ANDREAS NEEDS A MIRACLE

I want to share with you all in blogger land, a story of a little boy in Tassie and his gorgeous family.  His name is Andreas and he is 7 months old.  In fact, I will let him tell you ......

My name is Andreas Sheppard I am 7 months old, from Hobart & this is my story.

Mummy & Daddy were told before I was born that I had a hole in my heart (VSD) but everything seemed fine. At 9.11am on 23rd June 2011 my fight for life began. At first everything looked fine, I got to have a short breastfeed from mum then the unexpected happened. I crashed and went into critical heart failure and required intubation (life support). Mum, Dad and my siblings Maykayla 12yrs, Sinead 8yrs & Soren 2.5yrs were very emotional.

Mum and Dad were advised that my life expectancy was only a couple of hours. Friends and family came to meet me quickly and my Christening took place. After many tears and prayers I fought hard and was flown to The Royal Children’s Melbourne with Dad 12hrs after birth.

I was only given a 1 in 10 chance of surviving the flight. During that night Dad was advised 3 times goodbyes were needed. I kept fighting very hard and Mummy flew over to me on 28th June and started the bedside vigil. At 7 days old in ICU, Daddy was allowed to hold me for the first time & mum got her 2nd cuddle. They were scared with all my medicine lines & monitors. I was surrounded by monitors, tanks, syringe drives & drips stands. I made it to ward 7 West with oxygen assistance. At 3 weeks I got my first bath. Mummy expressed milk around the clock which I receive though a tube in my nose (NG). At 5 weeks old my siblings came for a visit & family members. At 5.5 weeks I finally could breathe without oxygen assistance!

At 7 weeks old I flew back to home Hobart! I fly to Melbourne every month for a check up and to monitor the progression of my heart problem. I see private Cardiologist & Paediatrician in Hobart every month. I have weekly appointments with Paediatric outpatients in Hobart. Paediatric outpatients home nursing call in and say hi.

I had a surprise admission to Melbourne in January 12 for 8 days requiring IV medications, I rejected the IV after 26hrs without a full dose of Antibiotics. They changed me to oral Antis as I am extremely hard for IV access because my veins are so little and it is best to keep an access free for emergencies.

I am gaining weight which is fabulous but comes with the problem of my heart having to work harder to sustain my life. Doctors have advised Mum & Dad there isn’t much more room left for increasing my daily medicines I depend on.

My Paediatrician advised Mummy today that everyone is still in shock I had managed to stay out of hospital until January 12. My future is short and we are expecting lots more admission to Melbourne Children’s but I will fight on and keep proving everyone wrong.

Thank you for taking the time to read my story, love Andreas xo

and this from his Mum and Dad:

Before birth we were aware our 4th child, a son, Andreas had large hole in his heart (VSD) that shunted blood flow L to R but we were told it did not require intervention, just monitoring. No one knew Andreas had Hypertrophic Cardiomyopathy which has given Andreas no life expectancy. Doctors cannot give us a time frame as they simply don't know.

Andreas has fought so hard but sadly not all heart cases are able to be repaired. Emotionally this is limbo for all involved, we know what the outcome will be but are blessed to have Andreas to enjoy and are fortunate for his quality of life.

Financially the associated costs are extensive, even with full private health cover we have now used all our savings for Andreas. We had the unexpected surprise at birth of being transferred to Melbourne for 7 weeks straight. Every month we fly to Melbourne for 2 nights for an ECG, ECHO & review. Andreas is susceptible to infection and is home bound.

The care needs for Andreas are extensive. 12 medication doses daily at 7am, 8am (2), 9am, 2pm (2), 6pm, 7pm, 8pm, 9pm, 10pm. He needs 8 daily 1hr pump feeds every 3 hours through a tube in nose (NG) which I change. The pump feeds require supervision as the tubing is a strangulation hazard, feeds are at 7.30am, 10.30am, 1.30pm, 4.30pm, 7.30pm, 10.30pm, 1.30am & 4.30am. I expressed breast milk every 2 to 3hrs daily for feeds. The care of Andreas results in 3hrs to 5hrs broken sleep every 24hrs for me.

