly on top of Daisys head, as if squashing play-doh!. Within the time of the girl coming to Daisy id stood up to observe and help the communication between the young ladies. With no choice other than to grab (in a soft way) the little girls hand,after saying ‘Don’t touch her head’ with this the mum was closer and glared at me like id abused her child, ate her dog and man handled her husband! I was shaking at this point though fear daisy would get hurt,just the thought shakes me up. I understood the mums glare then I said sorry or tried to, to the mum, then two the little girl whom was walking towards the mum. I quickly explained Daisy has skull missing on top of her head, and it c…….o….u………l………………d………………….. she ignored me, grabbed the little girl and stormed off. I dropped my head,looked at my feet,got Daisy and I then went to my big sister, I couldn’t hold back the tears, nothings ever going to be normal again, even a simple trip to a play area. My big Sis demanded I tell her what occour, she then asked where this mother and child was,I think she wanted to bog wash the mum!… It was my fault Daisy didn’t have her helmet on, as we had only just entered the building. …BUT….Daisy was in the baby area, i was watching her, personally i wouldn’t let my kids touch any ones head, let alone a babies. Daisy still looks well under 1year of age. Also its blatant to see her head isn’t as it should its red raw thin scar tissue with a large patch of hair missing. So maybe I will consider putting her helmet on before getting out of the car,lesson learnt. But i’m upset with that mum, who didn’t seem to care her she had upset my daughter or myself. What a caring lady, maybe she was worried about the impact me telling her daughter what to do would have on her little girl, then id understand, but as the mum dragged the girl away, she wasn’t even looking at her girl, the first thing i would do is at least care the situation , get to the girls level and offer cuddles. This women was not even up for reasoning, for what reason? after that Daisy had her hat on, for the rest of the day I felt the odd glare, not at me, but Daisy, i only hope she will think again next time she cant be arsed to assist the to directions for her child to the toilet. oh, well as will left and reflected on the situation, Big sister said…. Kerry your going to get that sort of thing all the time….. and I agree, big sis is always right, I’ve got to admit the bog wash wasn’t a bad idea either.xx
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
Check out these stair gate, totally out of stock in UK. If you happen to have one or two that youd like to donate please do so.. they are just what we need.......
Lascal Ltd KiddyGuard – keep your child on the safe side
Lascal Ltd KiddyGuard – keep your child on the safe side
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.
Well this is a fucking laugh a minute, shit... totally on my arse,walking round crying. Mark comes home from work, moans about what I've done and i don't blame him the house and me look like shit.
My task of painting the very small bathroom has taken over 6 months,finally i have the first coat on the ceiling. cant wait to not have to bath and dress without painting equipment and step ladders falling on me. I'm absolutely whacked out, not physically, mentally.
I had my eye test about 1 month ago, daisy played up the whole time , throwing her hat off and grabbing her head,pushing her fingers in. I left half way, got my percription, didnt get chance to look at any glasses. The optision said my eyes had deteriated more than they ever had before(from test to test) and asks 'had anything changed? new job? driving? more stressed? ....I had visions of me grabbing the bowl fish bowl specks of her, placing them firmly on her nose bridge and sceaming 'look through these,NOW DO I LOOK STRESSED?? ... big time.
Im sorry this blog is so negitive its mainly for the benefit of the general support system around me, Im kinda hoping someone or something will step in soon, like before i end up in a nut home not even knowing my own name. when i went to buy the paint and small roller tray weeks ago, i went to the same shop twice and brought the same items, all bar a different make paint (same colour/wipeable stuff) the second time around id totally forgot id already brought it. Ok we all do things simular, but the second shop was 2 days after the first!! and theres other goings ons that make me think ok, breath........and breath again.........
well how exciting daisy can crawl, not!, every day i clean the blood from the cot, this morning i even got a bit of flesh. wow, but hey not to worry as her little clever brain is there all protected with that skull around it.....whoops oh no it isn't..........ok, so theres no skull protecting the top of her head and she wants to poke her finger in it, and the skin keeps breaking and bleeding because shes mobile and wont wear her bandage. i told mark not to work weekends any more, but the last few weeks we have suffered as his wages have hardly kept us afloat!. £40 per weeek on school dinners!!, bring back turky twisters i say.! ;-)
so yep hes working this weekend, i feel like running away, but who would feed the kids??
as ive had no help ,advice, or support in finding/building or providing a safe area for daisy, ive thrown the towel in. this is a break for me these few minutes that i muffle on to you lot, what lot there is of you??, and to be frank this typing stresses me out i cant spell, im a lazy writer, and i dont even know why im writing...........
