Good bad and Vein of Galen

Summer enjoying the hoovering !

What a mixed week !
Some brilliant stuff some totally crap stuff.

The good ….

Owen came home with 19 out of 19 in a school spelling test !!! Yes they’re ‘his’ key words because obviously he’s not on the same academic level as his peers but i don’t care. It was such a massive achievement for him. It makes me feel like crying when i think of it. Don’t get me wrong i’d never just wrote Owen of,far from,i just wanted to keep input going into him but didn’t dare hope for any results from it all. I just needed to know that we and the school had at least done our bit and done our best by him. But to see that he has actually learnt to write and spell these words by himself (and knowing how tough he will have found it),it just made me so happy.

Also Owen has been invited to a sleepover at his friends house and yesterday he had a friend round to play himself. He doesn’t neccessarily communicate with his friends in a conventional sense but the fact that they WANT to be his friends and want to be around him and to invite him places is wonderful for him. I’m very aware that when he gets to secondary age this may all change and many kids will no longer find it cool to hang out with Owen. IF this is the case then i know Owen will struggle to understand and will be upset and maybe it will be time to make a point of finding him friends similar to himself. But at least he’s been given the opportunity to have normal childhood friendships and in doing this he is learning from them about ‘normal social interaction’. Hate always using the world normal but i’m not Miss politically correct and the right words fail me sometimes…ok they fail me often lol.

I was hoping to become involved in the National Autisic Society’s revival of their south west branch soon but typically their meetings are at times i’m unable to make. Even if they switched days to be honest ther’d probably just be some other reason i couldn’t make them.
I would however like to raise awarness of them and will be putting links to things regarding them on here soon. There are so many children with ASD that will grow into adults with ASD and there needs to be so much more for them than there currently is.

The bad,well not bad as such really,just a bit uurrggghh.
There was an article in the Mail the other day about a boy saved by pioneering surgery,basically glueing embolisms in the brain. He was born with the same condition as my daughter, a Vein of Galen Malformation. Please visit these links (copy and paste them into browser and read both articles carefully).

http://www.dailymail.co.uk/health/article-1232602/Babys-life-saved-doctors-use-superglue-fix-rare-brain-condition.html

http://www.dailymail.co.uk/health/article-1087800/Toddler-saved-pioneering-op-uses-medical-superglue-plug-holes-brain.html

It doesn’t matter if you don’t ofcourse but then if you don’t you won’t know just why i have been left feeling so angry and so very upset. I daren’t allow myself to cry about this because it brings back to much for me.
After reading the second article (the one about the little girl) i felt so very angry,i actually wanted to get on the train staight to GOS and confront Dr Kirkham and Prof Neville. I could not give a stuff that i’ve named them. The article is either very misleading or with inacuracies or the team involved in Paige’s VOGM are the biggest hypocrites walking.
It was suggested by Proff Neville that we consider surgery on Paiges aneurism,a shunt fitted and embolizing these malformed feeding blood vessels with glue possibly. The risks were explained to me,basically there was no gaurantees that my daughter would survive the op and there was a risk she could be left with more brain damage than she already has (this is due to them not knowing what parts of the brain are compansating for others due to her extensive brain damage and if glue goes in the wrong place,just fractionally it can cause more damage than good). The good outlook was that if the op went well the aneurism shouldn’t cause her any future issues (but again no gaurantee). I listened very carefully and asked if a second opinon would be sought by them as Paiges previous doctor,Dr Taylor had thought the op was very risky and that we should consult Dr Lasjeurnier or another expert in Vein Of Galen Malformations. Dr Lj was leading world expert and Dr Taylor was second as she spent many years working with him,i then believed it was Dr Karel te Brugge.
I was told that ‘no,Prof Nevile was very capable of assesing Paiges needs and suitability for the surgery himself and that they were more than capable of carrying out this surgery at GOS. They were qualified enough to not need to seek a second opinion on this matter’.
I bought copies of Paiges last MRI scan and took them to Dr Taylor,her stand point still hadn’t changed,she felt that if surgery was carried out then it should be by a VOGM expert in the very best of facilities but that it was still extremely risky surgery. Also given the fact Piages heart is under no strain from the aneurism and it hasn’t caused her any more problems,it would be a big risk to take.
I then had another meeting with Dr Kirkham,who said GOS still felt an op would be in the best interests of my daughter (disregarding my report from Dr Taylor). Dr Taylor used to work at GOS and Paige was under the care of her for the first few years of her life,when she quit another post she had GOS said the posts were inextricably linked and she had to leave her peadiatric work for them too. At first VOGM families were assured that the doctor in Paris LJ would be consulted about these children,which turned out in Paiges case to be far from the case as ‘they didn’t need to’.
Anyway i said no to surgery in the end. They can not fix the parts of Paiges brain that have been lost. She will never walk. She will always have cerebal palsy affecting all limbs annd motor functions. The surgery would not improve her quality of life in anyway.
Some proffessionals were a bit disgusted at me and thought i was stupid. Others said given that its high risk surgery and Paige is happy and healthy as she is they understood. Everyone has their own views.
What made me soo mad about the article was the part that says
‘ Following her diagnosis, Ryan and Laura took Ella-Grace to see specialists at Great Ormond Street Children’s Hospital in London.

