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Monday 31 st of December 2007
Wow the year has ended , I cannot believe how quickly it has gone , Sammy-Joe enjoyed Christmas and has been excited about being able to venture outside at night now once the sun is gone , its so hard on him being trapped inside all the time , he is a happy boy and pretty amazing that he copes with everything that he copes with .
Christian is hating the summer , he said he hates not being able to see any of his friends and he hates everything that he has to think about for next year , I told him he has to focus on the positive from now on and have at least one thing at the end of each day to tell me that he thinks was positive for him in the day , he is a teenager , so everything seems morbid at the moment for him .
I am trying to download all the photos from my camera this way I will have plenty to post for everyone to see , the christmas ones didnt turn out so great this year , never mind , on Christmas eve a couple of my friends turned up unexpectedly , but we were very welcoming because we were on our own so it was good to have company .My parents were also with us Christmas Eve
Christmas day I went to my mums for a couple of hours , Sammy-Joe was so good and I tried to get him to go to my inlaws but he wanted to go home , two hours away from his protected enviroment was a bit much for him . On Boxing Day we spent a lovely day with my inlaws , they came over and we had a wonderful lunch together , talked about Christmas and shared stories of the past Overall the end of the year has been very calming with no or little dramas
thank you for sharing a wonderful , exciting , dramatic year with us through this journal and thank you for always taking the time to read it and to write , pray for us and for sending us all of your love , we truelly are grateful .
I leave you with this paragraph below , I believe Sammy-Joe is energy aware ...................
The best response to a negative experience is to create a positive experience. Instead of fighting against life's misfortunes, transform them into useful and worthwhile value.
When things go wrong, you have a choice. You can wallow in self pity or you can seize the opportunity for self improvement. In every disappointment there is the seed of fulfillment. In every weakness there is the seed of strength.
Problems and difficulties provide reliable pathways to achievement. There is value to be gained from every experience when you choose to see that value and to bring it about.
You never have to be the victim of random circumstance, or of any other circumstance for that matter. For instead of choosing to be the victim, you can always choose to make a positive difference.
Life is often unfair, and comes to you in ups and downs, but that doesn't really matter. For you are free to make of it whatever you choose.
Energy is the foundation of life, so to be energy aware is to experience life at its spiritual foundation. What a wonderful gift!!! Yet, energy awareness also has its challenges. When your awareness opens, it can feel like so much stimuli, that it is easy to get lost in it, to feel overwhelmed, exhausted, unable to focus or function. Everyday activities such as having a conversation, being in crowded places, or driving can be difficult or dangerous. Energy awareness is great, but it requires development of new skills, and an open mind. I will address both of these here, starting with new skills. This is, of course, only a partial list, and is based on my own experiences.
Happy New Year 2008 will be a better year for all of us
love you all
Maria xxxxxxxxxxxxxxxxx
Wednesday, December 26, 2007 7:01 AM CST
i hope everyone had a Wonderful Christmas , please read this beautiful email I got today from my friend Simone
I love it
love this........
>
> Once upon a time there was an Island where all the Feelings lived;
> Happiness, Sadness, Knowledge, and all the others, including Love.
> One day it was announced to all of the Feelings that the Island was
> sinking and that there were boats to leave.
>
> Love was the only one that stayed. She wanted to preserve the Island
> paradise until the last possible moment.
> When the Island was almost totally under, Love decided it was time to
> leave.
> She began looking for someone to ask for help. Just then Richness was
> passing by in a grand boat. Love asked, "Richness, Can I come with you
> on your boat?" Richness answered, " I'm sorry, but there is a lot of
> silver and gold on my boat and there would be no room for you anywhere."
>
>
> Then Love decided to ask Vanity for help who was passing in a beautiful
> vessel. Love cried out, "Vanity, help me please." "I can't help you",
> Vanity said, "You are all wet and will damage my beautiful boat."
> Next, Love saw Sadness passing by. Love said, "Sadness, please let me go
> with you." Sadness answered, "Love, I'm sorry, but, I just need to be
> alone now."
>
> Then, Love saw Happiness. Love cried out, " Happiness, please take me
> with you." But Happiness was so overjoyed that he didn't hear Love
> calling to him.
>
> Love began to cry. Then, she heard a voice say, "Come Love, I will take
> you with me." It was an elder. Love felt so blessed and overjoyed that
> she forgot to ask the elder his name. When they arrived on land the
> elder went on his way. Love realized how much she owed the elder.
