Wednesday, May 29, 2013

Some Things You Learn The Hard Way

Up until now .. I have had these check-lists in my head .. for me .. and boogie .. but I have never put them in writing ... All things considered we have life pretty good ... mostly because I have my AMAZING friends and family around me AND because I have the most beautiful little man who makes me smile - when he isn't breaking windows and running amok!! lol  So here they are ... the things I try and keep to in my life and the things I want to instill in my little person ..

1. Treat others with the SAME RESPECT you would expect from them.  You don't know what they are dealing with inside... If someone was depressed ... it could easily push them over the edge.
2. Random Acts of kindness ... Put a smile on someones face ... And know there will be one on yours by the end of it!! 
3.  Holding a grudge will chew up more of your energy than you should really waste on a person.. and NEVER go to bed on an argument!!!!!  These things have taken me at least 4 years now to get back in my head and regular life routine!!! Think of all that positive energy I have wasted in the mean time .. 
4. Believe it or not .. No matter how much of a good person you are ... Bad things can and will happen to you ... It is the lesson you learn from it that will make you stronger and a Better person.
5. A good cry makes everything feel better ... Let it all out .. even if you just pour it into a pillow .. Things will ALWAYS look brighter on the other side!! 
6. Take the time to smile!!! It won't cost you anything but you can gain everything from it ... If this means something soo simple as hugging your little person or making him giggle .. It is totally worth it!! 
7. If someone asks you if you need help ... NEVER SAY NO... chances are you will probably need that help 5 mins or 5 months down the road ...  Soooooo hard ... and something that usually eats out my conscience on a daily basis .. but slowly and surely I am learning to say YES!!
8. Love yourself!!! Nobody will love you unless you can love you!! Inside and out!! 
9. Always plan for the inevitable ... If it doesn't happen then you might have an awesome rainy day fund for the future.  
10. Keep yourself healthy first ... If you don't then your not going to be able to look after the rest of the happenings going on in your life!! 
11. You can't change other people ... Only they can change themselves!!! And if you push them to change .. they never will!! Focus on you and changing yourself for the better ... maybe they will see that and want to become a better person themselves... If not then they probably don't really belong in your life anyway.

12. Have high standards ... Yeah it is ok to make a mistake once in a while ... But don't go back there .. raise the bar every time and you will eventually be floating amongst the stars!! 
13. I know this one sounds religious.. BUT... God wouldn't have given you something you can't handle!! You are always stronger than you think you are!! Pushing your boundaries will only make you stronger!! 
14. Don't Let ANYONE bring you down. People only judge other peoples lives because they aren't happy with their own!! Let them be their own undoing .. not yours!!

Well that's it ... My random ramble for the day ..  Some of them have been passed onto me from my parents ... and the rest I had to figure out on my own ... I know Boogie will have to figure some of them out too before he believes them for himself ...  What life lessons have you had to learn the hard way .. or did your parents give you some pretty solid advice growing up too?? 

Sunday, May 26, 2013

Hear That Silence? No Me Neither!!

What is supposed to be a mummy free morning with Boogie at school ... Has turned into a coughing fit spectacular ... Normal physio is usually done on his feet and legs and arms .. But today I am finding myself with him laid across my lap tapping him out to break up the mucus in his lungs ... He is feeling pretty sorry for himself .. Confined to the couch watching movies ... Oh such a hard life!!! *rolls eyes*

You wouldn't think that getting a kid to sit still when they are sick is hard ... But hopped up on ventolin... His usual steroid preventers and some prednisalone to boot ... Is proving a bit of fun .. Definitely helps with the tantrums (not).

So today apart from school work and educational games on the I-pad we are watching mummies favourite kiddy movies ... I'm not talking disney this time so you can relax ...  Drop Dead Fred!!! Charlie and the Chocolate Factory (the original of course) ... AND of course the Wizard Of Oz :) maybe after he has gone to bed tonight I will follow that up with Return to Oz ... Its a bit dark for him I think when he is hallucinating on a fever. 

We are part the way through Charlie and the Chocolate Factory right now and I just got asked to pause it so he could ask me a question ... Ok no probs I will entertain the idea lol .. Boogie said "Right mummy ... you have 2 options" ... ok I'm listening .. "Well you can either take away the small steps ... orrr take away the big steps out the front mummy so we can build a chocolate fountain and river" LOL ... It's only a movie Boogie .. sorry!!! Don't kids just say the Darnedest things?! Have you or your kids ever come up with some amazing ideas out of the movies? 

Wednesday, May 22, 2013


There are a few small honours of having a special needs child ... and the biggest one is the countless hours of GIGGLES ...  SMILES... LOVE and HUGS!!

I can't get enough of them!! Especially the giggles ... Having hypersensitive Sensory Processing disorder ... even the smallest tickle is a bunch of giggles ... I am sooo lucky that he doesn't hate them .. he giggles his little bum off!!  Last week we were given tickets to see a magic/comedian show .. It was put on for some of the kids through the cerebral palsy centre and some other associations for the kids ... And Boogie loved every little second of it!!

