Wednesday, October 15, 2014

Sensory Overload

Every time I pack a bag for Boogie... Whether it be a sleep over ... A weekend away with family .. The dreaded holiday.. I don't imagine an easy going relaxing time ... The moment someone says let's do it ... the blood drains from my face ... and my brain goes into over drive!  People tell me to relax ... it will be fun .. enjoy it .... Clearly they have never experienced the dilemma that is being the over prepared parent of a sensory child.

From the moment someone says lock it in .. A thousand things are running through my mind ... To avoid a meltdown of sorts ... I need to pack EVERYTHING known to man that clicks into our sensory puzzle ... Short of the kitchen sink .... Cos Boogie is aversive to water ... not the drinking kind ... Just the washing and splashing kind..

Some days I seriously think running a marathon would be easier than what is running through my brain.. For every stimulant .. there is a subsequent reaction unfortunately and I need to be prepared ... Sometimes it means that Boogies baggage .. and I mean the literal kind (although the emotional sort is never far behind) .. Literally outweighs everything I need in list of things to organise... Oh and pack

At the moment.. Chewy necklaces are right up the top of the list .. it goes to school .. it goes to therapy .. it goes EVERYWHERE!!!! And there is no time to be in short supply ... they look frazzled come week 2 of hanging around that dainty little neck .. Actually frazzled is not the right word .. I think maybe chewed and gnawed to perfection ... Mr Robot is usually missing a leg or 2 .. and hanging vicariously off his safety clasp .. which then gets replaced with a new rubber safety clasp ... Oh the pain of re-threading rubber through a thin rubber tube of medical grade rubber... *Le-Sigh*

JabJab is definitely the next on the list ... sometimes ... if it is a small appointment .. or just a trip to the shops ... you can persuade Boogie to bring one of the baby JabJabs ... Yes .. We have a whole family lol ... BUT there are conditions ... JabJab's tag is often chewed or rubbed to perfection (we roll it between our fingers ... or around in little circles on our nose when we are stressed out)... so it has to be a whole JabJab .. no holes with stuffing poking out ... Bell intact (it is a rattle toy) AND a perfect REAL tag ... can't be a pretend tag that mummy has painstakingly sewed on from some other teddy or a little piece of ribbon or satin .. No no ... It has to be perfect ... slightly rubbed .. and Authentic!!

JabJab is well travelled .. he has seen the sights ... been to Disneyland in Hong Kong .. Something admirable for a teddy of sorts to have achieved in a life time!  He plays golf .. Watches movies ... and is a Huge fan of popcorn .. I do digress though .. I guess I could do a whole post on the adventures of JabJab - In the words of Gru from 'despicable me'  "LIGHT BULBBBB."


Get back on track .. Get back on track hehe  .. See what I mean .. my brain goes of in spirals ... flicking in every direction ...

We need to take wet wipes ... Wet wipes are essential ... because I can't just splash water over his face or use a flannel that is a big no no ... even a wet wipe (not the huggies ones cos they are too thick) has to be wrung out so it is not drippy and yucky.  


We NEED the Ipad & earphones (educational games oh and his favourite rock band concert - obviously "Godsmack" - don't ask!!) ... things can be too loud .. and sometimes need blocking out .. he finds a nice strong rock beat comforting .. Go figure

Next comes a blankey ... Has to be fluffy and soft ... and MUST come complete with a tag of its own too....

We have a light up pillow pet that comes for sleep overs and trips ... Because we don't like the dark ... It puts a star lit sky silhouette on the ceiling ...

Snacks ... Safe foods have to be planned out ... He needs to have access to things that are safe in his mind... so that he has options .. Whether it be in the car on the drive ... or when we get there ... or a routine before bed ... the drink bottle because with his CP his hands are way too unsteady for a cup ..

Oh and the clothes that have to be packed ... Oh lordy ... Plus leg splints ... Shoes that fit over leg splints ... Special socks long enough for legs splits ..... shoe inserts ... the list goes on and on!!! And to be honest I have probably omitted quite a few things for the sake of my brain isn't working this morning ... (Yay for first day back at school foggy brain hehe)

I can honestly say I envy (not in a nasty way just in a longing for normal kind of way)... every single mum that just gets to grab her handbag a couple of juice boxes for the kids and go out ... not have to consider the time you visit a bowling alley to have some sort of normality because it might be too loud ... I think it actually makes me a little OCD ticking off all those checklists in my head ... But then ... I wouldn't really change his world ... We manage ... ticking one box at a time!!

