keeping busy tho getting rdy for baileys op on 17th november some of you know that bailey has a caringbridge web site, if u pop by cld u plz leave a message im trying to find out who is rlly looking in on him and weather i sld be keeping it updated whilst baileys in, im asking freinds and family to do this as then i only need to ring the ppl who dont have access although if everyone can check its much easier cell reception at the hossy sucks so im gonna have a real prob.

and if ud like to be in the picture go to www.caringbridge.org and visit baileyduckworth  ( no space)

xxx

  soo much has happened forget all the money crap its all still as was a mnth ago, our main let down was baileys op being cancelled im furious after i ensured we attended every appoinment had all tests they needed iii rearranged appoinments to ensure the results wld have been prosessed before his op as they were trying to book mri 2 days after duhhhh, its been a nightmare.

then they lied to mee they begun steroid treatment after his eeg showed caiotic activity 24/7, i asked before it begun will he be having op on 21st yea yea its all sorted....like hell it was, it was written all over there faces but i explained he needs to book time off work if he books it he must take it then, were screwed if u change date a mnth this went on for yea yea crap, 7 days before op i get a call cancelled!!!!!! when i asked why she told me anuther little boy needed that slot more urgently.

it was only after id gone ok whens new date etc put phone down sobbed like a baby that i thought,,,,hang on if he needed that slot soo badly i wldnt be getting 7 days notice but i told all the family had my rants etc but felt a little guilty for being mad too because of the little boy.

the nxt week we had anouher eeg for bailey it showed the steroid treatment had done a fantastic job to date he has been seizures free for 12 days and were currently weaning him off....yayayyyyyy

i also gt the oppertunity to speak with the specialist who said i believe the ops been put bk as we needed his brain activity to calm down so we cld see were they stem from and ur surgeon wld like him to be steroid free!!!!! yea i knew that, im 27 yrs old and i was treated like a mug, i get why they have done it now thats been explained what i dont get is why they didnt tell us ??? the surgeons sec who lied is off this week but im furious with her, what an awful lie id rather she said i dont know, but i was soo upset for bailey but accepted that he was stable and thats this other poorly child needed priority.

The op has been put bk to 16th november only a few week away now but i only found that out last wk and i have had to ring them to push for letter confirming it, but ill flip if they change it now as he only has 3 more shots and thats nothing to the doses he has been on so the seizures will be bk in no time, just hope weve balanced it right?????

As life desided to give us anouther crappy mnth we desided that we'd fight bk, and have a halloween party!!!!! life may be crap, most of the time actually but i choose nt to accept it haha im stubbern as hell, it will get better......right???

now must go gt baileys jab in 10min, then a house to get rdy ive thrown all caution to the wind to mk this party a sucsess lets hope it looks good ???? will prob load pics to facebook haha i usually do, just think i post almost anything so what r the pics i wont post be like??????????????

cya xxxxxxxxx

Well 97p a wk off polltax so thats a bummer as i now pay an exra £600 a year and the rents £300 a mnth more than the morgage was...this is not how things were ment to be!.

But maybe i sldnt complain were ok we dont have to move but it wld have took some pressure off bobby working 44 hrs a week and dreading anouther unpaid day off when bailey needs hospital appointments and admissions, and y'just never know whats rd the corner.... we were just over on bobbys income so were gonna get some advice n see if he can drop a few hrs and then we'd get £85 a week towards rent and he cld come to baileys therapy that wld be ace as i have routines for bailey that bobby just doesnt get,.... theres techniques for encouraging his posture etc that just go in one ear and out the other coz he doesnt see them do it with him and se the results like i do.

Feeling like everytime somethings going well, something else is rdy to bulldoze me, honestly i must be the unluckiest person everything bad thats happened has just happened its not like i brought any of it on myself or someone hates me infact id rather someone hated me compared to the crap lifes been throwing at me lately i think id rather someone smashed the car window or bad mouthed me least that kinda stuff u can deal with on face value, how am i suppose to react to ur child needs half his brain removing but u have to watch him fitting daily for nearly 8mnths then the op wont work and he'll be in icu after a blood transfusion, then we'll tease u with a taste of its a miracle hes ok to change tactics 4 mnths later and oh more surgery urghhhhh, i just wanna explode but what do i do drive the car into the tree hit the nest person that pees me off right between the eyes trash the house???????????? noo coz it wont help and there is no easy fix is there? just gotta tk what ever life gives me and hope theres some mercy soon x

oh winge ova now to ring rd dog kennels for koko whilst baileys in....so far were on £10 a day he cld be in 2 wks + sob sob there goes anouther 140 quid sob sob.....he definatly wont be in 48 days they cld have kept the flammin dog