But their hopes of a ‘quick-fix’ were shattered when doctors admitted she would have more chance of success if the operation was carried out in France or the U.S.

On their advice, the family raised £50,000 and the tot underwent the first ’superglue’ treatment at Bicetre Hospital in Paris by Dr Pierre Lasjaunias in June.

But disaster struck when the eminent surgeon collapsed and died just days after the operation – forcing the family to head to America for the next bout of treatment.

Incredibly, they managed to scrape together another £60,000 from donations and sent Ella-Grace to New York’s Roosevelt Hospital on November 9 for treatment with Dr Alex Belenstein’.

And here is my gripe if you like,after Paiges neurologist Dr Taylor left GOS i was called in shortly afterwards to meet her new Dr Prof Neville,so of we went.
After being introduced he said ‘right well,we’d like to discuss with you Paige having surgery on the aneurism,embolizing the feeding vessels,possibly with glue,and fitting a shunt to redirect the bloodflow around her brain. This is quite straight forward stuff and it would hopefully prevent the aneurism causing more problems’. So i said ‘ok,i will have to think about this and learn a bit more about the risks’. To which he answerd honestly ‘no surgery is without risks,we think the aneurism is a bigger risk though which is why we’d like to operate,there is a chance if the wrong blood vessel was glued and as we don’t know in Paiges brian what is compenasating for what,well theres a small chance she could sustain more brain damage. Then theres the very slight chance she will not come through surgery. But being doctors we have to believe in what we do and in science and we believe in the positive outcomes, and we believe it would be right for Paige to have this surgery’.
So i asked ‘will you be seeking advice or an opinion from Lj in Paris or one of the other VOGM experts’. To which another doctor replied ‘NO,that won’t be neccaessary,we are quite well equiped here to do this operation and Prof Neville is an expert in Epilepsy and this is very similar surgery. We would not be consulting with other Doctors on this matter because we are a center of excellence here,it would be completely uncalled for’.

So they were fine to operate on my daughter,i was silly to think they should even consult another doctor,yet for this little girl in the article they actually addmitted this op would be more successful in France.
I’ve been privy to some info that i couldn’t pass on but i wonder if my daughter was a suitable candidate for GOS as she alreday had extensive global brain damage. You see if they left a normal child post op with brain damage accidentally it would be very obvious,however if you take a child who already has extensive brain damage and they sustain more damage,who’s to say that it wouldnt go unoticed except for on an MRI scan.
People reading this may think i’m just a mad woman ranting and proffessionals wouldn’t possibly work like this. To them i say just thank your lucky starts that you’ll never ever find yourself in this position and at the complete mercy of so called proffss.
Incase anyone didn’t read either articles here is a quote of the risks from the first article Dr Brew, who has treated around 50 children, said it was ‘incredibly stressful’ but very satisfying work, adding: ‘The children go from looking like they were about to die, often overnight, to looking very well.’
Not all the stories have such a happy ending but Dr Brew said around six out of ten children treated go on to live a normal life and another two in ten are left with only a mild disability. A further 10 per cent will be left severely disabled and one in ten will die.
He said: ‘No matter how careful you are, there’s an element of chance to it. What is known is that if you don’t treat them, they die.’
Babies with the condition usually die within four days of birth without treatment.