On January 12 Andreas was admitted to Melbourne Children’s Hospital with a Viral infection, Bacteria in blood & a Urinary tract infection 8 days unplanned but is now back home and doing well.

We are so grateful to the family, friends, our chosen medical team & general public who have provided prayers, support, donations, gifts & messages for Andreas. We are so moved by everything and how Andreas touches all who come into contact with him.

Andreas is back to Melbourne to the Royal Children's Hospital again this month and the family are struggling financially to keep up.  We have started a fundraising site on MyCause and if I could ask you all to donate anything you can afford, it will go a long way.

ANDREAS NEEDS A MIRACLE 

Or pop on over to our little non profit page on Face Book called "Pay It Forwards - Tasmania :)

PAY IT FORWARD - TASMANIA 


FUNDRAISING LINK


Thanks for reading guys...I hope this story touches your heart as much as it has mine :)

Meeg xxx

ROAD TRIP!!

On the 21st December, I packed up the kids and we set off to go from Tassie to Western Australia! We boarded the Spirit Of Tasmania people ferry...and drove from Melbourne to Port Augusta South Australia in the first day!

Now I realise a lot of people thought I was CRAZY to undertake a mission of this magnitude, alone with my 3 kids in the car....would I come back...would the kids be still breathing upon our return?? Well I can tell you...we DID IT! No-one was hurt or killed in the making and the memories we have from it are insurmountable!  We didn't muck around much on the way over other than to stop at a few BIG monuments...like the Great Australian Bite....

This was breathtaking! So beautiful! My eldest son, quite the environmentalist, said it was the most amazing thing he has seen in his life (11) and told me he was so happy to have an adventurous Mumma that takes him on trips like this...I told him I had to wait 41 yrs to see it, he was very lucky to be so young to get there and made him promise me he would undertake the trip when he was married with kids so his kids can see it all too...he promised :)

                                 The Kids all got their "Ive Crossed The Nullabor" certificates haha

We were destined for Kalgoorlie South Australia to spend Christmas with my sister and her new family over there.  We got there Christmas Eve!

Kalgoorlie is the Gold City...Its a mining town and I gotta tell ya....there are some pretty great people over there! I had a ball...Was involved with the Hash House Harriers...on the men's hash night....So we had to dress up as men to crash it hahaha....was a hilarious night and they are a great bunch of people...I am DEFINATLEY joining Hash in Hobart!

So we had Christmas and New Years in Kalgoorlie...I was introduced to the Kalgoorlie Road Train...check this sucker out!

Its a 3 people shot glass....AWESOME...we are gunna make a Tassie version out of PVC pipe and have 5 shots on it hahaha....DEADLY!! (big shot!!)
From Kal we went to Esperence for a look but it was a shitty old day and rained..I also got booked for speeding $150 and 4 points (double points for the holiday period!!! F*#%k) So the next day we set off back on the Nullabor heading for South Australia....Got to see my beautiful friend Jen who I hadn't seen in a few years, went out for the worst Chinese meal EVER (accompanied by the karaoke, just as bad) had a little luxury in a spa unit then off to Melbourne we went.... Took the kids to see Luna Park, Melbourne Zoo and  Sovereign Hill....I was nearly exhausted by this stage (and so was my bank balance hahaha)

We had an amazing time...I am a single mum, so if you think you cant do it..BULLSHIT! We went 7721km, I was asked 57 times "How much further", the kids and I bonded, played eye spy, the licence plate game, ate crap food and somehow we survived and the memories are forever! JUST DO IT!  You will have a ball!

Til next time :)


Meegs

Nearly Christmas Already!!

Well your all probably wondering where I have been right???  Been 4 months since I last posted..slack on my part...but so much happening!

VANUATU BABY!!  The girls and I went on an P&O cruise of the pacific Islands....If you have never done a cruise..DO IT!!  It is the best holiday EVER! Everyone on board, mums, dads, kids, auntys, uncles, nan's pop's EVERYONE is in holiday mode and love it! 

 About to leave port....We were SO excited!!

 Happy little sailor girls

 My Fav Island

 JET BOATS BABY!