(((hugs)))

Bobbys really getting carried away with a new car idea I love bsm's car "corsa" bit small for us tho as a main car but ive been applying a lill pressure and told him ken my instructer says this models the best corsa....which he did say, for me it wld be ideal and theres some pretty good deals on them too. Bobbys not beat down quiet enough yet tho he cldnt stand to see me with a brand new car and him in his r reg, i like his car but i guess hes a bit vainer than i thoght and omg how wld his freinds react him working full time n me house wife we new car must be under the thumb right? of course he is but he likes to pretend haha....atleast hes heading in the right direction to the car show room :)

OH AND GUESS WHAT IT WILL BE AUTOMATIC.....MAYBE I SLD JUST FORGET THIS MANUAL THING?.......WHY DOES IT FEEL LIKE IM CHEATING THO??????????????

Baileys kinda settled he is sleeping alot and Mackenzie's bored whilst im just tired of trying to please everyone.....B seizures are strong now so the little guy is shattered but they are remaining in the safety limit before rescue meds..touch wood! Kenzie really needs nursery but he really did not take to kindly when we tried, he went through alot with Baileys op aswell so I think this time Im gong to get that over with let him get settled again....and pray hes rdy in January, works out quiet well saves me paying nursery fees as he gets free nursery from january....just gtta find one? he's being enrolled in the school up the road even tho I know with his birthday on 2nd sept they will hold him bk a year but hes in.

This week is wearing me down we had an accident with Baileys meds saturday night....smashed bugger! had to be the one thats specially ordered and taked 3-5 working days to get from manufacturer, leavimng us with the counter version that isnt designed for kids it stinks and he vomits it back after chocking on it....in our favour no chemist had that so we had to revert to tablets which are great cheacked with his consualtant he can stay on tabs if hes keeping them down, Then the Doctors get involved gp recpetionists really think they are sommat huh ended up we 5 days worth now his consultants on sick so cant tell them im ordering as agreed bugger bugger bugger!!!

Baileys appointment for his mri came through and meeting we sugeon and op date total mess sorted that now anouther letter hes also having an eeg 24hr tape done on 30th...panic over he can come home with it on but were back nxt day to get results.....some notice would have been nice thats 2 days we out pay for Bobby.

i hope nxt wk runs more smoothly I seem to have been on the phoner all week talking to ppl that know absolutely nothing about my son his needs or his condition yet im in the wrong????

Now I have to drop a driving lesson a wk untill Baileys op coz i aint gonna pass b4 and im running outta my lessons we family fund....although if i went auto id pass in no time, he doesnt seem to think i sld but then were getting an automatic car so why am i wasting my time putting myself under pressure and a whole lotta stress I cld do we out??? The point of me driving was to get Bailey to his app without putting ppl out for lifts, getting me some freedom and independance and security that if he needs rushing in I can get him there faster than the ambulance cld get to me......well mission failed coz the seizures returned as we hoped wldnt now ill have ppl trailing bk n forth from manchester, its all a huge mess that we just cldnt help, and i hate the fact thats its all out of my hands.

Winge over for today, but im sure someone will see fit to wind me up again soon, its always the way ....xx

 Loads has happened here you better hold on tight, last time I logged Baileys seizures were back well there still here and have got worst as each week passes, we saw his surgeon last wednesday and they will try more surgery if the mri results diagnose the seizures are still coming from his right brain and theres a point. All hs seizure activity efects his left side so im pretty sure he'll be eligable. Now they have to deside if continuing the operation they started is viable of sould we remove his right brain all together (the option he didnt have last time due to his age and size. Im sure we'll get him sorted and he'll be back t that lill ray of sunshine we had for those short four months earlier this year. His surgery could be this year as we dont have an issue with his weight or age can you believe it last one feb this cld be as soon as november....