Hope you all have a great week  DMMC x




Hospital Visits and Holidays take ALOT of planning!! 




Monday, October 6, 2014

Soup ...

Yep ... it's been a while ... I'll say sorry ... but I really haven't had too much time to think of anything but us recently ... You know when people talk about being crazy CRAZY busy?! ... Well that's us ... I recently have only been functioning on 50% .. thanks to my amazing support system we have gotten through relatively unscathed!! ..

I found out that I either have a benign tumour or a cyst in the back of my head which is causing a whole heap of havoc ... So on top of our normal crazy schedule .. I have had scans .. and specialist appointments for myself to boot .. and that is without even mentioning the days I have had extreme vertigo and migraines ... *Yay*

So I thought I would slip back in with something a little bit easy.. that I have been meaning to do for a while now :D Hope you'll forgive me xx

Sooooooooooo one of Boogies new found things ... Is dipping Toast or VERY CRUSTY bread into soup ... He gets a little bit of the flavour .. without toooooo much of the texture ...

The go to favourite for the last few weeks has been chicken and sweet corn ... I make it relatively from scratch .. and let me tell you it is probably one of the most fiddly soups I have EVER had to deal with .. Apart from our family "Brodo" recipe .. which drives me CRAZY picking out the bones *URGH*

Anyway thought I would share it a little cos it is soooo damn yummy .. I have been storing it in the freezer without the rice ... and has been making life sooo much easier on a busy day all I have to do is steam some rice in the rice cooker which I do while doing the whole bath routine :D .. Can't really sneak too many veggies etc into this one .. but it tastes sooo damn good!!!

Here goes :

2 litres* chicken stock (You can cheat & use stock cubes, or you can pre-make the real stuff mmm)
4 chicken breast fillets
Light soy sauce
4 teaspoons finely grated fresh ginger
3 Cloves minced/finely chopped Garlic
Cornflour
60ml (1/4 cup) water
2 x 420g can creamed corn
2 x 300g can corn kernels, rinsed, drained
4 egg whites
1 teaspoon sesame oil (for each bowl at the end)
6 green spring onions, thinly sliced diagonally
Salt & freshly ground black pepper
Sambal/Chilli Paste for taste on the top

Start with your Stock and chicken in a large saucepan and bring to the boil over high heat. Reduce heat to low and simmer for 30 minutes or until chicken is cooked through. 

Transfer chicken to a heatproof bowl. Set aside for 5 minutes to cool slightly. Finely shred with a fork against the chicken grain is easier ... 

Add the garlic and ginger to the pot mixture. Place the cornflour in a small bowl and gradually stir in the soy sauce until it makes a smooth paste and is combined. Gradually stir the cornflour mixture into the pot. You may need to do it a couple of times to get it thick enough or to your liking... Stir for 2 minutes or until the mixture thickens slightly.

Add the chicken back in with the creamed corn, corn and cook, stirring occasionally, for 2 minutes or until hot.... 


Use a fork to whisk the egg whites in a small bowl.  Slowly pour it bit by bit into the soup .. you need to use a chop stick and wisp them through so you don't end up with BIG clumps of egg ... Cook for 2 minutes or until white ribbons swirl though the soup. Remove from heat.

Apart from the rice (which I do in a rice cooker so takes me 2 seconds to do while everything else is going on ... if you leave that and the chicken in the stock for a while ... you don't really need to do anything except for the last few ingredients Takes about 10 mins of prep .. and 10 mins to cook once your chicken is ready ... 

I serve it over steamed rice ... cos that is how I have it at the local chinese shop for lunch and I LOVEEEEE it that way lol But I also add some baby spinach to my bowl too between the rice and soup layer!! Then on top a drizzle of sesame oil ... Salt and Pepper to taste ... Spring onions and some of the chilli or sambal..

It takes a little while, but it is totally worth the effort!!!! YUM!





Just for the record this is MY bowl lol ... there is no way little Mr sensory would have something green in his bowl hehe x 



Monday, July 7, 2014

Weird Experiments!!