My daughter is untreated and turned 12 yesterday,and is despite her disabilities very healthy,i would kind of like this to be known.

I had some texts of people telling me about the latest article about this life saving surgery and have had to explain to people,yet again why i haven’t put Paige in for it.
Do i think people really understand my reasons,no,but then again i hope they never have to. I have taken a decision about my daughetrs future that will ultimately mean i have decided her fate and i will have to live with that come what may. That is not me being dramatic,that is a simple fact,and as Doctor Kirkham said to me ‘you will have to live with the knowledge you refused surgery for your daughter’. Its a double edged sword though isn’t it,she’s happy and healthy now so if i put her in for the surgery and she came out blind,or with more substantial brain damage,or didn’t make it through at all i would also have to live with that decision too and Paige may suffer.
If the aneurism does at some point cause her more problems i will reconsider the surgery option but until then my heart and my head says no. I wish at some point she could choose for herself but she has the mental age of 4 and i don’t think i could ever bring myself to tell her the possisble outcomes of the surgery.

What it would be like to live a day without knowing all this stuff.

Well i’m about to sign of but lastly please please give the vein of galen website a hit.
I am going to put Paiges story on it shortly. I didn’t see any other children on it who had extensive brain damage and quadraplegia too,i guess poor Paige was doubly unlucky on that score. For every story on there with a sad ending theres one with a very happy ending. I hope in the future that this surgery brings a lot more happy endings for many more families.

I have included a link from Contact a family about vein of galen too written by Dr Ganestan,who Paige has also seen. Interestingly the biggest reason for wanting to do Paiges op was cited as being to prevent bleeding from the aneurism,however the article states that the risks of this are actually relitevely low ! hhmm.

http://www.cafamily.org.uk/Direct/v14.html

Just below is a link to the Vein of Galen Malformation site,where i shall be posting Paiges story soon,if you visit then many thanks.
Also you will notice Dr Wendy Taylors name on the FAQ’s page !

http://www.veinofgalen.co.uk/

Bfn, Jo x

Paige is 12 !

Omg and that means i’m getting OLD !!!

She’s really enjoying her day though,flitting between her presents,she’s very happy.
The 12 years have gone by in a haze really,but i remember the day she was born very well. I thought that day would change my life forever given she was to be my first born child but actually as it turned out it was December the 8th that really did change my life and world forever. That was the day she went into heart failure and i was told she had massive brain damage and an aneurism formed at about 6 weeks into the pregnancy but undetected. I was told by Great Ormond Street that she stood no chance of survival,and a few times i was called to her cotside in the middle of the night by the nurses and told just to hold her as they feared the worst.
The walls of your life just fold around you when you’re given news like that about your child,it takes time to find meaning in any other thing in the world around you but in time you can if you keep trying.
And now 12 years later here we are. Still being told that this is borrowed time,but i’m hoping she’s borrowed plenty more time yet to come. She’s in very good health despite her muscle problems and aches,and as long as she’s well and happy then i don’t feel i need to wish for anything else from life.
Paige’s life has made me acutely aware that we never know how long we’ll have,which is why i crammed my life with having babies lol. I found what life was about to me and have done what i wanted with my life. The only regret i’d have if i didn’t wake tomorrow would be that i haven’t seen them all grow up yet and i so want to always be able to be here for them.

