I received a call this morning saying my poorly auntie had passed away at 630am they gave her morphine at 3 am for the pain but sadly she has gone, we all knew she was ill just this weekend we were all talking about getting to see her me especially as ant b loved a good chrisening it was always her that bought the children there chrisening bands and i felt a little guilty that kenzie n bailz havent been done and with bailz being so ill she hasnt met either of the boys, but we were reassured that they were optomistic she wld get home again, my dad will be gutted so im going to see him this evening in hope that his best buddie kenzie can lift his spirits the stress of worrying about bailey and his sister have really taken the toll on him of late, what a mess xx

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

Hi guys wow a mnth since i blogged doesnt seem that long at all,

  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

Definatley spoke too soon when I said things had taken a strange tern for the better...... oh yea!  today things became back to very very crappy :( went to see if...? now we dont own a house, i cld get some help we poll tax n ren?????t ermmmm no!

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)))

So glad this week is over, things have taken a strange turn a good one tho...Still in two minds about changing from manual to automatic lessons but then on reflection ive been learning just under 4 mnths seems like alot longer but thats because the need for me to drive is so great for Bailey, but I havent given up on passing manual just yet my instructer is great really nice guy and no nt attractive lol, but we have alot in commen he understands me, even we Bailey which is rare his son had cancer on the brain stem so he's been were I am. I feel like id be letting him down and me too a bit, but i cld pass auto and ive still got time to then pass manual aswell but passing now gets me fully licenced and on the road.

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.

Back again...I've missed being online, but as I seem to be stuck in the house waiting on ppl day in day out what the hell...

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

Hiya everyone,

 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

Bad news is ...Baileys seizures are bk, small but bk, they started on the 20th 1 yr and  Day poor lill guy the first was soo mild Bobby cldnt even see it but I cld feel it and he knew his lill eyes peering up at me, thankfully it was short lived and he had a great birthday party but then anouther came in the evening much the same, a weeks passed and weve seen bits n batts some more vigorous eye flickering, the doctors were called to see weather i sld go bk a step as hes being weaned off one of his meds they said no hes nt in any danger but to watch for triggers suck as flashing lights etc. Last night he had anouther more violent yet mild in comparison to what he has had, im keepin a close eye on him and hoping thet this scorching weather and his teething may be contributing, yet on the other hand i cant help but think there speeding up fast n we cld well be looking at anouther hemi op probably within the next 12 mnths.

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

hi guys just thought id drop in and let you all know whats been happening here, Baileys had his assesment and he has scored at stage 4/5 mnths pretty good as thats 3 mnths afta his op and he was at newborn, hes just learnt to roll ova and hes feeding him self one handed lots of work ahead but hes on his way and stilll....seizure free. He's one nxt mnths and we have yet to mk plans i think a partys in order!!

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!!!!

is janelle ...amazing because its so beautiful and connects so well to bailey and everything hes been through the song is linked to his one true media montage if u wanna lisen its on my profile xx

Nope definatley no fool here hes a lill star!!! my clever boy has just been for one of his assesments at the therapy centre and mi oh mi has he just blown them away (curently orbiting mars i think lol)

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