My task of painting the very small bathroom has taken over 6 months,finally i have the first coat on the ceiling. cant wait to not have to bath and dress without painting equipment and step ladders falling on me. I'm absolutely whacked out, not physically, mentally.
I had my eye test about 1 month ago, daisy played up the whole time , throwing her hat off and grabbing her head,pushing her fingers in. I left half way, got my percription, didnt get chance to look at any glasses. The optision said my eyes had deteriated more than they ever had before(from test to test) and asks 'had anything changed? new job? driving? more stressed? ....I had visions of me grabbing the bowl fish bowl specks of her, placing them firmly on her nose bridge and sceaming 'look through these,NOW DO I LOOK STRESSED?? ... big time.
Im sorry this blog is so negitive its mainly for the benefit of the general support system around me, Im kinda hoping someone or something will step in soon, like before i end up in a nut home not even knowing my own name. when i went to buy the paint and small roller tray weeks ago, i went to the same shop twice and brought the same items, all bar a different make paint (same colour/wipeable stuff) the second time around id totally forgot id already brought it. Ok we all do things simular, but the second shop was 2 days after the first!! and theres other goings ons that make me think ok, breath........and breath again.........
well how exciting daisy can crawl, not!, every day i clean the blood from the cot, this morning i even got a bit of flesh. wow, but hey not to worry as her little clever brain is there all protected with that skull around it.....whoops oh no it isn't..........ok, so theres no skull protecting the top of her head and she wants to poke her finger in it, and the skin keeps breaking and bleeding because shes mobile and wont wear her bandage. i told mark not to work weekends any more, but the last few weeks we have suffered as his wages have hardly kept us afloat!. £40 per weeek on school dinners!!, bring back turky twisters i say.! ;-)
so yep hes working this weekend, i feel like running away, but who would feed the kids??
as ive had no help ,advice, or support in finding/building or providing a safe area for daisy, ive thrown the towel in. this is a break for me these few minutes that i muffle on to you lot, what lot there is of you??, and to be frank this typing stresses me out i cant spell, im a lazy writer, and i dont even know why im writing...........
Blood tests
Daisy receive her blood test from GOSH, her haemoglobin is the higher end of normal, but i think its better for her than to be low... so im happy...alls ok x
Blood tests
Blood tests
I'm so please Daisys needs are out in the open, this might make the council realise that by law,they have a duty to assist disabled children to live a healthy and safe life.
I've begged the council and social services so much to help us, we are eligible for a disabled facility grant and in rare occasions it is given to children under 5, i would suggest this as a rare occasion. To phone constantly and arrange the assessment,beg,plead, and grovel for such support is ridiculous, and takes my attention of my role as a carer. All this has made me worry,depressed and ill. If something doesn't change soon, i don't know what I'll do. I'm worried sick, Daisy is now crawling and i can only pad and make safe so much of my house its silly, she needs her own space, as do my other children, and Mark and me. The other kids cant leave hard toys around they constantly have to clean, they rarely have friends round,that's not fair
r. Even Mark gets moaned at for leaving his mobile around,yer its great for Daisy to chew, but she also waves it around near her head, id never forgive myself if she donked her Skull-less part of her head. Generally the grant is for mobility, in our case the grant is needed to assist Daisy to have mobility, if i cant make her surroundings safe for her, they i may as well give up now.
Please show your support and write to the evening news about this story, I'm sure they will be happy to pass on your letters to the local council. thanks x
Milestone
Daisy is 1 year old today, I'm so happy for her. Wish i wasn't so stressed and tired, but for today nothing else matters, other than putting her Mookie Cow Trike together. It had to be the cow one, as its Dotty Daisy..
HaPpY bIrThDaY dOtTy DaIsY Xx+Xx+
HaPpY bIrThDaY dOtTy DaIsY Xx+Xx+
Flu Jab. Do/Don't??
We decided do. So today Daisy had the first half of her flu Jab, Next month Daisy will go for the second half.
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