Anyway am just going to post a few pics up and say bfn !x

This & that

Quick blog while i have a quiet coffee…bliss

Paige is busy colouring in and waiting for me to make her lunch and Summer’s just gone of up to bed for her morning nap and will be ready for her lunch when she wakes.
Had a lovely morning really. Summer’s spent most of it sat on my knee chatting to me and having stories,she’s going to be easy to teach to read i think as she loves books so much. I like quite days like this,no appointments and no chores. Ok theres ironing to do b ut theres always bloody ironing to do lol.

Just been making some weekend plans.
Have invited Kyles little friend round tomorrow. After football, me and Kyle will call for him and then go into town for a hotdog and a milkshake. Look at a few toy shops in town with them then bring them back here to play for an hour or two then return him home. Kyle doesn’t know anything about it yet but he’ll be very pleased when he finds out tonight ‘cos i’ve jut spoken to his mum.
He went to this boys house for tea so really i’m just repaying the favour but Kyle will be very happy.
We’re due to have one of Imogens friends round soon to as she’s been to her friends house quite a bit recently and we’ve not had her round here so i’ll have to sort something.
My mums away this weekend at my cousin’s wedding,really really wish i could have gone. She lost her Mum,my Auntie to breast cancer 12 years ago now,i feel more than a bit that i won’t be there. I was close to my Auntie Carolyn,so i can’t help feeling a bit rubbish for not being able to be there at her daughters/my cousins wedding. I’m sure she’ll have a wonderful day though (she has a really lovely step mum now)and Carolyn will be there in spirit,it’s just so sad that she can’t be there in person,life is so cruel sometimes when it cuts peoples lives so short and they miss out on so much. Often i’ll see something that will remind me of Carolyn and i’ll think ’she should have had these years too, she should still be here now,today’.
Part of my hasty nature i think is down to me often pannicking that i’ll get cut short,i’ll run out of time at some point,but then if i lived to 104 i’d still feel i’ve not had enough time,i guess we’ll all feel like that.

Anyway i’m of to make sandwiches for the girls lunch,tuna cos they both love Tuna. I would have thought it was a bit unusual for a toddler to love tuna as much as Summer does. That said her Dad LOVES seafood so i shouldn’t be that suprised. If a child could have ever been made more an image of her father then i’ve never met one !
Bfn x

Odd thoughts

I am enjoying this week soooo much more than last,if all weeks went like this then all would be well in my world. Except i know i’ve got a few shockers comming up which i am not looking forward to so just doing my best to enjoy the here and now.

Have made a good dent in my Xmas shopping this week which really i needed to ‘cos like i said next few weeks are set to be a write of with appointments etc.
I like to do nice little extra bits for people too but it’s so hard when so much of my time it pre occupied with chores,and i am the worlds most unorganized person ever,i am at least trying this year though
I love xmas day these days now,as it was xmas day that Graham proposed to me,it was Xmas 07,its only 09 now and we’ve already fitted a baby and a wedding in !!! Shocks a lot of people,but i’ve always thought no time like the present,when people wait around i often wonder what they’re waiting for. Maybe thats the hasty gemini in me,i do have a common sense half to you know,it’s just she doesn’t appear as often as my hasty headonist twin. Ha ha these days if i’m honest my commen sense twin is actually called Graham.
He’s a gemini too. Since we’ve met we’ve had a weird connection thing,our texts would always cross which was very bizzare and just 10 minutes ago i emailed him about a certain date when literally one second after me pressing send i got a text through of him asking me about that date ! If we could just develop our talent that bit further we really wouldn’t need to text or mail during the day we’d just exchange thoughts ! I’m not exageratting either,it happens sooooo much it is a little strange.
That said whenever i’m upset he never has a clue why,thats when his psychic abilities really let him down lol,or maybe thats just a male thing in that they can never contemplate that they may have said or done anything wrong hahaha.