>
> Love then found Knowledge and asked, "Who was it that helped me?" "It
> was Time", Knowledge answered. "But why did Time help me when no one
> else would?", Love asked. Knowledge smiled and with deep wisdom and
> sincerity, answered, "Because only Time is capable of understanding how
> great Love is."
>
> The Facts of Life:
>
> 1. At least 5 people in this world, love you so much they would die for
> you.
> 2. At least 15 people in this world love you, in some way.
> 3. The only reason anyone would ever hate you, is because they want to
> be just like you.
> 4. A smile from you, can bring happiness to anyone, even if they don't
> like you.
> 5. Every night, SOMEONE thinks about you before they go to sleep.
> 6. You mean the world to someone.
> 7. Without you, someone may not be living.
> 8. You are special and unique, in your own way.
> 9. Someone that you don't know even exists, loves you.
> 10. When you make the biggest mistake ever, something good comes from
> it. 11. When you think the world has turned it's back on you, take a
> look, you most likely turned your back on the world.
> 12. When you think you have no chance at getting what you want, you
> probably won't get it, but if you believe in yourself, you probably
> sooner or later will get it.
> 13. Always remember complements you received, forget about the rude
> remarks.
> 14. Always tell someone how you feel about them, you will feel much
> better when they know.
> 15. If you have a great friend, take the time to let them know that they
> are great.
Take control this Christmas
Merry Christmas everyone , I wanted to just remind everyone how important it is to stay positive this Christmas and to remember the true meaning of Christmas , please remember to help the less fortunate and to help people that a spending their Christmas alone , make sure that you do what Jesus would have wanted you to do , please also pray that God is remembered and that all families spend their time rejoicing and being grateful for the love they share .
Remember where there is negative there is always positive ,where there is a dark cloud there is always the sun shining right behind it and the warmth of Gods love showing you a way out of whatever seems too bad , think with pure love and positive energy at all times and things can change , even miracles can happen for a brief moment .
love
Maria xxxxxxxxxx
Friday, December 21,
2008 Contract
After serious & cautious consideration.....your contract of friendship has been renewed for the New Year 2008!
It was a very hard decision to make. So try not to screw it up!!!
My Wish for You in 2008
May peace break into your house and may thieves come to steal your debts. May the pockets of your jeans become a magnet of $100 bills. May love stick to your face like Vaseline and may laughter assault your lips! May your clothes smell of success like smoking tires and may happiness slap you across the face and may your tears be that of joy. May the problems you had forget your home address! In simple words ............
May 2008 be the best year of your life!!!
Today has been a pretty hectic day for us , Sammy-Joe has been well behaved the last couple of days and I am guessing that finally the UTI has gone , he is still on antibiotics and has been off the herbal meds for a month now , I will reintroduce the herbal meds as soon as I think he is well enough to tolerate them , he kept throwing them up in the end .
He is also on two peg feeds a day now as he hasnt been getting enough nutrients daily as his oral intake has worsened , he isnt really motivated by food as much these days , I too havent been too motivated lately , have been going through a LUL so to speak , I have been trying to spend more time with the boys and just worry about their happiness before mine , which I guess its something that I have always really done .
I want to say thank you to everyone that has offered us support this year , we have had many difficult times , but without your help and constant guidance I dont think we couldve gotten through the year , so please know that I am grateful to you all for your friendship , kindness and Good will , we appreciate every ounce of love that comes our way .
I would like to say Merry Christmas to you all and please know I am going to try and write more in the journal from now on .
have a wonderful Xmas and I will post some photos soon
love and hugs
Maria
Saturday 15th of December 2007
Wow the year is nearly over , I cant believe how quickly Christmas has come around , I havent bought any presents yet , and I havent even started to think about what I am goin to buy as yet because money is so limited , its been a crazy year with so many things happening , so many different degrees of stress. but I guess in the end we get through things dont we ? usually with the good help of people that have kind hearts , thank you again to all my earth angels out there .