Introduced our SOS therapist to our Zoku today  lol She had never seen one before ... :D 

Our food therapy list today was : 

Plain Crisps 

Purple Beetroot Crisps

Purple Jelly - Natural (Grape - No red food colour due to allergy)

Purple Lolly snakes (Natural grape)

Yellow Lolly Snakes (Natural pineapple)

Cheese blocks for grating (Yellow grass for our yellow snakes to hide in)

Tinned pineapple pieces Frozen overnight

Milk

(Milk and frozen pineapple put into a blender)


Soooooo ... as per usual we worked through our foods .. blah blah blah .. nothing really exciting today .. the usual gagging etc etc ... Seriously .. who's child GAGS on lollies ... MINE!! And probably a few of yours too if you're reading this ... And then .. We brought out the ZOKU!!

He was down to the last few ingredients and she let him blend up the last two ingredients to have an "Experiment with" ... He had a sip .. yep usual gagging ... And then put them into the Zoku ... although just before it went in he did mix in some left over purple jelly into his .... But it worked!!!! (He is big into experiments so got to watch it go hard etc while we were kissing and blowing all of the left over foods into the bin)


It took me a whole heap of effort to try and remove it ... and then I read the instructions .... YES temporarily ... I thought like a man!!!! Who wouldn't think that an icy pole would come straight out of an icy pole machine?!?!?! Me that's who!! Turns out the stick has got to go in first before you stick the chunky pineapple pieces in LOLLL

Then ... BAM ... it came out!!! Wooohoooo ... And then he ate it!!!!!!!!!!!!!!! It was rock solid the whole time ... didn't last long enough to melt and attempt some of the sensory problems!!! But I don't care!!! He asked if he can try some watermelon juice in it tomorrow because he likes the smell of it... Can't wait!! Definitely gotta try it again ...

I think at this point the only thing that will make our eating journey easier is a Thermo mix ... I am saving every penny as I go ... Hopefully I will have one before the end of the year .... I've seen them in action now .. and I can't for one second say I don't have that pang of jealousy that comes with something awesome in the hands of someone else ... Like that kid at the play ground who is the only one who's mum won't buy him an ice cream from the ice cream truck! lol COME ON you know what I am talking about!!

Things are going well ... without pressure we are slowly building on things ... They don't always get eaten again .. But any try at this point is a WINNER winner chicken dinner!!!

LOVE therapy .. it is changing our world one day at a time!!!!

DMMC
 xxx




Thursday, July 3, 2014

Miss June

I say Miss June for a few reasons, June was a month of celebrations and commiserations.  It has been a pretty bumpy ride, and I would love to have skipped over it.  Not only have we been plodding along with all of our therapy, we snuck some botox in, got an ALL CLEAR on an MRI for little Mr Boogie, who they thought may have had a tumour pressing on his cochlear nerve.  We have done 2 weeks of serial casting, post botox too ... And then my birthday on the 24th, went to the Casino, won enough to pay off a speeding fine .. whoop whoop haha .. Yes I know speeding fine wrap me over the knuckles - haven't had one in years, honest!!

But the day after my birthday, hours before we were going to drop off some cake to my pop, Boogies GREAT Grand Poppy ... He passed away, peacefully at home.  I am not sure whether to write off June or deal with it, but the first of this month marked the day of his funeral so it kind of carried over a bit.  Boogie and his Poppy were SOUL MATES ... They had this little streak to both of them, to be honest I think it made Poppy younger, I have fond memories of him terrorising a 3 year old that could barely walk with a vacuum cleaner, with little Mr Boogie giggling his absolute ass off!!

We have spent every day since his passing talking about him, not from bringing it all up personally, but because his little soul misses him soo much already.  It has been absolutely heart breaking!! So instead he spent the week in between drawing pictures to send with him.  We went to the shops to buy some rainbow lollies to put in too.  And a magic wand so he can keep playing his tricks up over the rainbow.  The rainbow theme has significance though...

Boogie has previously lost another poppy too, when he was 3.  It was soo hard to explain to him what was going on, and as far as he knew he got to say goodbye to Poppy John who was in a "box" as he called it, which was sent up to heaven, on a RAINBOW.  But this time he understood a little bit more.  I am one for closure, death is a normal process in our lives - unfortunately.  But I didn't want to shield him from it entirely, I wanted him to be able to say goodbye!  It was one thing I didn't get to do to my Grandfather when I was younger, and it is a regret that I still have now in Adulthood.