On a different note i caught a bit of a very sad programme last night. It was a lady who had a daughter that was born with an illness that meant she would never grow up. The daughters illness was tragic in itself but also as tragic was seeing this 60 year old woman caring for her daughter who was in effect still a toddler and in nappies. Adult care had offered her a place in an old peoples home (her daughter not the mother) as she was officially 21 years old and not eligible for a place in a childrens unit despite having the mental age of a baby and the body of a 4 year old (she was tiny). It was basic common sense that this girl should not be placed in an old peoples home and the mother campaigned on the streets and even passers by were happy to sign her petion because they could see that it was basic common sense too and that this girl was not being treat apropriately or with care and dignity by the authorities. Stupid red tape and rules.
It took me ages to get to sleep last night because one day i am going to be like that old lady,only with2 disabled adults to care for at home. This woman couldn’t look forward to normal things like holidays and meeting her friends for lunch and everything else most 60 year olds with their health could take for granted. You could see the caring had got hard on her with age.
I must admit i dread the thought of getting old,not cos i’ll get wrinkley etc (already got them) not cos i’ll loose my figure (i never had one to worry about loosing) but it’s the caring for 2 disabled adults that scares me. They’ll always be my children,no matter how old they are,and i’ll always love them in that way,but the fact is they will be adults. Also i don’t know yet how Owen will be with his ASD as an adult.
I love my husband to bits but i kind of hope that when we’re older he meets someone else and goes his own way and lives his own happy life. I very much know whats instore and i don’t want us both to be bound to it. I feel like i’m just taking my bit of happiness now,while i can. Anyone who says thats silly doesn’t know crap all about adult care and the lack of it for people caring for disabled adults in this country. Also caring for an adult with autism is one hell of a job. Having children with disabilities massively impacts on our life now,we can’t buy a ‘normal’ house,we can’t just take ‘normal’ holidays with all the kids,we can’t just get a ‘normal’ babysitter for a night out and i can’t go out to work at any point so my income could be added to a mortgage. Not only that but theres the daily managing of these disabilities too.
Graham is amazing but i feel filled with guilt that the children with these issues aren’t biologically his yet that have the same impact on his life as they have on mine. Which is why he and other people think i’m crazy when i say i hope that one day he will go his own way and get to enjoy the things that he’d never be able to with me. I’m not selfless enough to tell him to go on holidays without me just so he has fun lol,it’d do my head in and i’d rather just be alone because at least i wouldn’t feel jealous or like i was missing out.
Also i would not want to leave him at home doing the caring while i went of and enjoyed myself (even though he’d want me to because he’s a better person than me) plus i’d only enjoy it if i was with him,i wouldn’t without,not one bit and doubly so ‘cos i’d just spend the time feeling way to guilty.
I know whatever he’d always be a part of the childrens lives but i do think he deserves some normality in his life at some point and he’ll never have that living with me. He’d have a lot more fun and an easier life all round with someone else,in time he’ll realise that,but it’s not all bad ‘cos at least i’m happy atm and still have some times to look forward to for now.
Are those weird thoughts ? maybe. But then i don’t know anyone who’s new husband has taken on their disabled children so i’ve got no comparisson.
Watching that bit of the programme made me really think about it all though. As did that Mothers Love programme that was on recently. I am going to be an old carer as well as a mother one day,it’s a bit of a thought really.
I think maybe i need to stop watching these programmes !

Well those are this weeks odd thoughts all put down,maybe i’ll sleep a little better tonight,or maybe i will after a galss or 2 of wine as well

Home…

Well it’s been a little while since i’ve actually blogged so thought i’d put something down.
Had a wonderful holiday with the kids and family,and had had a great weekend visiting my dad, Mary and my old friends beforehand. I really do miss them all lots.

Then when we got home it was straight back into the thick of things with appointments. Just to much going on recently, some days have just been ridiculous. I had to make 9 phonecalls one morning,all before 10am,easy enough except for when you have Paige and Summer to pacify at the same time.