I just read my last blog about the house alot has changed we have moved the old house is still in the hands of solicitors and weve been here a month, its great mac loves the garden but we ended up no were near any family or freinds and my commutes with bailey take longer but its fab and suits our needs in a nice area all the draw backs will cancel themselves out once i pass the dreaded driving test, apparently i can drive but i have bad habits whom i got of bobby grrr, suprised my self thought id never get this far never be able to park or reverse and guess what i aced them all...haha thats gonna come bk at me isnt it lol

Amongst the move, Baileys health issues and learning to drive we have had Kenzie and Bobbys birthday i even squeezed a party in there too, talk about shattered schools bk so therapy starts again we bailey had 3 hossy app more nxt week and then the letting agent rang to ask if he cld do his 1mnth inspection....superwoman has pulled it off again,,feeeew!, luckily the wasp problem stopped him going outside koko took a liking to the bench...oops

bday pics n latest of kids on facebook just coz i is having some lazy time...no actually i havemt time to load all sites got driving lesson again cya xxxxxxxxxxxxxxxxxxxxxxxxxxxxx

On the brighter side of life it looks asthough the house is sold all directors have approved the go ahead  to buy the house, now lets just hope theres enough pennys in there pot for this quater to finnish the deal, sld know in a few days, funny i thought id be dancing on the roof tops but now we bails its not so important, long term it mks a huge impact improving how we can help bails but in the short term i need bailey better now and everything else can wait.

This blog sounds kinda gloomy but its not were having fun with the boys spoiling them as always, the move sld bring me closer to all my siblings my best mate and my mum n dad, better schools and a house that will allow us to live with some space for the boys to play and a garden so bailey doesnt have to be cooped up all the time.

And hopefully this time nxt year ill be driving the lessons are going well and were hopin to buy a new car with all the deals its just too tempting.

Soo lots going on hopefully without to many downsides this yr for bails xx

Mac's doing great too 3 in september...were does the tym go??, getting very cheeky his language skills are amazing even if he repeats the odd word i rather he didnt lol, however the potty training isnt going to plan and im freeky slightly but its hard work with all baileys app were nt in long enough grr life huh..

Mummy n Daddy doing well too the pressures easing and weve managed 2 nights out vodca sambuka oh the choices lol, still no news on the house thats anouher story how ever we have gt my driving lessons sorted sld be nxt week ish thankfully most ov u are safe locals are being warned via fb haha

And I shall soon be the hemifoundations uk office as there only international fund raiser so far were only small but have raised just under £1,000 once the logos etc arrive ive to get onto companies to help me get keyrings pens n that made but as all raised funds go direct i need freebie's...lets hope my retail experience helps me? if nt ill have to resort to bailey "look into his eyes...." who cld resist helping its a charity!!!!

8 weeks after his surgery he's physically improved vocal visually aware......omg... plain and simple hes better!!! than they ever thought he cld be and his futures looking fantastic only the head control to master and hes not far behind his age/stage how kool is that hes been on pause for 71/2 mnths and in 8 weeks he fought bk with everything he has....of course hes my boy i knew he cld do it all along, we had words b4 the op...he was told he would get through this and he would amaze the world because i cldnt deal with anything less, selfish huh? nah he knows i loved him from the min i knew he exsisted(oct 2007) there so suprised they think as soon as he gets the head control he'll do even better and wouldnt be suprised if he met the other milestones ie...crawling walking pretty much on schedual.

now i also got some pics of him at physio today which i will try n load haha try never done it b4 we this phone so look out they are coming.......

youd think being active wld have calmed his weight gain too right???.....wrongggg...27lb funny that id been saying he needed nxt size clothes hes in 9-12 upto 22/24lb now sld we bother we 12-18 as they only fit upto 29lb?

well better go bailey may be sleeping but mackenzie is very much awake

hugs jo xxx

We have a busy schedual ahead with assesments to ensure hes getting the best care to meet his needs right now were waiting to have his vision assesed untill then no one really knows how well he can see, but we think its improved. In june i gave birth to a baby in feb i met Bailey and hes more than i thought any son cld be let alone one thats faced the hurdles he has, were so very proud!!!!!...can u tell????

Mac's also doing well were currently potty training or at least im trying lol not easy when theres always something happening and he also believes hes a dog......it isnt as funny as it sounds. He's still looking after lill bro but has some issues were working on, the main one being a stutter, but he only stutters after hes said what he wanted clearly??? its thought its due to the stressful situaltion hes been through too and he may be attention seeking.

Those of you on facebook will have also seen ive done it again not happy for life to be hectic i like to throw in a lill spice or coco as we call her...hehehe I bought a choc labrador....now your thinking this is why macs thinking hes a dog right??? WRONG... he did this before the only difference shes made is he now thinks every dog is coco! she is lovely and will be a very well trained princess and not the madame im dealing with right now, we have got her more for bailey shes to be trained pro or semi atleast so if he needs help she can be there plus if he was to need wheelchair etc hes going to have to get used to dogs he may well be assigned one.

