Baileys doing really well he's home and being a little angel, he's moving his left side pretty much as before he rests the arm but when it gets going his grip has improved, hes now not just putting his hands together but grasping his right hand with the left, his focus appears to have improved and hes regained his voice lol, after the vent was removed he had this adorable lill winge so quiet almost like a new born, but his voice has returbned along with the smiles and giggles and a few baby babbles, his routine is great he wakes around 9am after sleeping all nite how lucky am i....

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....

So happy, things took longer than expected there was a few cock ups but never the less hes home tomorrow, his bloods sld have been done daily but his line was blocked so rather than trying a vein they left it all day meaning anouther nite in hossy then the following day the docs needed those results finally the used a vein a what do you know the sample went off results all clear Bailey doing great but then... this morning he had a sloopy nappy and they suspected a bug moved him to isolation by dinner i was frantic wondering what was happening whilst sorting transport, as it turns out nothing hes been on milk only for 5 days so obviously solids had an impact der... saw his surgeon he was happy Bailey cld come home if the nurses were happy but the registra wanted to wait untill the morning to remove his dressing so rather than bringing him home to drive bk 1st thing hes stayed the night, but hes coming home rly coming home, i cant wait !!!!

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

Well he sure is a fighter I  returned to ICU yesturday to find bails had made vast improvements, a tires daddy was rdy for his night at home but an exciting day followed one by one the machines came off the vent went and for some reason his feeding tube was removed only to be replaced before his transfer he skipped hdu and went straight to a childrens ward icp still monitoring brain pressure and sats machine for monitoring oxygen saturation levels... readings stable all night, he cld open one eye saturday and opened the right this afternoon feeding tube removed once and for all, baileys bk feeding via normal methods but slowly does it, he now really doesnt need to be kept in so were waiting to here the neuro docs opinion on bringinmg him home tomorrow, he played this afternoon knocking his mirror book about which i thought was accidental untill i tried to put it back were he cld see himself he put up quite a fight his strengh so soon is amazing, physio's happy the doctors are baffelled hes just bk and no seizures at all yet.

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

Hi guy's just letting you know Baileys made it through the surgery complications ment it coulnt be competed and a few suprises for the surgeons made it difficult that its now not possble to complete his functional hemispherectomy (disconnection of right brain) instaed they will have to remove it right now hes recovering on icu he has a vent feeding tube and all the montors yet hes actually breathing himself hes very swollen but doing great within a few hours he tried to wake kicking wriggleing still able to opertate both side of his body they doped him back up for his comfort, now over the worst of it we sld be home nxt week.

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