To add to the weeks fun the rabbits hutch blew to bits in the high winds,poor thing,so me and my mum had to do an emergency hutch run on Thursday just 10 minutes before school run time. I ran in and bought it ready assembled but when the assistant took it to the car we suddenly realised it was going to be one hell of a job to fit it in the car. Resulted in dropping some of the seats and me sitting in the boot along side it. This caused many funny looks on Salisbury high street outside the pet shop. Needs must though,we made it home and when i got back from the school run mum had got Easter bunny settled into his new home.

This week i have a week off from appointments,but please don’t tell anyone they will only book themselves in and i’m kind of hoping to catch up on a bit of housework and some Xmas and birthday shopping for Paige who will be 12 very soon !
Hell i know that i’m old now ‘cos i keep saying to anyone who will listen that ‘kids grow up so quickly’ lol. Well imo they’re not little babies for 2 minutes,then the toddler thing lasts that bit longer (or maybe thats cos i find toddlers hard work lol) then once they hit 4 and a half and start school the days and years fly by.

Imogen did her 11 plus exam on Saturday. We won’t find out how she did until March but regardless i am very very proud of her,just the fact she wanted to give it a go. She’s not naturally the brightest kid around but when she tries then it really shows. Afterwards a few of us parents and the kids who took the exam met for milkshakes and hot dogs in town which was really nice. Seeing Imogen with her friends was a bit odd,she was really grown up and looking on at her it was hard to belive that she’d grown from this little livewire baby always making noise and asserting herself into this young lady really. It’s true what they say that children aren’t yours to keep and that to have a child is to have your heart go walking around outside of your body.

Recently i’ve had some rather unfortunate comments aimed at me for having chosen to have 5 children, along the lines of ‘how can there be enough love for all the children,the children must really miss out on quality one to one time’ that kind of rubbish.
I love all my children exactly the same,and have the same emotional closeness with all of them. I think if anything having had so many has always made me more conscious of this,and maybe you do have to work at it a little more because you have to juggle everyones needs more than if you just have one or two. They are all so very different as well. I love that though. I am extremely blessed to have been able to bring 5 people into the world and it sounds a bit soppy but i have found every part from seeing them for the first time to arguing with them over homework just an amazing journey. When you have a child you never know what they will look like and what nature they’ll have. It seems very much half nature half nuture.
Why am i typing all this ? Well lol i think after the crappy week i had last week i am just reminding myself that there’s plenty of good stuff to hang on to.

I hope by next November things will have settled and slowed up on the appointment side of things,if not for myself and my poor mum who’s now bearing a lot of the brunt of this too but mostly so for Paige. Life has been unfair enough on her so far and she deserves a break. She deserves a bloody good wheelchair too ffs but less said about that the better,or else i may well blow a gasket lol. The wheel on her chair was fixed the day before we left for our hol but now a plastic side positioner has snapped of and she can only be fully reclined until that gets sorted. If it’s not one thing it is ALWAYS another and thats nothing to do with me having sooo many kids its the bloody useless system and equipment disabled people have to make the best of.

Incase you’d not guessed i’m feeling a bit sensitive about having dared to have so many children after a couple of peoples recent off hand comments ! Well just 2 peoples really but meh,i’ll learn not to care one day i’m sure

Have stuck a few extra pics on the bottom of this blog ‘cos i was to lazy to place them properly in my blog…i know,me lazy !!!! never !!!!

Kids School Photo

Our Hol

Quickie…

Imogen

‘Cos i’m packing !

Anyway i just wanted to advertise/share a programme thats comming on this Tuesday at 10.35pm on BBC 1, When a Mothers Love Is Not Enough,i would put a link up but WordPress isn’t letting me. You can always google it though to read what it’s about. I’ll be watching it,it’s not everyones cup of tea but i think you should give it a shot anyway.

I think the more people watch this stuff the better,because if nothing else it brings issues into the public domain. It won’t make a world of difference to the Special Needs world but if it makes just one more person in the Neurologically Typical world care just a litttle more,even enough to open a door when they see a wheelchair comming then good as far as i’m concerned.
I don’t believe the gap can ever be bridged between the 2 worlds but i do think a boat could run between them occasionaly. I know what i’m talking about,even if no one else does lol.