As for the house we still dont know...actually we kinda do financially the housing group cant afford our house but due to the reasons for the sale they are requesting funding from the county council to persue the sale as a good will gesture....and boy do we need it...ill get bk to you one day in the future with the final decision...................................................................?

Other than all this were good tired, as you'd expect but good rdy for summer taking the kids to the park getting the boys birthdays sorted maybe teaching coco to fetch.....that sounds pretty normal doesnt it.......YES!!!!!..... NORMALITY WERE HAVE U BEEN....lmao xxxx

hes a good boy we very rarely hear any complaints from him well unless macs oining him or he needs a nappy doing but to think hes just had brain surgery he takes one 2.5ml calpol b4 bed thats it and hes teething so he used to get that anyway...so brave.

tomorrow we return to manchester to get his stitches checked at this point im still confused because they told me his stitches were disolvable? but then b4 he cld come home his stitches were checked and he needed a few extra maybe its just those that are being removed is bandages are stikll on so its hard to tell i can see a bit and it looks great healing well.

but the best bit is that bailey has had no seizures since the op!!!!!

we were told before the op seizures may return within hrs days or weeks and that was when they palnned to complete this op in baileys case its only 50% complete, marcus told us ther is a very small chance they have done enough but its one in a million but hey so's bailey right? so far hes attempted to wake hrs after brain surgery whilst fully sedated on his second attempt to wake he started kicking his mobility doesnt seem to have been effected like they expected, the docs are just amazed maybe we'll find out more tomorrow....

See wat happens when you just ask a few questions mummy had it sorted in 5 min.

This is Bailey today just 7 days after surgery and he looks great always been chubby so its debatable weather any swelling is left, hes playful all the time just as before but more so as hes not tired from the seizures, this child amazes me hes been to hell and back for most of his existence yet wld you know if you passed him in the street?

loads a luv jo xxx

ive updates caring bridge again but its pretty much what ive told you here, hes doing great and we cant wait to bring him home and put this family back together even if it is only untill the nxt hurdle, macs missed him loads putting him to bed feels so strange no daddy to tk him no kisses for me and bails no nite nite wuv u bye bye seeya....mmmm as his head peeps rd door so ill chase his puckered lips x

but hopefully we can put that right on monday, i know ill sleep with my eyes open for the nxt two mnths untill this is sorted for him but thats still better than sleeping at the hossy or even at home with half the family missing, oh and once hes home i can go and get my tattoo done were all having the hemi butterfly  see it at .....hemifoundation.org we is me bobby my sis neice posibly two and who ever else wants to join in its really pretty and a nice tribute to him although god kows were bobbys having his its not really manly lmao

hugs all xxx

ONLY TO FACE IT AGAIN IN 2-3 MNTHS

Full story is on caringbridge sorry it hasnt been updated some problems with my mobile ment we had little contact with my bruv so he couldnt update "hes ok but errr?" lol

its a bit of a rable alots happened but were getting through it one step at a time baileys safe thats the main thing hes a little fighter and has suprised the surgeons everyday.

xxx

Ok managed to get this far if you click on the link below it will show you baileys slide show in gallery format... if you then click on ORIGINAL SIZE in right hand corner it will play with music and be presented how I intended it to be, I know were taking the long way round something that is probably so simple but an hr of trying ive had enough...

www.slide.com/r/hF4IIQMX6z_2oIkGhMzDcBuC1NCa_dqI   

Far from finnished he still has alot to tell about his life and Im sure he has many more suprises to come ,but as you can imagine Bailey himself takes over our free time, enjoy the pics oh and plz lisen to his song the 22 pics are done b4 the song ends but its just perfect for him and id really like to share it with you guys. xx

2009 Is a new start for our family we intend on making the very best of it inspite of the start we still have to face thankyou for being in 2008 I hope your all still with me through 2009 and many more years to come xx

We really appreciate your freindships this year the kind words and the suprises although in the nicest possible way I hope there arent any more, I WILL BE KEEPING BAILEYS CARINGBRIDGE SITE UPTO DATE AND IT WILL BE MANAGED BY MY BROTHER DURING FEB...so plz keep in touch

we hope to catch up in feb with a much happier little boy xx

The plan was to cancel xmas, for us 2009 will start in Feb when Bailey returns home and we can settle into a more managable family lifestyle, but thank's to a few suprise's thing's are'nt looking so glum...

Last week the council called to say they will have a decision about the house before xmas no news yet so fingers crossed, then a suprise package arrived yesturday morning from you guys "are'nt you the best" and then a card from one of the mums on the hemi site sent a card throught with a pic of there family it just goes to show things can get better they look like there having a wonderful time what a difference the op cld mk....