He is now obsessed with magic tricks and telling silly little jokes from the show because he thinks they are hilarious .. and in the words of the comedian from RAZZAMATAZZ it is hilariously "SEXY" he pulls this funny little expression and does his 2 thumbs up just like Marty Putz from the show. It was such a fantastic night out between the fantastic magician who involved some of the kids to the absolutely hilarious who had Boogie in stitches.  Literally there were a few points during the show where we had the eyes of maybe 500 people on us because his laugh is just soo damn contagious... He was laughing well after the comedian had finished his skit.

We have been out this week and managed to score a box of magic tricks aimed at kids 5+ for only $10 from Target and he was soooooo excited to be learning some magic tricks ... He spent the morning after doing his school work, trying to figure them out and giggling his bum off at himself for his little jokes that he thinks are hilarious.. It is soo cute .. and I am soo glad that he is happy considering his asthma is playing up ... It is definitely the little things that make you happy!! He is one of mine ... whether he be smashing windows *sigh* or just giggling his bum off .. I am glad that I have him!!! 


Are you a sucker for magic tricks?? I bet you all have a funny to share with me us!! G-rated so I can share it with him of course.... Ready ... Go ..... 

Happy Happy Joy Joy Happy Happy Joyyyyyyy

Have you got the song stuck in your head now??

So the day started amazing ... as per usual ... Boogie woke up sick with a nasty cough ... after having no sleep and ventolin every 4 hours ... I woke up in an awesome mood even with lack of sleep ... He ate breakfast ... he spent the day playing school games on his ipad ... and got to go play angry birds while I hung out some washing.... not on the ipad of course because I reserve that for all things school... I refuse to let him have it on there he turns into a little angry bird all on his own lol  ... He uses some uno stacko blocks with some little figurines we got from Hong Kong last year and builds AMAZING constructions.

Uno Stacko Blocks and Figurines

Anywayyyyyyyyyyy after I had finished it was time for lunch and I asked him to pack up the toys while I cleaned down the table for him to have some lunch ... which I might happily add he ate all of that too... Why did he eat it all?? Maybe because he knew he was in BIG trouble!!!  After what seemed like an hour waiting for him to pack up I heard him banging on the glass ... He was antagonising the dog banging on the glass ... goading her into jumping up from the other side ... *sigh* ... I tell him off at least 5 times a day for doing it ... because no sooner does she come inside it is like game on between the 2 of them!!!

Today was no different ... telling him not to bang ... yet he continued hitting the glass ... being hopped up on ventolin and redipred steroids for his asthma he wasn't listening ... That one final pounce between puppy and child at the exact same second out roared a nice big smash ... a shard of glass inches from his face, I put my hand in front to shop it from hitting him and got a small graze and cut myself .. They both knew they were in trouble ... the dog bolted as she usually does... So I checked boogie over and moved him into the lounge room and did the exact same thing for the dog ... 

The lesson I think has sunk in today for at least one of them ... but why did it have to cost soo much?! lol Thank god for insurance and only having to pay the excess!!! Have your kids learnt anything the hard way?!

Tuesday, May 21, 2013


Ok here it is ... The rant of the century ... You can probably see the steam coming out of my ears ... I still haven't calmed down and it has been over 3 hours!!!!  My Boogie who supposedly has an aide at school to make sure he doesn't hurt himself ... Fall over ... has help with all things personal hygiene because they can't change a bloody tap over to a flip tap .. and to make sure he has help with ALL of the uneven surfaces at school which is basically the WHOLE SCHOOL ... who has .8 aide time .... Didn't have an aide today ... And guess what ... Surprise surprise ... He fell over and bumped his head ... not something little but head to concrete with a HUGE lump.... The only good thing that came out of today was that for once ... they rang me and told me ... *sigh*

As if separation anxiety on his part wasn't enough ... The fear of will my kid have someone who knows how to deal with his asthma ... will someone be watching the signs and tell him to slow down.. and not run cos he is struggling soo much to the point he is struggling to breathe?! Will someone be there to make sure he doesn't end up with concussion because some kid accidentally bumped him ... Will he drink enough ... Is someone actually going to make sure he eats and drinks?? GRRRRRRRRRRR

Some days it is just too much .... He comes home the middle of summer with cracked lips and sunken eyes ... because surprise surprise his teachers aide hasn't made sure he has drunk or eaten anything out of his lunch box ... She just lets him throw it in the bin ... and he doesn't hide the fact he has done it ... I ask him ... and his drink bottle comes back full of water just like it went there ... WHERE IS THE DUTY OF CARE??
He has someone there who is supposed to help him ... that the government pays for .. because he has the RIGHT to be able to equally participate in school and be safe ...

So what do I do?? Who actually listens?? I swear every single time I walk into that office I can hear the whole faculty simultaneously rolling their eyes ... Pushy mummy is here again ... Don't you mean mummy that wants a simple health of her child to not deteriorate while he is in your care??  It makes my blood boil ... and it is days like today that I feel like wrapping him up in the giant metre long roll of quilt wadding; a hole for his eyes, nose and mouth and holes for his legs and arms to poke out!!  What is sad is that some days it probably wouldn't be an overreaction!