The pic btw is of Imogen,it was Victorian day at school today so she had to go dressed as a Victorian girl. As Graham said the outfit will also come in very handy for when she’s cleaning the house….ha ha that’d be the day.
Oh and Kyle just laughed at her and asked why she was wearing a nappy on her head.
Poor girl,well i thought she looked very cute….i’m also thinking a maid would be a very nice idea lol.

Right well duty calls,i’ll be back in a little while,rested and refreshed…hopefully
Bfn xx

Back to school

Quick blog today ‘cos i’ve not done one for a few days and i haven’t got much time today.

It was Owen’s 8th birthday yesterday,he had a really good day and got a Star Wars light sabre from us because he’s Star Wars mad and a Batman toy and some other bits and pieces. He had to go back to school on his birthday after half term but didn’t seem to mind as he got to see his friends again.

The rest of this week is the usual,appointments today,tomorrow and Thursday.
Of up to the hospital later this afternoon to a cardiology appointment with Paige. Tomorrow the bathroom adaptations people are comming out to talk to me about Paiges bathroom and do means testing to check eligability. The woman mutterd something about after we've had it we can't move out for so many years or we'll have to pay £5,000 !!!wtf,i'm going to have to get her to be clear about that,not that i imagine we will be moving for 10 or so years yet so shouldn't be an issue but i do need to know excatly what she was on about.
Then Thursday it's back of to the hospital with Paige to an Oral Surgery appointment.
Which just leaves me Friday to do washing and sort packing for Center Parcs.
Oh and they still haven't repaired Paiges wheelchair so she'll be having to go in her scruffy old chair. I'm not even going to say what i think of the wheelchair service. They rang me yesterday to ask for her old wheelchair to be returned to them so i had to explain to them that if i did that before they had repaired her new chair she would be without a wheelchair at all and she's quad cp and can't even stand never mind walk. So i said 'you repair her new chair and i will return the old chair'. She then told me that theres wasn't even anything on their system about Paiges chair being repaired,despite the fact a man has been out and collected the broken wheel from us.
Oh also yesterday i found out that Direct Payments were paying us £800 less that they had said so now all that is having to be put right too.

To say i'm just pig sick of everything atm is an understatement. Just nothing in my life is going right,i seem to do nothing but argue with people on a daily basis.

Thats it anyway,i'm of to go and sort laundry.

Bfn xx

Microwave Mug Cake and more….

Little Terror...her not me !

The kids are giving me 5 minutes,so rather than torture myself window net shopping (like i often do) i thought i’d drop a quick blog and share a recipe i found the other day for a Microwave Mug Cake…it appeals to be because of the words, microwave,mug and cake lol.
I am gona give it a go with the kids. I really can’t bake,i’m not a domestic goddess or indeed any other kind of goddess and as such i’ll probably still manage to make this cake taste as yummy as chewing a dogs rubber ball but i fancy giving it a go,the novelty element appeals to me.
When we’ve made it i’ll get back to you and let you know the outcome.
Anyway for anyone else that might fancy giving it ago here it is

MICROWAVE MUG CAKE

4 tbsp self raising (SR) flour
4 tbsp caster sugar
2 tbsp cocoa powder
1 medium egg
3 tbsp milk
3 tbsp vegetable/sunflower oil
A few drops vanilla or other essence (orange, peppermint etc)
2 tbsp chocolate chips/nuts/raisins etc (optional)
Use the largest mug you have to avoid it overflowing in the microwave!

Add the flour, sugar and cocoa powder to the mug and mix.

Add the egg to the mixture. Mix in as much as you can but don’t worry if there’s still dry mix left.

Add all the other ingredients apart from the chocolate chips etc (if you are adding) and mix until smooth. Add the chocolate chips and/or the nuts/raisins and mix well.