So this time, I explained that when you die, your soul and your heart goes to heaven first, and that we then have a funeral so that we can send their body to heaven too when his family is ready to say good bye to it.  It kind of clicked with him.  He went to the viewing, and put his beautiful little gifts inside and said goodbye, he sat ever so quietly through the funeral, which for anyone who knows Boogie personally this is a HUGE achievement... We then walked behind as he was taken to the car and guard of honour as it drove towards the street.  It was at this moment that his poor little self broke down.  And it was more than heart breaking to watch.

I squeezed him sooooooooo tight!  It wasn't one of those small crocodile tears type cries, it was a gulping for air, whole body type cries.  And as I held him, chin resting on my shoulder I heard the majority of the other guests attempt to hold back their cries too!! He lost his soul mate.  His partner in crime.  He was heart broken.  And I couldn't fix it. Suddenly though he proclaimed: "So is this car going to take off now and go to heaven?"  I couldn't help but giggle, no mate the rainbow needs a runway, for him to take off first.  His innocence was back!!

I love that he looks for rainbows... To him rainbows signify his Poppy John looking out for him, and now Poppy too .. I love that it is winter and there is plenty of opportunities for him to see them at the moment.  I think it will let him have his thinking moments, and know that Both Poppies are looking out for him, Forever!  I love that he has that closure in his life and that he can have that little moment, whether it be out loud or to himself.  As much as I am a religious person, I have brought him up with light touches of it - Heaven etc, but still giving him the innocence for him to learn and decide what beliefs he will have one day when he is good and ready to understand it.  He amazes me every day with his resilience.  I can only hope he grows up to be half the man his Poppy was, he has been such a HUGE part of our lives over the years.  And his cheekiness will definitely live on in Boog! Hold your loved ones tight, you just never know when we will stumble over that rainbow! xxx 




Thursday, May 29, 2014

My $7 Rant ...

I don't normally do this ... But here it is ... My $7 rant!!!  Any of my followers who aren't in Australia, will glaze over right about now ... But here I am having a rant over $7 .. well $70 in actual fact.  No strike that cos I get bulk billed too .. make that $140...   Plus more potentially too with all of these fees on hospital services and scripts too!!

Over the last few weeks a few people have made their worldly opinions heard on one media site or another, over what's the big deal with this $7 doctors fee... The new taxes... The cuts that are being made in the new budget... Oh my god why are they all having a whine or a whinge about it?! Why don't they get off their fat lazy asses and go and get a job?! And I am getting sooo fed up of holding my tongue... So here I am opening my big fat mouth hehe

Well let me tell you how it will affect me and our life and maybe you can stop and think outside your well paid... potentially 2 income healthy family bubble!!! 

My life story, not that I usually splash it across my personal profiles, is that of an EDUCATED mother of a child with Cerebral Palsy, Anaemia, Thalassemia, Severe Asthma, ADHD, Sensory Processing Disorder.  Who used to work full time. In fact 2 jobs (at one point 2 full time jobs) right up until the day I gave birth ... EARLY!  I had never been out of paid income until the day I had my son, in actual fact, it wasn't unemployed until my son was 6 months old and it dawned on me that he needed more help than most, because he wasn't just a pre-term baby with nothing wrong, he had special needs.  And LOTS of them!

Special needs means LOTS of care, appointments, money!!! Money which I could earn, if I put him in an institution.  How backwards of me you say?! Too right!! That is why I EVERYDAY fight tooth and nail, for my child to have the best life he can, under the circumstances - but some people do still do it!!  Don't get me wrong, what I wouldn't give to have this mystical job that pays 150k a year for me to work from home and look after my son at the same time as ferrying him to his plethora of appointments (WHICH AREN'T FREE), and all the behinds the scenes therapy I do, unpaid in our own home.  The home which I have to fight for every damn day to keep a roof over his head!

I have been up until recently have been receiving a measly sum of $11 child support of his father (PER MONTH), whom we have no contact with, because of having to get a VRO out on and whom refuses to do his taxes to spite us - well not just us turned out there were 5 other mummies in the same position that I was totally utterly unware of for 5 whole years of my life - I digress.  Which comes no where close to covering his $150 worth of life saving meds every month.  I refer to them as life saving, because lets face it... Without the plethora of medications he takes for his asthma and thalassemia etc, he would not be here..  Not to mention the botox which I can't even put a price tag on every 16 weeks to help him - more movement than I could have ever dreamed for him.