So a big thankyou to you all, your support has been amazing I have no idea were I would be now without you all, you've picked this family up off its knees and your always around when I need you, the weirdest thing is some of my bestest freinds are so far away weve never met but your in our hearts were ever we go, I look forward to 2009 anouther year with you guys to help us along and best of all celebrate the triumphs I know Bailey will acheive.

Speaking of BAILEY....new pics will be on the caring bridge site unfortunatly they wont load on here at the moment, just incase you havent been before here's a link www.caringbridge.org/visit/baileyduckworth

                                   xxxxxxxxxxxxxxxx Merry xmas to everyone at minti xxxxxxxxx

Thankyou all for checking on me and my lill family the support is a pick me on an almost daily basis you guys are the best !!!

Hugs Jo xxx

Made a freeky dicovery with all this time on my hands Mac sld have been here on the 20/8/06 and Bailey will be here on the 20/6/08 now if Mac had desided to arrive on time that wld have looked weird...I also went on a baby astrology site to see what im letting myself in for....

May 21 - June 21
Planet - Mercury
Element - Air

Provided by Astrology.com

Eager to get going (this baby probably kicked up a storm in the womb!), the Gemini baby is likely to be talking early and making a mark from day one. Curious and quite the explorer, this tot is one who needs lots of stimuli in order to be happy, as they are easily bored. Since those communication skills are top-notch, the smart thing to do with this baby is bring them into a play group as soon as possible. At home, siblings could easily fill this function, as someone must! It's never too early for the Gemini baby to interact with others, and they will also learn their lessons early on. The Gemini tot is definitely not clingy. Quite the contrary, this is one baby who is happy to march to their own drummer, gallivanting about and being amused in the process. Surprisingly, when this baby is not engaged (chatting or playing with others), there could be a certain emotional detachment. For that reason, it's best to keep things uncomplicated and easy for them to understand, the better to maintain harmony. To sum up, the Gemini baby is the Great Communicator of the play group, has a short attention span (so keep 'em busy!), and is one clever and creative tot.

Seriously are they taking the piss eagar to get going???? the kicking up a storms soo true tho... lol !!!

Were so bored now with all this waiting, Bobby tells me my eyes have changed I have blue eyes but around the pupil is brown i swear they were just blue!!!!! then i rem my hair changed couler when i was carrying mac my sisters does it too she always new when anouther ginger was on the way as she gt a strawberry tint with being blond i gt it too but nt this time maybe Bailey will be a blond bubba??? that means ill have to go bk blond lol he'll look odd with a ginger daddy and a brunette mummy...hehe it wld be nice to get a look in this time with Mac being all daddy in every way.

So off to the hossy for my pre op 2morra ok its nt that exciting but it wastes some time and gets me that bit closer to friday morning they said there gonna cheak to see if breaking my waters is safe if nt ill have section done pretty soon unless an emergency comes in but as im booked in at 830am ill be first in line and sld be in theatre by dinner im kinda hoping there is a delay as mac was born at 12.07pm they almost had the same dob(kinda lol) why nt the time too???

im so fed up with all these contractions im sore from all the prodding the sweeps did work to some extent but that wld be tmi believe me...i have contractions back ache menstal like pains for about 12 hrs a day the other 12 im sleeping or peeing, even my eyes are sore from watching the dam clock constantly thinking ok here we go there getting worst ill time em then right on cue as i get myself all prepared they stop...i wake up every morning thinkng shit still here time to face anouther day...

after the hell this pregnancys been im not so sure 4 is a good idea its putting pressure on us all, even my sister pleaded with me to stop having babies after bailey shes a born mother why else wld she have 6 but nt one of her experiences comes close to mine and she can see what its doing to me, you expect to be physically drained what you dont bank on is the bad care the worry you cause your family and freinds but most of all what upsets me most is how much distance there is with me and mac at the moment,

bobbys desided to have the week off as he lost monday im bk in fri and to be honest i need him here mac needs him and hes loving it but now im being snubbed from the cuddles too i guess he sees daddy as his play mate at the moment were as mummys the crabby one ...true i am

so i cant wait for bailey to be here andgetting my little man bk too...

maybe then ill calm down im so mad at the care ive gt the fact no one lisened to what i wanted and now they have caused this situation after bobby will only have a week at home with me nt long enough for me to be able to care for mac properly so ill have help frm dawn my sis n my dad mostly...

but hey thankgod his mother works that wld really tk the buiscuit if i had her to deal with too...lol