Anyway he is ok... have to keep him awake for a few more hours ... blah blah blah ... and it is documented with the doctor ... you know just incase ... But honestly .. Home school is looking like a really good option right now ... But he is such a little social butterfly .. Stuck between a rock and a hard place tonight ... Had I been a school teacher pre-mummy I don't even think I would bat an eyelid at making that decision .. He is such a happy kid there most of the time ... and it isn't his teacher who decides it is the schools decision how much of his aide time he actually receives ... Hmmm

Have any of you home schooled or thought about it?  Have you ever reacted badly to something that has happened at school?

One Unhappy Little Camper :( 

Sunday, May 19, 2013

Driving Miss Mummy Bonkers!!!

Ok so Sunday I like to make the whole day about Boogie ... No cleaning (or if so very little) and play games watch movies together or generally do something fun ... Yesterday was no exception!!  Now I don't know if I have divulged before now that Peter Pan is one of Boogs top 5 movies!!  We have his whole bedroom decked out in Peter Pan splendour thanks to the GRAND Christmas effort from Grandma and her partner!!!

And the Mural she had painted!!

Grandmas Amazing Bed Effort!!

So after seeing Peter Pan in the Hoyts Jnr. section on the weekend, I knew even after watching it a minimum of 1000 times in the last couple of years that we had to go and see it!!  $7 with a kids size bucket of popcorn ... How could I go wrong??  I didn't tell him what we were doing and remained close lipped every time he asked me... Just telling him the shops every time he asked.  But as soon as he saw we were parking upstairs and progressed through those doors... He knew!!! There is nothing else really on that floor to do except eat waffles and ice cream orrrrrrrr play in the timezoney type place.  After fighting with the ticket machine (as I had prepaid for them online) for what seemed like half an hour we joined the queue to collect our popcorn oh and a drink of course as they go hand in hand!

We ended up the very last cinema right at the very end ... Which for a kid with Cerebral Palsy .. and a mummy laden with bag ... 2 popcorn and 2 drinks ... wanting to be carried was a long shot!!  He did his half limp half run for most of it and then STUPID MUMMY who at the time thought it was a good idea to sit in the back row... ( I do this so there is nobody behind me coughing and sneezing on me - YES I am a germaphobe) Let me tell you it was a LONG trek up those stairs!!! *sigh* I will have to remember that for next time.

Sitting down smack bang in the middle of the back row (Just how I like it!!) Boog started scoffing his box of popcorn... Secretly I was worried ... he has a really bad gag reflex due to his sensory issues ... Don't get me wrong I loved the idea that he was eating ... but the fact was an hour before he had 2 giant pieces of fruit toast slathered with butter and Vegemite (yep I said it - his dad started him on that combination when he was little in hospital and eats the combination himself - YUCK) as well as half an up and go choc milk drink... I knew it just wouldn't stay down... How could it?! lol

Anywayyyyyyyyyyyyy the adverts started ... he was sooooo excited ... the lights dimmed ... and then the tell tale Peter Pan song came on ... he started bouncing on the chairs in excitement!! I kind of felt sorry for one lady in her 60's I would say ... She braved a morning kiddy session on her own to come and watch the movie ... clearly she was there alone as she sat in a row all by herself.  There were kids running around the theature and here is Boogie sat right behind her reciting word for word the whole movie... Don't get me wrong I didn't find it annoying at all I was quite proud and it was soooooo damn cute!!! But this poor lady was getting an echo of the movie and there was no surprise she knew what was coming!!  He only paused to take GIANT mouthfuls of popcorn and swigs of lemonade!!

Now what I haven't told you is Boogie has a tell tale sign he is going to throw up!!! He does this HUGE shudder like someone has walked over his grave and pulls a funny face ...which in the dark you can't really see.. But I felt it ... reaching for my box of popcorn ... He let out a big fat BLERRRRRRGH!! .. You know the sound ... the one that you hear that quickly turns into a smell that fills your nasal cavity and makes you want to hurl yourself!! I usually have a pretty strong stomach with stuff like that .. but the stench of the choc milk, fruit toast, vegemite, popcorn and lemonade was HORRIFIC!! I proceeded to clean him up and the seat ... oh and the floor too with wetwipes!!! He spent the rest of movie on my lap being sooky ... smelling like vomit cos you can never get rid of that smell and a semi blocked view due to his head being in the way.  I guess the only good thing that came out of it was at least he didn't wait til he got to the car to vomit ...

Must say though ... I thought with them releasing Peter Pan on blu-ray that they would have re-worked it and made it 3D like they have been with all the other re-released disney movies :( ... We are destined to watch it in 2D for a few years to come I think!! What Disney movie are you over watching and hearing about ... I bet there is one that just drives you BONKERS!?!

Saturday, May 18, 2013

That Story ...

We all have one of THOSE tales to tell for their 21st ... and up until last weekend (Mothers Day none the less) I didn't have a good one to tell ... Until now!!!

Was cruising along ... just come home from a yummy lunch... put boogie in the bath and run around the house cleaning up while he was singing to himself and washing too maybe? All of a sudden there were BLOOD CURDLING SCREAMS coming from the bathroom!! I don't think I have ever run soo fast!!! 

