Periorbital Cellulitis-Out of Hospital

Daisy had Periorbital Cellulitis, a nasty infection of the eye. Needing fast strong IV antibiotics. Due to Daisy having a weakend immune, because of all the medication shes taken,we're bound to get run down, but she copes well, getting stronger,still, everyday.
Yes we are home, we got discharged yesterday, so only there 2 nights...wooooo. The hospital wanted us out as there have a problem with Noroviris, it has swept over 5 wards and was creeping on to the kids ward, with 1 child diagnoised. We wanted out fast!. Daisy ok, bit down in the dumps but ok. Heres a link to explain what was wrong
http://www.kidsgrowth.com/resources/articledetail.cfm?id=1813

Hospital again!

Well we did well, but I new something would go wonky.
Back in Norfolk and Norwich rushed Daisy up for eye infection, they surprisingly put her striaght on IV Drugs, to prevent any eye damage, tonight is our 2nd night. Im not to confident as the Noroviris has shifted though 5 wards recently here, and yep its now on the kids ward-great!. so yep just a little tense an obsessed with infection control, am sitting here in my whites and msk as you read....LOL. All going well,i recon we can blagg our way out of here tomorrow, if not monday..x watch this space ....

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Genectics

Hello, sorry I'm here and there Right now. So much happening. Daisy has genetics's appointment tomorrow. Not sure what this entails. I'm dreading the findings, and not really wanting to tell my youngest daughter theirs a chance of her baby being ill, its a horrific thought. Daisy hasn't been well, again, she had a day of sickness. We think shes over the worse, i kept apnea monitor on, but couldn't sleep as i worried about her choking on her vomit. Today shes perked up, so hopefully all is well.

A not so down day....

Hi all, well my last blog date wasn't very positive, i just felt and if I'm honest still do feel like I'm totally drained. I cant even put into words how i feel, its beyond stressed.

I cant give up, as I've been told(thanks Sara), your right never give up, and anyway, I haven't got time..x
We have the 2nd half of Daisy's flu jab today, she has a cold and isn't looking her best, but I've weighed up the pros's and con's and I'm going with the jab!!.. Daisys head (skin) did start to over granulate again, 3 steps forward then 2 steps back.... but it seems to be improving again now.
Doctor put my tables up to higher dose, think i need them!!, just don't want to be on them forever, but if it helps take the edge off things abit, then I'll be pleased. ...and then they all went home for tea.....
 Another thank you to Sara, because this blog has help me alot,more than and tables. Helps me to cry, laugh,stress,get angry, and generally release my emotions. Its like a diary and really does help, so thanks Sara, as after I read your friend Anna,I think it is, after reading there blog, it got me typing. So big thanks xx hope all is OK you end? did the trigger op go OK?

Down days

Hi all, sorry not been updating latly, just a little down. stressing about housing, daisys head has gone worse again, not a big worry as it always takes 3 steps forward and 2 steps back. got loads of chasing up to do ie persciptions, etc.. im tired, and bitter at the support we get, its bollocks! will write agian, when i can think clear. bye 4 now.if your there/here?? xx

Plastic Surgeon

 Daisy had an appointment with plasic surgeon. He is happy with the process. So we are heading the right way  ";~ ) Also had Health visiter, who is going to follow up, daisys eating habits. As she is still eating the smoothest, first stage food. Anything else chokes her, as in stops breathing chokes.

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.

