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..

Babies first Christmas

Well , We made it...Daisys First Christmas!!... Sorry I Haven't been here to write much recently as,as per normal I've left all the crimbo preparations until last minute,Whoops!!.. I have promised myself 1 thing though and that's to enjoy and spend quality time with the family. Daisy has taught me 1 massive thing and that's time has no value,it is simple priceless and no refundable.
Happy Christmas everyone xx

Daisys fun days...

Great Daisy and I have NEST today. Helmet packed,nappies pasked,wipes check,bottles check,Mark (aka Dad)CHECK!!, haha, hes going to love watching his daughter play. Hope he copes ok with the whole helmet thing??. He will Im sure, We love you Daddy marky xx
UPDATE....- same day- NEST was great fun, Alot less children today than the 1st time we went. Not sure if this is good or bad. It was nice to have space, but i love all the hussel and bussel,so does Daisy. Daisy had her protective helmet on,surrounded by loads of noisey,hard attractive toys,yet chewing her hand or various parts of toys seem more appealing.LOL. Mark cant wait till next time,haha, he was atcually really impressed, and even stayed for the songs at the end!! well done hun x
Looking forward to Friday as we are attending the wonderfull informative stress releaving workshop for parents, run via 2 parents who have put there Souls into helping other parent/carers that are in the zone! Its for parents/carers who have a child that needs. All these needs being conpletely different. As ive now been told a few times now.... We are a varied group of parents with children. All with completely different backgrounds,presents,and futures. We are here,didnt nesserserly want to be here. We all can all truly relate/and hear one another. Part of a group. Like it or lump it, we're a group. This may sound strange but, i must say Im proud i part of this. Dont get me wrong-I'd do anything for my child to be well,but in the same breath she is who she is, and I wouldnt want to change her. Yep theses kids are truly Special,in the most admirational way. Every parent/carer I have met so far is amazing,I have learnt so much,yet before my experience with Daisy I'll admit I was completly blind to the world beyound 'the average'(would use the word 'normal' as would the NHS, but im far from normal, so who am i to talk!!)

Nursery Nurse,Physiotherapy,Occupational Therapist Appointments update

Well we had a visit from all 3 today,separate appointment.
The Nursery Nurse first advising on safe play. Also stimulative play. Poor little lady has never played so much in 1 day, daisy is finally played out!. The Physio and OT watched Daisy's movement, we have met the physio before, shes lovely and shows me ways to developed Daisy's muscle strength,Daisy doesn't roll, sit,or do much really. She smiles and she smiles big!, basically Daisy kicks her legs,but i think this is due to being in hospital alot?!. We'll get there in the end!!..x

Hello all, Daisy trip to GOSH was an extremely good one. The specialist in feet/hand Plastic, is happy with her tiny hands,he say "Yes there small, and yes people may notice,she will not play the piano, but, they will not be an massive issue in her life."
As for the feet,hmm well they may be problems with shoes/socks etc, we already know this,hence please donate to help raise for shoes to be made for Daisy. They will review in a years times, to monitor. At this stage no operation is planned. Apparently the odd nail totally falling off is fine, so that's good as we did experience this. Now i can start concentrating on my housing issues,and where our Daisy will sleep, its starting to get a little cramp in our bedroom!

Feet and hands - appointment

hi, we have GOSH again tomorrow for feet and hands, this is our first appointment so we are keen to find out there views on Daisys mobility,just hope she will be able to walk, im sure with the big toe being there it should be fine.