I made it in record time from one end of the house to the other in 5 seconds flat!! None of this sissy running stuff.... I was like a fully fledged Olympic Hurdler... Ducking and weaving around matchbox cars and Lego!!
To arrive at the top step of the bathroom and see him with a number 2 squished in his hand ... he was inconsolable!!!  He had .. you know .. "done it" in the bath and was trying to shot put "it" into the toilet!!!


Mr sensory had slipped over mid thrust and it had squished in his hand *rolls eyes* and he DIDN'T like it one bit!! LOL ... Yes laugh ... laugh all you want ... I did too!! What else was I supposed to do ... rush over to mr I am covered in poo and cuddle him to bits?! I think not!!! lol ... I hosed him down with the hand held shower packed him off to the bedroom and had to scrub BLEACH every square inch of my creamy/white bathroom *sobs loudly*

That's it!! Have a good laugh at my expense!! I don't mind!!! I had a pretty good run until now... Apart from a small poo finger print painting down my hallway when he was 3.. I think I have had a pretty good run!!  What stories are you saving for your kids 21st birthdays?! I bet you have some doozies?! 

Friday, May 17, 2013

Going Old School!!!

Do you know it is only a month until all the christmas toy catalogues start pouring into my mailbox!!!!!!  That is 4/6 weeks until I see the specials and about 8 weeks until we get to lock them all in!!! Excuse me while I get a little excited!!!


I love toy catalogue time ... and boogie admittedly has ALOT of toys .. but only because I am super organised ... I do all the cousins .. nieces and nephews and pay it of $10-$20 a week until christmas!! and when it rolls around all I have left to do is the few close adults that I exchange gifts with!! .. Makes life soooooooooo much easier!! And with boogies birthday only 10 weeks or so after christmas I tend to put that stuff in the laybuy and store it too.. 

But what do you get the kid that already has everything?! Itunes vouchers for his ipad that is already full?? More ninja turtles and lego?? Noooooooooo this year ... I am going old school ... and building a proper cubby house out the back with a tin roof... I am aiming for a 2 story fire house (if it looks anything like what is in my head lol we'll see)  ... Oh and a rock em sock em robot game off ebay and a few board games of course!!!

I love that board games are now back in!! Being soo sick as a kid growing up we used to play them all the time, I have soo many happy memories playing board games with my parents and brothers in the middle of winter on the lounge room floor while it was pissing down with rain!  What I love more is that I have some great friends that love board games too ... I love that we have game nights ... and I love that mason sees that and participates ... he loves playing them ... We have kiddy versions of UNO ... he has Kerplunk ... mouse trap ... Operation... Ducking for duckies ... Hungry Hippos... Connect 4... I love that all things considered "retro" even though they aren't old enough to be ... (or maybe I am just getting old now *sobs quietly in the corner rocking back and forth*) Are back in.

It makes for a great rainy day inside ... Great for his thinking strategies (he has already learnt how to cheat at some games) ... and AMAZING for him to do when he is sick as he can't run around and play :) YAY I love that he gets excited to play them ... and when asked what fun thing he wants to do today .. he answers with play a game ... I love that he loves spending time with me doing something wholesome!!!  I think my favourites to play when I was younger were.... Upwords.. Panic and Mastermind oooooh and hungry hippos ... closely followed by monopoly even though I never won!!!

What was your favourite game... Do you still have them stashed away in your closet somewhere?!  I know I still have a few!! Are you and your kids bringing the board games of the 80's back?? 

Wednesday, May 15, 2013

Beanies, Hot chocolate & Cuddles Oh My!!!

Don't you just LOVE Autumn?!

I think being a winter baby I am partial to the season as it is getting cooler ... and as much as I don't mind (too much) the cold weather... I hate that it is a giant jinx on my little man's impending bad health months ... Our Thalassemia keeps us nice and cold - if only we were polar bears *sigh* ... Winter essentials are Thick socks ... Singlets ... Heat Packs ... Hot chocolate and Beanies!! It sucks that when we get cold we can't just heat ourselves up ... When our bodies are fighting off an infection/flu/cold as well it is like having the dreaded man-flu squared - our bodies just shut down ...

All it takes is one single bloody sneeze or cough from one random incubus of plague ... and BAM we are both sick for a month.. We both have iron deficient anaemia on top of it all ... so the lack of anti-bodies and the time it takes to build anything up is ridiculous ... You ask any of my besties through high school, how many days I missed ... and I was only there every other day ... I was ALWAYS sick.. and throw on top everything else Boogie has to deal with.. It is AMAZING how well he copes.  We are constantly doing homework and school work on his ipad (god's gift to sick kids!!)  So far we have missed 3 days of the first week this term ... only due to appointments, reviews, clinics, specialist appointments and therapy ... Pretty good effort I thought until he got a cold over the weekend that is affecting his asthma *sigh* But back at school today again!! Finally ... The ventolin and steroids he takes to control it make him absolutely bonkers lol ... and by the time he is starting to feel well again I am praying for a school day!! As long as he isn't too sick I think he likes going to PMH the most though even being sick ... I guess the fun trips upto the starlight room visit the captain starlights!! They do such an amazing job in there!! Cannot fault them or their ability to put a smile on every single little face.