 Villa

 Parasailing - this is Nat...she was NOT impressed with the parasailing hahaha

 One of the bazillion cocktails I consumed!

Had the best ever holiday!  Didnt get seasick...just bloody loved it.....until I got home..... While I was away all hell broke lose on my Lapband page and I lost some very loved and missed members through it....I just couldnt sort it out, got angry and lost 3 friends I thought I would have for a lifetime.  Hurts like hell but I have no idea how to fix it and I wont go on about it any further :'(

Anyway, moving on.....What else has been happening?  Well I have been scooting off again to the mainland and went to see Heart, Choir Boys and Def Leppard recently in my fav city Melbourne....Was a great weekend with my cuz Karen....jager again was involved but managed to not get locked up so all good LOL

Off to see Stevie Nicks ont he 10th Dec...I have loved this woman forever..can NOT wait to see her live....Squeee!! Nearly as good as the 8 DAY CRUISE AROUND THE GREEK ISLES AND THE WEEK IN ITALY we have booked and paid for in May next year!!! OH YEAH BABY!!!!  Topped off nicely in July by seeing one of my most loved musician's Mellisa Etheridge LIVE in July....busy year ahead as you can see!!

Well the weightloss has stalled a bit...Im at about 80kg....it goes up and down a few kilo's all the time, but only have 2 mills in my band atm so not having anymore in now til after Christmas as I am taking the kiddies on a roadtrip to Western Australia for Christmas break.....I must need my head read...3 kids all the way to WA in a car together...any travelling tips GREATLY appreciated!!.....someone shoot me now LOL


Have a Great, Safe and Merry Christmas everyone...thank you for reading my blog this year...I will definately get off my NSA (now smaller arse) (Thanks Pete! xx) and update more reguarly!

Stay safe and DRINK UP! Its Christmas!!


Love Meeg xxxxxx

The Blue Funk

Its not often I get down...I mean we all have our shit days, but for 41 years I have always managed to pick my head up and get on with it...having kids makes that easier because, especially as a single parent, you just HAVE to move on...But I am down today....I lost an Uncle on Monday and the bullshit that families gather around deaths has made me reflect heavily on the loss of my wingman, Nan...She was the fighter of my battles and co-conspirator on paybacks haha....I miss her terribly today more so, as I do every year on the first day of Spring.  Nan's favourtie season, she was a very keen gardener....renewal, new beginnings, fresh starts (and Spring lambs...she loved to see them in the paddocks)....So I am finding it hard to pull myself out of this funk...you would think the upcoming cruise to Vanuatu Saturday morning would help..but its not...Everyone keeps telling me not "to worry" and just enjoy your trip....I am struggling with that too....

What do you do to de"funk" yourself?  I visited Nan's grave today as I do on the first day of Spring every year and will continue to, as I want her to have some of the Daffodils and Freesia's that she loved so much, to help ring in the new season...I will get over this (probably as soon as I get on the plane to Brisbane) but really on Struggle Street right now.

Even after the longest, darkest Winter...the promise of Spring renews.....

Statewide Meet-Up Campbell Town Tas

 As you all know, if you have been following my blog, is that I started a support group called Tassie Lapbanders.  We have over 150 members now and quite often arrange lunches and meetups, clothes swaps etc.  This year our annual meetup was at Campbell Town and what a day/night we had!

I am so privilaged to know these amazing people!  They have given me so much support and love through out my journey...I couldnt imagine my life without them now!  No-one understands a lapband like a fellow lapbander!

A few of us decided to stay the night, as we do, and didnt we run amuk!  The poor old pub didnt know what hit them when we got there...but they loved us! The staff at the Campbell Town Hotel were AWESOME!  They looked after us bunch of crazy pissed women day and night....Outstanding service!  They even let me "plank" on the bar!

There was a fair bit of planking going on:

 

I cant explain how much these women mean to me....They are a constant source of support, amusement and love and its a bond that I doubt will ever be broken and I am so blessed to know each and every one of them.

Thank you to all that made the trip to Campbell Town.....THANK YOU for your friendship, generosity and care....I would be lost without you xxxx


Til next time....

Meeg xxxx

PS: Remember to do a random act of kindness today!! :)

 I just won TAS KENO.....$6!!!!