Include then the cost of a normal child, because obviously, he can't live without clothes, food, water, electricity to run his nebuliser for his asthma meds. and shoes to fit over his leg splints, because lets face it the $6 pair from Kmart that I can afford, just won't fit them in!!  Oh I almost forgot and a car to run him to every damn appointment at every end of town. Just so he can live some sort of a life that isn't confined to a wheel chair with no prospect on life.  Couple that with the roof over his head, my budget is soo damn tight, that I buy second hand clothes (mostly new) off people that have been to sales and had it sitting in the back of their wardrobes for months, just so I can have some clothing on my own back.

I forego EVERYTHING I possibly can, so that my child can have what is considered a normal life!!

BUT LET ME TELL YOU WHERE THIS $7 COMES IN ... 
Well normally ALL kids are bulk billed and they are going to be charged too, plus us people that incomes are sooo low that they actually get a health care card.  I receive a carers pension, yay a couple of dollars to put back into my tight budget.  But lets face it, what employer is going to employ me full time at this point... When I have to take a splice out of every day to take my son to 1 x physio appt.  1 x OT appointment & 1 x hydro therapy appt. plus pysical therapy, SOS feeding therapy, Sensory Integration therapy,  homework , so needs help with the writing, holding the books to read etc.   Plus all the hospital/sick time because of his severe asthma and anaemia. That is without taking into any consideration any doctors, paediatrician, specialist, or other time off for general sickness.  Tell me when I have the time to make this $7 back by going to a real Full time job.  In actual fact it isn't $7 and yes they have capped it to 10 visits, but it is more like $140 a year (if you include both of us remember).  And that is nearly 3 WHOLE therapy sessions, which some weeks I struggle to pay for.

If I take into account that fact I will be losing FTB B so I am already $102 worse off a fortnight.  and then throw in the extra money they are going to be putting on his scripts which already come to nearly $150 per month is not going to be cheap!! Couple that with all of my doctors appointments, as with the exception of his cerebral palsy, I have an identical medical make up as my son.  Anything that we go to emergency with may or may not be charged for also if they deem it to be non emergency (which if I am honest the majority of  hospital visits are in the grand scheme of things!!)  If I take ALL of these little dollar signs into account, on average, as long as we aren't sick and need antibiotics too.  GOD FORBID!  We are losing $2,892 give or take A YEAR!! ... For someone who only makes on average $18,000 a year.

So yes for those of you that, are earning big bucks, and are in a healthy relationship that is working out for you, and you are living the DREAM of a perfect family in perfect health, with the perfect family and home life balance.  I am extremely happy for you (not jealous at all because I will be there one day), but really does it give you the right to shit on my already pathetic parade?  I didn't choose this life for my son, it chose us, I had no control over any of it.  The puppeteer whom ever he may be controls our strings and we are just part of the show at this point.  I know one day when he is older I will be able to have my head held high again and have the perfect family time / work ratio when he can do some of the care himself and there are less appointments, but until then...

Can you do the maths... and tell me how that $7 and other cuts don't affect us little people who have paid their dues for the last 20 years - doubly for most of it!! If they think that he is such an amazing treasurer.  Can he please come and fix my budget and tell me how I can make it work - How I can fit in another $7 a week because I really thought I had it nailed!! Please!! I'll even pay him $7 for the trouble!

Sincerely,

Me!













Monday, May 12, 2014

Ooops Sorry

Ok ... Soooo it has been a while .. Things have been crazyyyyyyyyyyyyy busy for the last 10 weeks!!!

Somewhere in the middle there was Boogs birthday ... He turned 6 ... and my god I am feeling sooo much older!!  I have probably put on at least 4/5kg oops!! Yay for healthy winter eating though.. I think it is funny I always lose weight in winter and eat healthier ... there is something about the 45 degree summer nights that just keep you out of the kitchen ... and I really can't eat when it is ridiculously hot .. makes me feel sick..

Other things keep us busy have been court cases .. I am glad to report that we have a piece of paper *rolls eyes* .. that is supposed to keep us out of harms way for at least 2 years ... - yeah ok ... The car decided it was on its last legs .. so had to get a loan to deal with that .. but have something shiny and new now .. so that's a bit of fun!! Haven't had anything shiny and new for myself since before Boogie was born!!