Got a bit off track there but in all thats it .... Spring brings pollen ... Summer brings unbearable heat (not good for his temps) ... Full blown winter brings Flu a giant catastrophe in itself.. I guess there is something sucky about every season!!  They say that the season you were born is your favourite ... I don't mind it I guess it means bored games ... an extra doona and lots of cuddles!! If only there was a climate controlled bubble I could put him in!! lol What is your favourite season?

The Starlight Express Room :) 

Monday, May 13, 2013


So I thought I would share a little dream that I have had since I was little, and one I hope to accomplish on my years left on this forsaken planet :) 

I am a Disney girl, through and through! There are many movies in the disney family ... but I must say for me I love watching the old school Mickey and Minnie episodes.  Boogie loves the Toy Story trilogy and Disney cars 1 and 2 ... If I had to pick one movie in particular from growing up it would probably be peter pan or the little mermaid!! 

Anyway my bucket-list in life is to attend every Disney, Including an awesome Cruise on one of the Disney cruise liner ships - preferably to alaska! Not sure if it is going to be possible financially until I retire now as having a high needs dependant child costs ALOT but only time will tell :) 

I can't define the single moment in my life that made me a Disney girl, I remember as a kid sitting in my Nanna and Nannu's  lounge room, watching Looney Tunes with my cousins on Sunday mornings. So I am really not sure where this undying love of all things disney came from.  But what is not magical about all the perfect princess stories, and untainted g-rated humour of Mickey, Minnie and of course Pluto their fur-baby!   

But when I analyse it in my head a little. Isn't Mickey Mouse just the perfect gentleman? How lucky is Minnie mouse, I mean how many years have they been together now? And they are still the perfect couple! Neither of them age, they are adored by people of all ages, they are admired and they are the perfect little family every couple or family (including their fur baby pluto of course) should aspire to!! 

I love their mischevious nature, the fun that ensues and the magic of all things disney, every morning is a new way to make his life that little bit more magical.  Thank god I have my beautiful everloving boogie to cruise through life with (no pun intended) xx

Splitting Things Up!

You know those dysfunctional families you see in the movies and think wow ... it couldn't really be like that?!

Well that is us ... A big Ginormous multi split family lots of times over ... The best thing about it is celebrating things lots of times ... So one celebration becomes Many yummy lunches and dinners!!! One of them this weekend was spend at Elmar's ... And let me just say the food was AMAZING!!!! The salad I had was DIVINE and so was the banana crumble!!!!!  Boogie had a Bushmans tucker kids plate ... he picked at it but I loved that it had a few different things for him and his sensory disorder to digest .. nuggets, sausages, chips, apple slices, carrot etc... I like that he could graze with no pressure from me and I knew there would be a good selection of things on it!!

Elmar's in the Valley on Urbanspoon
My salad : Top Left... Boogies Finger food directly under & Bottom left the banana crumble

We did lots of art and craft over the weekend ... forgot to take pictures of the final product but this is what we aspired to make ... (will get a pic of them off my mum when I have a chance - oops) 
Our Inspired art and craft!! Obviously Ours looked just as awesome!! 

My Gorgeous Gifts!!!!

And then of course We had cupcakes and afternoon tea with my mum.  Woke up on Mothers Day with a sick little boogie :( ... He forgot where he had put his pressies that he had made lol which I didn't mind too much (until it got the better of me come 4pm and we went looking lol).  A beautiful little tea-pot with teabags and a cozy pair of slippers which I may or may not have helped him find :P

Anyway that pretty much sums up my days ... Hope you all had an amazing mothers day just like we did <3

Wednesday, May 8, 2013

Home is where the HUGS ARE FREE !!

No matter what... Hugs are free here!! 
(unless of course I don't know you cos then in my head it is not really free of stress - for me lol)

Hugs & Cuddles are our biggest comfort...
They are free of judgement.

They are full of Love.
And they come from the deepest part of our bodies!! 

Our hugs are like the best tasting hot chocolate in the world.  They are better than home made soup!! They fix absolutely EVERYTHING!!! 

A Mummy and Boogie hug when needed is all that matters in the world, it is protective, it is reassurance, it is trust and some days  just being cuddled up means nothing else matters.

Hugs are the last thing at night time and the first thing in the morning.  I can't think of a time where it has not been this way.  And I love that one hug between us makes everything feel better!  And I wouldn't change it EVER!!! In my head it means that any conflict, any frustration, any grumble or grievance is FORGIVEN.  Because no matter what .. I will love him .. FOREVER ... to the moon and back ... To infinity & Beyond...

And my super special squeezy hug to and from him means I know that we are as one in the same thought.  Even if only for that one little moment!  Some days there are lots of hugs and some days only 2 or so ... But not for one second do I ever want to imagine the day they dry up... Him being a teenager and not wanting to hug me after everything we have been through scares the absolute crap out of me!!!  My mum ALWAYS said to me ... never go to sleep on an argument .. and a hug fixes EVERYTHING!! If I could only teach him 2 things in the world ... they would be it!!!