TOUCH ME UP DARL!! bahahahahaha

SPD-What is it and how did my boy get it??

Today, my son Joseph was finally given a name to his "meltdown" problem.
He has SPD - Sensory Processing Disorder.

"People with SPD experience their world as either Hypersensitive (over reactive, sensory avoidance) or Hyposensitive (under reactive, sensory seeker). They may also present with motor skill problems. They may react with strong emotional behaviours and experience what may be described as ‘melt downs’."

Poor old Joe was labelled with having "anger" issues at his last school, I have had him to pyschologists, doctors, counsellours, anyone who would listen and finally today a wonderful paediatrician told my son that he doesnt have anger issues, he has SPD.
 
Next week we are beginning Occupational Therepy to help Joe cope in his world.  I have a heap of reading to do tonight and have just ordered the book called "Sensational Kids" by Dr Lucy Miller.


Sensory Integration (S.I.) is the term used to describe the way in which the brain sorts out and organizes for our use the many sensations which we receive. 

Dr Jean Ayres defined sensory integration as, ‘the neurological process that organizes sensations from one’s own body and from the environment and makes it possible to use the body effectively within the environment” (Ayres, p11, 1989).


Sensory Integration is the body’s ability to:

1 Receive or take in sensory stimuli
2 Interpret the stimuli
3 Process the stimuli into a response; and
4 Adaptively respond to the stimuli

The sensory system takes information from the surrounding environment through touch, smell, sound, vision, taste, movement and gravity. It processes or interprets these sensations together to make sense of the environment. The process of sensory integration lays the foundation for efficient operation of the nervous system and other parts of the body that respond to the signals sent by the nervous system. The child then responds to these sensory inputs and makes appropriate responses to perform skills required.

These difficulties put children with SPD at high risk for many emotional, social, and educational problems, including the inability to make friends or be a part of a group, poor self-concept, academic failure, and being labeled clumsy, uncooperative, belligerent, disruptive, or “out of control.” Anxiety, depression, aggression, or other behavior problems can follow. Parents may be blamed for their children’s behavior by people who are unaware of the child’s “hidden handicap.

So, to all the staff at Joes last school......NO he HASNT had his medication....Because HE ISNT ON ANY!  He has SPD! Dont you love it when our educators think they have a degree in Medicine too!!

Hopefully now Joe's life will settle into a more calm and easy routine....our marvellous doctor will even be writting to Joes new school to explain his SPD.


Me, Im just happy to know he will be ok! 

Its MUSIC HALL time!!

For the past ten years I have been a cast member of "The Bagdad Music Hall".  I was thrown in the deep end when I first moved back to Tassie by my friend Marie.  I had heard great things from my mate Steve Hildebrand (or Homebrand as we call him...better known in these parts as "Coon").  I was so nervous that I had to be pushed on stage and can I tell you I have never looked back!  We are like a family now and every year it rejuvenates my sense of humour!  It is getting more and more "tongue in cheek" every year and is so much fun.

Here's a taster....we made youtube!

http://www.youtube.com/watch?v=Iesvgu_FmDU&feature=share

Rehearsals start in March/April.....We put a hell of a lot of our own time into it...Rehearsals in Winter can be "fun" but when the curtain opens all the time and effort is worth it.  We have a ball and so do our guests!  You arrive to a gorgeous scene of candlelit tables and hot soup to start your meal....Then a full carvery meal and dessert between acts....you dont even have to leave your table for a drink...our fabulous "beer runners" bring you a fresh jug as soon as you raise it!  Half time we have a sing for your supper.....and those of you that have an URGE to get on stage...this is your chance!  It is a loved tradition in the Midlands and all proceeds from the show goes back into the community.

Young and old are involved....no previous experience required....alcohol is provided for inspiration LOL.  I am proud to be a member of the club and very proud to be a member of this community.  This year is our 30th Anniversary!  30 years this great show has been running....lets make it another 30!

If you live in Tassie and would like to come along.....book now!  The show runs from the 12th August until the 27th.   Fri and Sat only.  Call Maureen on 03 62686 170 to book!


Til next time...........

Break a leg! xxxxx