Anddddd my mum has sold our family home of 32 years to move onto bigger and better things with her fiancĂ©e ... Don't get me wrong I am very excited for them  .. The new house is GORGEOUS .. little bit jealous actually ;) (nah not really - it has a pool and a jacaranda tree poking over the back fence .. and I know what it is like having to deal with our pop up pool let alone a REAL pool filter lol) .. with it brings lots of happy and sad memories as we sift through 32 years of clutter and memories ... My blissfully happy childhood and lots of heart ache in the last decade.

On top of that we have had a busy few months of appointments ... A new paediatrician who has diagnosed Boogies sensory processing difficulties officially and added an ADHD diagnosis to boot!! Yep .. as if life couldn't get more hectic ... With that brings nothing much hehe No medication - which I wouldn't want for him anyway ..  knowing that medication would heighten his sensory problems and make day to day life quite unbearable if I were to do so... and the potential of psych visits later on.  But apart from that .. I am doing EVERYTHING the right way!!!

WOW!!! Do you know how good it is to hear that come out of one of the top Paediatricians mouths in perth is?!

I'll tell you!!! AMAZING!!!

Doing SOS food therapy is a big tick in his book... And sensory integration .. Physio .. OT and speech ... He is though referring me to another Hearing specialist to get me a second opinion on what I think are his sensory problems interfering with his hearing tests.

His MRI is booked in for next week.. So fingers crossed we can officially rule out a tumour *Please keep yours crossed for us too* ... And because of it .. he is having this week off school ... The teacher has sent home a nice HUGE pack of school work so he can keep up!!! WHICH I LOVE!!! And it feels like finally things are clicking into place!!!

Mums big move is tomorrow!!! I can't wait for the next path we are all on ... Things are finally clicking into place on the home front .. with the exception of poppy who has not been well in hospital for the last 9 weeks now .. But he comes home tomorrow too so hopefully things will be a bit more cheery for him!!! BUSY BUSY BUSY week ahead ... Hope you all have time to scratch your head this week .. we won't :P Mothers day got post poned until next weekend so we can all celebrate it together  .. Anyway until next time .. I promise to try a bit harder and not make it soo long between blogs again ..

Sweet dreams peeps xox



Wednesday, February 19, 2014

Knock Us Down Another Peg Why Don't You!!!

So as if January wasn't busy enough ... So comes February with it's knock out blow *sigh*

Yep ... as if things weren't complicated enough ... after 4 separate hearing tests in the last 12 months they have come to the conclusion that Boogie has 70% hearing loss ... He will have to do a hearing aid trial ... an MRI under anaesthetic to find out WHY?! And if his hearing aid trial is successful will be a candidate for a cochlear implant ...

The words why us came up a few times this week ... as if his little body needs anything else ... and as if my body can handle any more stress at the moment either ... I have been extremely run down ... having a bacterial sinus infection since November last year ... which has gotten into my lymph nodes ...

So just in case you think I am being a bit lazy ... hehe ... well sort of .. but I have been swamped on top of trying to recuperate myself ... these anti-biotics and pain killers for the lymph nodes that are protruding from the back of my skull are knocking me around a bit *sigh*

But we will plod on ...

Just wanted you all to know we are still kicking ...

We have had first day of year 1 since I wrote last .... Botox and lots of clinics and therapy and this new diagnosis ... so I will catch up .. I promise .. even if it means doing a couple of post every few days to catch up :)  ... Ok off to have an hour nap before I have to pick him up and do therapy oh and homework!!!!!!! Since when does a 5 year old have an hour worth of home work everyday?! lol

lol out of here - Hope you are all still kicking too!!! Give me a sign of life if you like ;) 

Wednesday, January 15, 2014

Crazy Hectic Crazy

School holidays are always an adventure aren't they?!

Last night after dinner ... We went to a playground that I have been meaning to take Boogie to for well lets face it .. MONTHS!!!

I have pulled into the car park a few times ... and it has been crazy busy psycho ... The carpark is small .. there are no Acrod bays even close by ... the thought of actually enjoying our experience there when it is a ENORMOUS playground near a cliff edge .. albeit fenced in .. Scares the CRAP out of me!!

But last night .. under the guise of the evening lights blinking on .. we enjoyed the WHOLE playground to ourselves... Not only was it sensory bliss ... We could take the time to walk through the huge maze of a wooden ship hull .. he didn't get knocked over once ... there was no hands over ears ... he wasn't rushed down a slide ... and more importantly I wasn't asked 10 million times what is wrong with him!!!