Happy Mothers Day (in advance) for all you mummies out there!!! Especially mine and my Nan ... who have been there through everything helping us as much as they can!!! I can't wait to wake up to that special hug and smile this Mothers Day and spending the day with my Mum and Nan... What are you hoping to wake up to? 


So I haven't really said this outloud too much ... 

Before the last month or so ... I just thought they were little quirks... Not unlike my own.. He has such a weird take on life so I always thought it was all good.  Until it has really started taking over our life ... Especially with his non eating... and not wanting to experience new things.  The worst thing is.. until now I thought it was all in my head ... Alot like some of the other stuff that along with my recent past I was convinced by another party was all in my head too ... even though I know in my gut it was actually real!  I digress... Anyway this list of things has become more and more frequent and random to the point where I decided to corner my OT and say hey ... this stuff is really happening and more frequently than usual!!

So today we got our formal assessment back!! YAY!!! Guess what?! I'm not fricken crazy!!!!!! Woohooo!!!

Today there were observations of stuff that I thought I was the only person who noticed. Like......

* Since boogie was little he has always rubbed tags and things against his nose.  (Total anxiety reliever for himself)

* Wiping away kisses : Who would have thought it wasn't just a boy thing!!

*  Wiping his hands excessively when they are dirty/wet/sticky/touching something he doesn't like!!!

* Chewing / Sucking  his sleeves .. Jabjab (his toy giraffe) and collars

* Being a picky eater : all kinds of sensory eating, gagging, vomiting, chipmunk chewing (pocketing) and avoidance behaviour. 

* Being oversensitive of pain : A small bang some days can take upto 30 mins and lots of cuddles to calm him down.

* Hates bathtime, washing hair, water on face, wetwipes on face, clipping nails, hair being cut etc etc 

* Fear of falling, panicky, ridged and freaks out emotionally on anything including playground bridges or getting into the car seat anything that compromises his feet being on a hard surface.

* Afraid of textures, messy, wet gooey etc. He will go out of his way to avoid doing them if he can.

* When he was little in hospital having a meltdown .. if you didn't have his blankie, dummie and jabjab it wasn't going to end.

* Showing little or poor eye contact (try having a conversation with him at his level and his eyes constantly flit away you can't keep them on yours).

Anyway the list literally goes on .. but these are a few of the BIG  HUGE things we struggle with on a daily basis!! And.... *does happy dance*  ... it is no longer just in my head ... it is on paper!!! Don't you just love it when you figure something out and subsequently realise your not crazy!! Ok ok this may seem like something little to you .. But I have been battling it for the last ... ooooooooooh 5 years!! I think that is worth cracking open a cider to celebrate right?!  Hope you will celebrate with me :) 

F is for FAIL

Ok so last night ... we had the mother of all melt downs ... 

One of our safe foods was not soo safe ... and after losing 1.2kg in hospital (which took us a whole year to put on),  We refused to eat, which isn't really an option for us at this point.  Basically if we don't eat and start losing weight it is goodbye last scrap of normality, hello gastro nasal tube!!

Anyway without boring you with too many details I couldn't even get apple and sultana porridge down him, rice and chicken with tomato sauce or an up and go (our fall back for calorie intake).  There was screaming, pleading, and a whole heap of ice creaming and rocking back and forth in the corner, on my part!!

It is nights like this that I feel like such a failure as a parent.  Even though somewhere in the pit of my stomach I know that I am far from a failure, I mean look how far we have come, on our own.  If it wasn't for our rigid routine and the me as a mummy pushing for what we need we wouldn't even be here!! 

It is sad because after such a good day, considering he had professionals poking and prodding him for reviews with our school holiday drama.  We had a reasonably good day.  PMH, physio and the doctors.

Good behaviour usually costs me angry birds on my phone during the consult and a trip upto the 7th floor to visit the captain starlight peeps!!

He even had a special delivery on the doorstep when we got home (wish I could have captured the face as he was opening it) But I did manage to capture the many ninja faces of boogie upon trying our new delivery on!! Remember the special package from MummyLovesCorner we were waiting for??!!! IT CAME.. IT CAME!!!! Wanna see???!!! 

Introducing.... Ninja Boogie

Aren't they Just GORGEOUS?!  Can you tell which Ninja Boogie has a mouthful of waffle?! lol Does your kid have a latest craze or obsession? Ours is definitely Ninja turtles at the moment... As if you couldn't tell! ;) 

Monday, May 6, 2013

Green Eyed Monster!!

Can I just start by saying I am sooooooooooo jealous of all you mummies that got to pack a lunch and send the kids to school!!! Soooooooo totally jealous that it isn't funny!!!

We are now at week 7 of no school... The first week was him in isolation as he was to have his tonsils out ... Boogie was still in plaster to the knees due to serial casting oh and all our pre-op appointments which took a nice 3 hour chunk out of our Friday routine plus our normal everyday appointments made for such a busy week.