Centre your mug in the middle of the microwave oven and cook on high for 4-5 mins, or until it has stopped rising and is firm to the touch.
Watch it rise as it cooks!

Allow to cool for a few minutes.
Either eat out of mug or tip onto plate and serve with fruit, cream or ice cream.

Serves: 1-2 (1 is a big portion for a single person, so could be shared).

Split between to mugs if you like or don’t have one big mug.

If anyone tries this before me then give me a shout.

So what else,well today i have been and got my quick mumsnet fix. I LOVE the larger families forum. Best post on there today was entitled ‘Toddler Fatigue’, one Mum had posted that she’d been doing 11 years of toddlers and was looking forward to the day she could leave the house without pushchairs and also the day when she didn’t have to worry about books being ripped up and wallpaper being drawn on everytime she turned her back. LOL.
I know the feeling. The best thing i ever did was have Imogen right after Paige,i did nappies simultaneously,routines were the same,they ate and slept at the same times of day etc. Yes it was mega hard,but also it meant that was all done at once,or well parts of it were because poor Paige was never able to become continent due to her disability. Having Owen and Kyle not to far apart has also meant they’re growing up as quite good company for one and other,they do argue but they also make each other laugh A LOT. I think if Owen hadn’t been autistic then he may have had less in common with Kyle as he is about to turn 8 and Kyle is still only 5 but because of Owens developmental delay he is mentally around the same age as Kyle.
Anyway the large family forum is AWSOME,the Mums on there are really grounded and are happy to share how many kids they squeeze into one room,how they do holidays and family days out,what cars they have and how good or not so good they are. One Mum even addmitted that shock and horror they secretly use their loft storage room as a bedroom for one of their kids (secret because otherwise it would void their household insurance).Its a wealth of knowledge. I actually think its become my favourite spot to drop in on daily
They might all be a bit potty having 6 children and contemplating 7 etc lol but its potty in the loveliest sense of the word and its one place that i fit right in.

Anyhooo,back in ‘real life’ it’s business as usual, a whole host of appointments lined up,grim.

But a few good things too,which is really good ‘cos distraction gets me past/through all the orthotics,physio,O.T etc appointments.
This weekend me and Graham are having a night out together in town and going for tapas,its been quite a while now since we’ve done something like that so it should be nice.
Then next weekend we’re headed to the North East (home for me),to visit family and some friends.
Saturday night we’re going to the village where hopefully we’ll meet up with some of my old school mates. I am rubbish at keeping intouch with people,anyway just going to pop down the village and see who’s about.
Sunday we’re going to spend the day and evening with my Dad and Mary and just have a nice time ,really looking forward to it.
Then on the Monday morning we’re going to make our way to Center Parcs in Nottingham for the week .
It will be really good to get away,although me and Graham know its going to be hard going this year with Summer who will want to be darting of everywhere and getting into several new kinds of mischief. We’ll still manage to enjoy it though i’m sure. And i may be on toddler number 5 ! but i never tire of seeing my little peoples face light up at the site of squirels and ducks and seeing them taking in their new surroundings for the first time and enjoying all the water slides etc,everythings so new still when they’re as little as Summer,it’s very cute and she’s very cute,even if she is a little terror most of the time lol.
Her talking is comming on in leaps and bounds every day,at this rate we’ll be having full blown conversations with her by the time she is 2. She is a little comedian in her own rights too,she has started saying ‘owww mannnn’ whenever she drops things (she got this from Swiper the Fox on Dora !). She is also never happier than when she is showing of ! theres a worry !

Right well its almost feeding time at the zoo so i’d best go and see whats in for me to throw at the hungry hoards.
Then this afternoon i’m of to post a package to Jeffry in Hondouras. I was writting a letter to him last night and looking at his picture. I’m not sure if we’ll ever get to meet him but i hope he likes getting our letters and little gifts we post him. I sent him a few pics of the 5 (correction 7) of us so he can put faces to names.

Right well i’d best run so as usual i’ll say BFN xx

BFN xx