I am reading book on how to rid yourself of negative emotions , I have found it so interesting the last couple of chapters how much truth is in this book , we do as people all of us carry so many emotions and most of them seem to be negative ones , its very true also that we need to rid of these to start seeing the true positive side to our lives , I think that is what has kept me strong through out so many of our ordeals , the positive side to everything that has happened , because I think if you flip the coin and see the otherside , well then there is a lot for us to be grateful for , Life is one , because at least we are all still here , and in all of the past years events , it could ve gone a different and more tragic way .
thanks again to all of you that constantly step in and help in anyway you can , we do really feel very blessed to have you all
God bless you all
I will post some photos soon
love and hugs
Maria
Thursday, December 13, 2007
Thank you to everyone for all the prayers , Sammy-Joe has had a couple of days without a carer and we also have been without a car , Joe has taken mine so he can get to work , I would like to thank everyone from Kayser Hoisary in the Warehouse for the beautiful food hampers they bought to us last week on Friday , my eyes swelled with tears and my heart was so touched by this beautiful gesture of kindness , you are all incredible and awesome friends ,, thank you ,, thank you , its amazing and incredible to know that we have such beautiful people praying for us and caring so much about us , thank you so much you truelly have helped in our time of need , I got Joe to take some photos and I will post them here soon to say THANKYOU , the food was so yummy , I also want to thank Tony and Anne for everything you have been trying to achieve for our wishes to come true for Sammy-Joe , I will keep praying hard that things work out in the way they are intended to , please keep the good prayers up , its amazing what the power of prayer can do .
We love you all very much , I havent done any Christmas shopping or sent out any cards yer , please know I do wish everyone a very merry Christmas and will try and get those cards out as soon as possible .
love you all
Maria
Monday, December 10, 2007 6:17 PM CST
Sammy-Joe isnt well today , he has another UTI , which now will be investigated further because too many have occurred in the last few months , this poor kid , he doesnt seem to get a break and neither do we , I wish and pray that things get better for all of us soon , its been very very difficult for us , I think at times life is pretty unfair to us , I have to keep my faith up that things will change soon .
Joe is still very upset about things.
still pretty traumitised with what happened to him , we are still basically in disbelief , but very very grateful that he is alive , I am going to list five things a day to be grateful for every one needs to I think because there are so many things people take for granted and they dont even realise .
love and hugs
Maria
Friday the 7TH OF DECEMBER 2007
Thank you to everyone that has been praying , what a miracle this week , we are counting our lucky stars that the only thing that we lost was the vehical and not Joe , the inconvienance is basically what we are dealing with , Joe is dealing with trauma , whipplash , bruising and sholder and neck pain , but basically a Miracle , we are very very grateful that this week turned out positive , rather than what couldve happened , not many people survive accidents with Trucks involved . thank you God and thank you to all of you that Pray for us , check on us , leave us messages and send all of you love , we appreciate everything . thank you
Maria
Monday, December 3, 2007 7:35 AM CST
My Hubby Joe had a car accident today at 3.20 pm ,it rained it was bucketing down here and the traffic infront of him slowed down and so did he , but the driver of the Truck behind him had other plans he kept going , put on the brakes too slowly and slammed his big Mac Truck into the back of Joes Toyota Camary , Joe was in shock when I arrived at the scene and called the ambulance , fire brigade came , police and toe truck, the car was ridden off , but Joe miraclously survived with minor injuries , tonight we are grateful for all the people that came to help and for all the wonderful people that assisted him and me , to all the people that were understanding and caring , thank you to all of you and also thanks to God and the angels for keeping Joe safe ,, pretty much a Christmas Miracle .
Sammy-Joe and all of us wouldve been pretty shocked, we would be in a very bad way if we lost our gorgeous Joe , please keep up the prayers , Sammy-Joe and Christian love Joe , he is a beautiful dad , devoted husband and caring soul
please pray for us
please stay safe
Thank you to everyone that prays for us
Maria
Monday, November 26
LIFE ,, LIFE ,, LIFE ,, LIFE ,, LIFE ,, LIFE ,, LIFE
very very full on and hard ,, I NEED A BREAK ,, I think I need a holiday or something , life in the last few days has been very very full on ,, please storm heaven with prayers for me , I feel myself getting tired again .
Maria
Sunday, November 25, 2007
Happy Birthday to my dad today ,, thank you God for letting him be here with us , I am not sure if you all remember my dad had a stroke this year in April , so I thank God every day that he has kept him here with us , we are very very very Grateful .
thank you
Sammy-Joe loves all his Grandparents and he would be devastated if he couldnt see them again , he loves and adores his grandparents very very much
Maria
Thursday, November 22, 2007 3:25 PM CST
Gratitude and PRAYER POWER
I support.
I'm a big believer in prayer, and I pray.