Week 2 saw him have his tonsils out on the Monday ... with complications!!! Yes we lead such a complicated life!!  Turned out he bled into his stomach and lungs and they had to inflate both of them to suck the blood out, I'm not surgeon but that sounds pretty complicated to me!!! To add to our misery we spent THE WHOLE WEEK in hospital due to him refusing to eat, drink and take meds.  Even the good stuff he didn't want it.  You just know in your gut that your child is sick if he is refusing to eat chips and chocolate!! 

Come week 3 I was rocking myself back and forth in that creaky bloody hospital recliner!! You know the ones I am talking about.. Those chairs that make that 30 mins between pain screams and observations absolutely impossible to find a sweet spot and when you finally do it is time for them to wake up again and try meds or obs *sigh* Towards the end of week 3 we were allowed home on "Leave".  Basically they'd had enough of him and his torture and after taking him off his iv 10 mins prior... let us home to try and see if we could get him to eat, drink and take meds there.

It didn't work though!!! Week 4 saw us 11.30 at night saw blood gushing out of his throat, one panicked child, one FREAKED out mum and an ambulance ride later, we ended up back on the same ward, same room, different bed.  *sigh*  Another few nights of doom loomed over us.  We ended up with a lovely older nurse (grandma of many) who had such a lovely no fuss stance on boogie!! I loved it!!! It is how I am at home with him... no more tippy toeing around pretending it was the end of the world.  He had the medicine forced down, and surprise surprise he started getting better, slowly but surely!!

Of course there was then 2 weeks of school holidays of which we were both too horrified to leave the house and obviously couldn't go outside the 30 minute radius of the hospital for 2 weeks.  So it pretty much left us with art and craft... movies ... and various normal things around the house!! 

Which brings me to week 7!!! This week!! TODAY!!! With the week from hell on its way!!  3 days sees 8 appointments... My pop is in the hospital too so taking nan to and from the hospital, and then the chores on top of that ... add in the impending bad weather ... Can't wait for thursday... back to school ... and a killer nap waiting for me on the couch!!!! 

Some of our art and craft efforts!! 

Were your school holidays as crazy as mine?! I know we all say we want an extra week cos they go to fast ... but I have been there ... I had an extra 5 ... Wanna trade? lol

Sunday, May 5, 2013

Sensory Heaven!!

Ok... So having a child with sensory issues makes even the funnest day difficult.  Something as simple as a dance party for your cousins birthday turned into 100 minutes of whingey, whiney, head tucked into mums crevices, hands over ears heaven.  

We went from being at the cuzzy wuzzies house... to total melt down as soon as the music started playing... I literally couldn't even sit down without boogie being all over me!  Anyone who knows boogie personally knows that he isn't a shy kid when around other children, he is usually pretty outgoing.. UNTIL they engage in something that just crosses his boundaries... 

Getting him off my lap took all 3 cousins repeatedly hounding him to dance ... 5 chicken nuggets ... 1 sausage roll ... a mess of tomato sauce ... and a flashing blue bracelet ... All so he could participate in the LAST birthday game to win a prize ... *SIGH* ... who ever told me that having kids was easy .... I challenge you to a day in my shoes ... I will even make them my sparkly red ones for an interesting journey!!!

Do your kids have any quirks? Wether they be routine, illness related or just something that makes you smile?

May the ..... 5th be with you?!

Ok .... So I forgot to press publish last night lol no need to hang and quarter me right?!

Thought I would share a flashback funny that I have from my childhood to do with Star wars..  Well not really to do with it but we were watching it at the time.  By we I mean my dad and I. 

My mum was off at work at the hospital my brothers were all tucked up in Zzzzz-land and dad put the good old vhs on the tv.  Yep I am a kid of the 80's (sobs quietly).  We were about half an hour in and lets face it I started getting a little bit bored... Back then I had better things to do with my time, like listen & dream all things Bon Jovi.  And I decided upon cleaning up everything from dinner, mainly putting a tin of beetroot away in the fridge cos I didn't get further than that!  Picking it up and then in slow motion dropping and trying to catch it, which yes stupidity prevailed and sliced a nice big chunk off the side of my thumb.  Dad didn't know where the blood began and the beetroot juice ended.  You could tell he was getting a little woozy! I ended up having to clean and bandage myself up and now have the scar to prove it lol.

So short of watching the movie we had some flashy star-warsy kind of fun anyway :)
Do your and your family have an inner nerd? How did you celebrate May the Fourth?

Friday, May 3, 2013

Beware : Cuteness Enclosed!

Maybe I should have some sort of disclosure waiving me on tugging your heart strings with todays post!! 
At the end (If you make it that far - cos lets face it, I got a bit off track today)There is the most super cutest picture of my little man!! (Hey, don't judge me I can be biased if I want to!!)

Soooooo when Boogie was little, I had to fight to get things (hats/beanies) on his head. It makes alot more sense now that I know he has sensory processing disorder not wanting to wear or feel things (well to a certain degree - I guess I will never totally understand, what is going on in his gorgeous little head).  But now he is a beanie kid through and through, and of course that has indulged me somewhat because back before I was a mummy & could afford to I LOVED to accessorize!!

