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.