Housing Issues

GOSH advise us,Daisy is at the same amount of risk from infection as she was from start. Daisy is still on her daily Iron,Pain killer and Flucloxicillian 2x per day. Personally I think the risk isn't as high,so I've relaxed on the infection control,just a little!.. A little calming on cleaning was well in need, my hands were starting to bleed they were so dry!.We Just want to get though this winter,without a big scary bug heading our way. Its going to be hard with my other 2 kids mixing with other kids,and them school germs.  Not to mention how cold its been.
 More great news NOT the local council have said NO, in a rather rude way too,, about my application for home adaptions. hur?? as if! I had at least 6 voluntary letters supporting my case from various Professionals at Hospitals,even Specialist at GOSH.
  THE FAMILY ~ I've got a 3 bedroom council house Kyron(male) 11years old - 1st bedroom. Izzy(fem) 6years old - 2nd room, and Mark and I (Daisy 9months) in the 3rd room. We have been here since the end of 2008, when we were forced to leave our house due to the Social Services forcing me and kids to more, if we didn't they said the kids would be taken away,due to domestic violence. We were granted homeless and left all our friends,belongings,dogs,family pets,schools,everything behind. My son Kyron was diagnosed with ADHD in 2006,and Izzy has speech and language Therapy, they both find school hard,partly due to disruption,time of,and my lack of attention due to moving etc.. They both find it a struggle adapting to new surroundings. Like any kids they need stability. They both can have bad tempers (ie-hitting,biting,and smashing the odd thing!) and challenging behaviour. They didn't want a new baby,and they didn't prepare for an ill baby!. Family life was hard enough just with my first 2 little monsters! as lovely as they are......When we got the house after a year of refuge's,and car sleeping the kids finally began to have faith in there surroundings again. Then I fell pregnant,Me and Mark warmed them to the idea,until they seem more excited than us. All was good,then....Anyway , the last year has been a battle for them, they,like us didn't have a clue what was going on, I was taken in hospital 3 weeks before the Birth,Heavy bleeding. Then,for a few months I stayed in with Daisy at various hospitals including GOSH,London for 1month.The kids were bounced from house to house, Nan to Auntie,Auntie to Grandad and so on..... We had no warning that Daisy would not be well, it was a complete shock after the 'Normal' Birth. The first time the kids came to visit at GOSH, Daisy had an Apnea attack and as I put my arm on Kyron,he then said 'Its not OK Mum, I know shes going to Die' I didn't know what to say,...that's a first,i know...Sadly,I also didn't think she'd be here today, if I'm honest.
 Can I say-Thank you to all who called and visited me around this time,your friendly face's,coat hangers,fag breaks,knickers,shoes etc , uplifted my spirits,sorry you had to fly home, Mum,Chris,for once I didn't want the attention, due to these the circumstances. I look back now and I cannot thank my Aunties enough(not forgetting Frank,of course) for visiting. Mostly I want to thank My Mum and my Dad. I can truly say my Dad has become my best friend, weather he likes it or not. I cannot believe how my mum copse with the kids,school runs,party's,clubs, she just picks up where Ive left from, no ifs or buts. Amazing lady. Great tea making too.x
 Now the kids have started to settled again after Daisys Birth. Id like them to have a chance at experiencing being kids, not being homeless,having ADHD,worry about getting to school,missing class,or if We've been rushed to hospital again,or worry that there little sister is going to die. THAT'S NOT FAIR.
  The problem is Daisys health and safety. Should it be a problem,or problem solved?.
 We have been told Daisy should have her own bedroom, For obvious reasons. To prevent infection. If she is to share I would be on pins,worrying. I would have to re kit the bedroom so all sides were soft, toys were soft, I would need to be able to get access fast to her, in case the Apnea monitor went and at worse needed to resuscitate her, (general we stimulate to Heart and blow on her a few times, this seems to get her Breathing again). The nurse at GOSH wouldn't let her leave until we were taught Life Support. So calm down family. Daisy has had 6 Apnea attacks so far, that we have dealt with. What we are aware of. I don't think this is appropriate for a 6year old to witness,do you?. As soon as Daisy's walking she will wear her Helmet all day. We have to try and let her go Helmet free as much as poss, as the skin (when its there) will always be stupidly weak. Therefore a safe soft,clean environment is a must. agree??. I cant make Izzy share her room,having to change all her belongings and be punished for having a sister with her Skull,Skin missing and all the rest of it. Yet I need to promote Daises well being,letting her grow,be free,be safe,be happy,be a child..! Somewhere I can administer her medication, somewhere she can recover from future operations, somewhere she can not need her helmet,a whole room that's Daisy safe. agree??. Well the council did, when they saw the file I put together, they were swayed by the medical support letters I had gathered. Now they say No! WTF. Hang on, Daises head was leaking CSF 4moths ago,due to pressure in her head from crying in the car as its so uncomfortable, I have no childcare, rest bite, I haven't had 5mins without baby, even my mum wont have her,totally understandable-massive responsibility. The council say yer, she needs a room, we can get you a 4bed. I cant move with all this going on, I cant pack/unpack and care for Daisy.  Ive got to move, kinda find that hard, i do school run, chemist 2xweekly(that take 1hour each visit) care for Daisy,attend appointments(daily)Change dressing 3x week,administer Medication 4x daily,take observations 2x daily,cook tea(if there lucky!),and I'm suppose to pack, sterilize new house after finding 1, carpet,decorate,be mum to my other kids, not let daisy cry,in case her head leaks CSF again, keep daisy sterile,promote her healing skin by not wearing helmet, and you want me to tell my other 2 kids were moving, just the thought makes me want to commit crime. It would be rather hard with Daises lack of skull, and quite frankly not worth the risk. Pressure on Daises head could course a Hemorrhage at any time. Or CSF leak, these are Life Threatening.  The government give each council money, the council then give grants Disability Facility Grant. But as Daisy hasn't got a leg missing or a common illness, getting this funding isn't easy.