I guess the biggest thing I find wrong with the latter is that yes he has a few diagnosis' BUT he is a normal little boy ... he isn't intellectually disabled ... he understands everything ... and if he doesn't understand something he will seek out what it means to him ... he is only mildly globally delayed ... And I HATE when someone approaches me and asks what is wrong with him... Usually he is happy to tell people about his cerebral palsy ... But with that sometimes the car ride home brings ... The what .. how ... and why questions ..

I can't lie to that little face ... In fact I find it really hard to lie altogether ... *Insert funny story about how I had a second Television delivered to my house and told them the truth that one had already been delivered .. to the unhappy glances of my brother and partner at the time*  It is soo confronting when he asks when he will get better ...

Even worse at the moment is his high expectations of his life .. His current life goals areeeeeeee ... To be an Engineer ... who builds robots to, "help other kids like him." A race car mechanic & Drum roll please ... A Fire fighter ... I really don't know how I am going to tell the little boy who can only just walk because of the miracle that is Botox and extreme physiotherapy sessions ... that it might never eventuate ... So instead what do I do?!?!?!?!?! ... I commission all the Poppy & Uncle figures in his life to build him his own fire station and he can be my mini fire fighter in the back yard lol ... Checks the fire fighter box right?!

Yep I think so too..  It isn't quite finished yet ... it needs a door and the windows drilling out ... and then the roof top is going to have white picket fencing around it ... And my youngest brother is going to build a big metal fire house station for his birthday ... He has been online with me the last few days ... so we can pick out a lounge suite for it .. because that is what he wants for his birthday!! LOL .. The things we do huh?!?!!

Just call me crazy ;) ... And here you are all wondering where my crazy mummy namesake was hiding at the moment ... BAM ... It's here :P  Enjoy!!!! xx


Gratuitous Fire Bell Shot!! 


Getting there!! Thanks Poppies & Uncles!! 
















Wednesday, January 8, 2014

Well deserved...

I'm Backkkkkkkkkkkkkkkkkkkkkkkk after a well deserved break ready for the new year!!! (I hope)..

Well nearly all of me is back anyway... I can't wait for this month to be over so I can talk to you about a whole mess of things I haven't be able to otherwise vomit all over a blog page .... There are 12 sleeps until Court over our big messy situation at the moment ... and it is consuming me!!! Not for the lack of trying to get it out of my brain ... But because I am having to write witness statements and collect them from everyone else that is appearing on the day ...

I just want my life back ... I am over the emotional roller coaster I have been on since November now .. all for a piece of paper that really doesn't do anything anyway.  It is ironic that I count down the sleeps .. as sleep is not what I am really doing at this point... To say 12 nights of torturous nightmares would be more indicative of what I am experiencing.  


ANYWAYYYYY ... The only thing I can really take from these last 5 weeks are that we have had SOOO many sensory gains with Boogie!!! With Christmas and our successful buffet meal .. he has tried SOOOOO many new things!! Foods that I would never have even imagined he would put in his mouth EVER!!! Pastizzi is a Maltese savoury pastry that I grew up eating with my dad being Maltese and guess what?! He ate a pea one ... A Pea Pastizzi ...  It has PEAS in it!!!!!! lol 

I think in celebration I will have to share the recipe with you ... I am just soo damn excited!!!! 




Pastizzi tal-Pizelli

175g dried green split peas
Bicarbonate soda
1 tablespoon olive oil
1 spanish onion, finely chopped
2 garlic cloves, crushed
3 teaspoons mild curry powder
1 Tin of corned beef
4 sheets frozen puff pastry, partially thawed
1 egg, lightly beaten for brushing

Method

Soak the peas for 5 hours or more. Wash in plenty of salted water, adding some bicarbonate soda to the water. Then cook the peas until they are very soft.

After cooking poor into a colander and drain well. The less water in the mixture the better.

Fry the onions in oil with garlic along with the other ingredients. Add the peas and corned beef towards the end, mix well and season to taste.

Roll out the puff pastry thinly and cut out circles about 9 cms in diameter. Egg wash the edges. Put some of the mixture onto each of the circles on one side. Fold the pastry circle in half and seal the edges together with a fork. 

Brush with egg and bake at 160 degrees (fan forced) for about half an hour or until the pastry is golden brown and flaky.

Please note they stay quite hot in the middle for quite some time ... they can be eaten at room temperature but taste best warm!!

ENJOY!!! xXx




Yep Picture borrowed from the Good old land of Google ... thanks :)