Anyway back on track ... We LOVE Giggle & Hoot from ABC kids: I'm sure your all blatently aware of the super smexy jimmy giggle - what red blooded mummy isn't right?! Boogie was lucky enough to be given a super giggle T-shirt From his Uncy R. all inclusive including eyemask & cape.  So of course whenever we are in a super mood it is the go to outfit which he pairs up with his cute blue little skinny jeans and he looks totally adorable.  

Recently while wasting time, cos lets face it after the housework, physio, therapy and school based stuff is all done, if you don't want to participate in the lego building or make mess AGAIN with art & craft, there isn't much else to do when he is in his own little robot building lego extravaganza kind of world. I found a local lady via facebook surfing (gotta love time wasting) And she makes gorgeous little hand knitted EVERYTHING oh and beanies especially... Shout out to MummyLovesCorner  for our hoot tassled beanie cuteness!! Oh and the countless others that we have bought off you, angrybirds & our pending by special request order that I know is being sent tomorrow <3

Needless to say Super boogie loves it just as much as I do!! So where has my little Super Giggle & Super 
Hoot ramble come from?!

Last night we managed to score tickets to the live show that is coming in June and just the hint of going sent super boogie into a Flurry of excitement.  Giggle & Hoot among others have gotten him through super long never ending weeks of hospital and being home bound.  When he didn't have the energy to bounce around Super Hoot was doing it for him, letting him have just enough energy to giggle his way through an afternoon!

What is even cuter is that most nights when he is tucked into bed, he has a singing hoot, and we both sing along to hoot's lullaby, with the cutest little sentiment of telling him see you in the morning and him responding with the "hoot hoot"... Do I get a big gush of awwwwwwwwwwwwhhhhhhh from you all?! I know I do it everynight. In my head anyway cos you know none of the cool kids are talking to themselves nowadays!! But it is such a proud mummy moment for me,  2 years ago we were using a picture communication board just so I knew what it was that he wanted.  Obviously there were only soo many things it had on it, but everything else we just guesstimated our way through.  So Singing a song (one of my greatest pleasures in life) is like a tiny miracle sprouting to life, even though his words aren't perfectly articulated, it is a HUGE step for us!!! 

So thanks Mr super smexy giggle & hootaliscious this super boogie and super mummy post goes out to you for your countless hours of entertainment and inspiration! 

Wednesday, May 1, 2013

Normal Life : The best subject to procrastinate.

You know... I have never been a procrastinator until now... This single post has taken me at least 2 hours to press the publish button, and yet here you are reading it, like it isn't a big deal.

Well where shall I start?? Maybe I should not shock you with my whole life story straight off the bat. It can sneak out later when you least expect it ;) Like the perfect poker face, then BAM... I strike you down with a royal flush. Or not?! Who knows!

So here is a little bit about why I am here right now. I turned the big 3-0 last year. My mini mid-life crisis as such. Found myself a single mum to Mr 5 - Affectionately known as Boogie :) shall I explain that now or later???? Hmmm later it is!! Anyway... Boogie has a whole mess of health problems.

After a tumultuous pregnancy with no answers as to why, Boogie was born 4 weeks 6 days premature. Weighing in at 1.067kg it was the beginning of his daily struggle that is now his life and the endless questions that we still have unanswered.

Not able to sit unaided until 12 months old and not even attempting to pull himself up on furniture until 18 months, I knew something was wrong. All that was missing was the answers to our question. Why?

He suffered his first major Asthma attack the night of his first birthday party, and from then the problems just got worse, suffering pnuemonia, spending weeks on end in hospital with his underveloped lung problems, even catching the swine flu during the epidemic. Something as simple as the flu injection having to be monitored in a hospital to make sure of no complications. Several ICU admissions later and countless food diaries pointing to food allergies, our result is a bucket load of steriod medications which may or may not stunt his growth but manage to keep him alive and out of icu a majority of the time.

He started cutting teeth with it bringing countless febrile convulsions and hospital stays everytime his temperature soared.  Then 
Diagnosed with a thalassemia blood trait & iron deficient anemia it was just one more blow to his already complicated conditions. But I knew in my stomach that even with all those diagnosis something was still not quite right. At the age of 2 we were taken under the wing of his amazing pediatrician. And with that came our most complicated condition of all. Spastic Diplegia cerebral palsy & Sensory Processing Disorder issues. Finally my answer as to why he couldn't reach any milestones and the cause of his developmental delay.  It was a relief to be honest. Someone telling me it wasn't all in my head!!

With that diagnosis has brought daily physio at home, and expensive private sessions a fair distance from our home. Speech therapy, Occupational therapy, Bike riding therapy, Botox therapy (in his legs to loosen muscles so he can stand & Arm so he can attempt to use his left side), dieticians and countless moderations to our home all of which have been hard to fund, for something soo basic, and yet soo necessary. Everyday is a struggle to maintain his weight, getting him to eat with his sensory issues, spitting, gagging and overall not eating more so when he is sick.

All of this without being able to return to work, is starting to take its toll on us (Boogie and I) financially and mentally. All I want is for him to be able to have some sort of normality , even though we aren't really sure what that is anymore, and for me to be able to be at his side smothering him with kisses through it all.

So why don't you share with me your splice of life? What is normal anyway? I bet it is overrated!!!