So with all this, Kyrons ADHD behavioral problems, struggling in education,and deep depression,. then Therese Izzy's food comforting (I taught her that on1!), Deafness, due to glue ear(smoking in house,ex taught her that 1!). Speech and Language Therapy. Private one to one tutoring for 10 weeks in maths at school. Id say There are settling, finally they can be kids.
 I don't think there ready for a move not after the shock we had at the Birth. The council want to do what will benefit the family best. I was advised by Doctors to apply for a grant via the local council and Social Services,A Disability  Facility Grant to home adaptions. They said no, errr hello Skull missing??? infection risk?? Heart Defect?? Risk of Main Valve exploding in head if stressed (daisy,not me!) previous traveling and crying experiences causing CSF to pour from my babies head just 4months ago, pouring for over 1month!, how high risk??? DOH!!, nothing but helmets, soft toys and operations for skull plates , tissue expansions, maybe foot operations, maybe blowing up of Heart Valves to look forward too. We can move so Daisy can have her own room, geeeee thanks. I monitor Daisy 24/7, fast action is needed if she shows signs of infection. May i add my partner, Mark, Daises Dad, paid tax for years, big amounts, never signed on, what do we pay for?? Help fund Government Housing for vulnerable  Women and children?? Help these people with moving?? help and follow there health up with outreach care after losing the lot?? information for parents whom experience Birth Defect, that are shocking on the eye, Undetected Defects until the Birth?? we pay tax for education support?? housing?? hello, family in need!!!! END OF.

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Funny the places you suddenly feel blessed.

It happened to me last week next to Zippo's Circus Big Top in a Dorset field.

We were on the first part of our hols - Camp Bestival, the brilliant kid-friendly festival curated by Radio One DJ Rob Da Bank and his incredibly creative wife Josie.

We'd parked our hired campervan in the disabled field in the shadows of the stripey Big Top and the Helter Skelter.

Our mates and their kids pitched their tents around us to create a guy-roped mini-village.

Ridicuously as the sun fell on the first day I felt a rage building.

I realised I was going to be the one left back at the campervan in the evenings.

While everyone else was enjoying Madness (who I'd seen before) or Human League (who I wasn't that keen on the first time round) with their kids I'd be back at the van because Elvi would be the only one who couldn't cope with the noise.

This was completely unfair of me. Why should anyone else be expected to look after my children? Why should my rather lame needs come before those of my daughter?

Sulking like a teenager I transformed our campervan into the bedroom of dreams for my two kids and stuck Jungle Book on the portable DVD player hoping one of our mates would be struck by tiredness and, even though I hadn't thought to ask them, come back and look after my children.

Pressing play turned me into the Pied Piper of disabled camping, suddenly loads more children, some of whom we'd met, some we hadn't, clambered up the steps wanting to watch.

They crammed into the van and I poured a glass of wine for myself in a bright pink plastic Ikea kiddy cup.

Then all hell broke lose. One of the visiting girls' mums That me! didn't know where she was and not knowing us assumed she'd gone missing.

She had the field locked down by security guards. O yes!

Any vehicles leaving disabled were searched. One of our party heard the kerfuffle on their way back to our pitch.

We realised what had happened and reunited distraught mum Me again and confused daughter Izzabelle, who just wanted to see what happened to Mowgli.

The shaken young family turned out to be from Norfolk. and....???...ooohh~arrrr....

Not only did they have 8-year-old Jenny Thats Izzabelle, who turned out to be partially deaf, with them but their ten-year-old son and thats Kyron and a three month old baby Daisy.

I poured them some wine in blue and green Ikea kiddy cups to calm the parents' nerves and they told us how their beautiful baby was born with Adams Oliver Syndrome. Well needed!

We assumed she was wrapped in blankets against the night cold but it turned out her skin and scalp hadn't formed properly and they were actually bandages.

Her dad had given up work to look after her.

The family had saved to afford this weekend away to give their other children the break they deserved. They would have no other holiday this year.

They proudly showed us pictures of their baby.

Later they dropped back to give us their few beers as a thank you.

In the shadow of Zippo's big tent I (The face I will never forget,thankyou)counted my blessings, then my mother-in-law watched the kids and I caught Madness's last tune - It Must Be Love.

My family fell apart when Daisy was born, the kids where in total shock,we all were. We had arraged to book a holiday to Disney land in France, and even had the money!. That all got cancelled, the money flitted away, and the kids were,yet again let down. So without Nanny and Grandads aproval we went last minute to Dorset,Tents,No tickets!,but we went. It suited us there were 24hour medics,use of a fridge,Disabled camping and the Fesival was a real family avent,I didnt meet anyone who didnt have kids. We argued all the way,the kids screamed,..... Then we got there, I'll never know if it was the place,the working together,the being away from home ??? but something click that weekend and that was my family,Click tight back as one,. Totally what we needed..