But today I'm reminding myself that my
glass is half full. Yes, I know there
is lots of pain and struggle in the world.
But in my little corner, all is well, and
I believe my job is to notice that, and
appreciate it.
Aside from the fact that my parents taught
me to say "thank you," gratitude is a
powerful spiritual principle. We get
more of what we pay attention to, and
the more grateful we are, the better
life is. So, if you catch me whining,
remind me of that, will you?
My personal harvest of blessings includes
my family: my wonderful husband and
children brothers
and sisters, our amazing community of
friends, and our beautiful little home full of love and positive healing energy where we
all gather. I am so incredibly fortunate
to be surrounded by so much love.
I'm also very grateful for my energy and
health, and for the well-being of my family.
This year I'm particularly thankful for
the recovery from serious illness of three
of my family members
I am grateful for my support group work which is fun and
exciting and fulfilling, and gives me so much
freedom to speak my mind , I am also grateful to Caringbridge , what an incredible way to connect with so many wonderful friends and people of all over the world
Be Grateful because the world is incredible and beautiful , I know I AM .
Maria
17th of November its my birthday today ,,,
Well apart from being pretty tired and feeling pretty old now ,, I guess birthdays can be fun , Sammy-Joe has been pretty amazing today ,,he remembered its my birthday and sang me Happy Birthday at 3 am ,, I wanted to sleep , but he was too excited and kept asking me for a present to give to him ,, he is so funny ,, he has been sick for two weeks with a horrible UTI and today has been the first day that he has smiled and laughed , although its been at 3 am , at least he is smiling and not miserable again , he seems to be enjoying my birthday more than I am ,, I think when you get to my age you try and forget them rather than remind your self that your one year older , cos if you dont remember I am sure your body reminds you ,,lol,, anyway apart from that , Sammy-Joe is back on antibiotics and also he has lost more weight , all up 10 kilos , I am glad he had stacked on the weight now , at least he had weight to lose ,, usually he has none and then he disappears in summer , but the last few years he has been able to cope with some of the weight loss , its just sad that he gets like this in summer , he loses his hair also and it just falls out in chunks , very sad to see .
I found some Garfield slippers for him on ebay and they arrived yesterday ,, he was so excited , he kept saying his old ones were yuckky , SO WE threw them out , he loves his new ones at least his toes dont poke through , he absolutely loves Garfield , now I just have to find him some pyjamas and Tshirts with Garfield on them .
I have been broke again , this time of the year is bad for everyone ,,
Christian has been ok , he is enjoying playing for the PACERS ,, HE has already made new friends and enjoys everything about the Club .
Anyway I will try and upload some photos soon ,
have a wonderful weekend
Maria
Thursday, November 8, 2007
Thank you to Superior Health Care from Dandenong South Vic for all the products you sent to Sammy-Joe , he enjoyed them and can manage them due to the thickness of the substance of the drink
http://www.superiorhealthcare.com.au Thank you to Kevin Ryan
General Manager
Superior Health Care Australia Pty Ltd
61 - 67 Ventura Place
DANDENONG SOUTH VIC 3175
Wednesday the 7th of November ,, ten days to go for my birthday ,,lol
Christians Birthday went well , he won the Melbourne Cup and he also had a great time , Sammy-Joe was a social butterfly , which is usually something he isnt at parties , normally he shys away from small crowds , but he was totally different this time , he wanted to be a big part of it all , I have some photos to show you all , hope you enjoy them ,, thanks so much for all your well wishes and happy birthday messages , Christian is very happy that you all remembered .
Christians Birthday
Birthday today and its Melbourne Cup ,, Christian is 15 today dont forget to visit our my space and also leave some Birthday wishes for Christian , he is 15 today , and I will take lots of photos and load them in tonight , he also went to the Tigers Game and they announced his Birthday on the night ,, thank you so much Tigers , plus they won the game ,, how fantastic !!!!
here are some photos from the wedding that Joe and Christian attended recently , Vince and Jeraldines wedding held at the MCG
take a look at the great photos , I couldnt get a carer so Sammy-Joe and I stayed home that night 
uncle Tony and Christian 
Jerome and Christian 
Aunty Rita , Frank and Christian ,, they had fun xxxxxxxxx
Angel love and energy
"Family love heals all wounds........"
Female
41 years old
Melbourne, Victoria
Australia
Last Login: 3/11/2007
Mood: grateful
View My: Pics | Videos
Contacting Angel love and energy
everyone check out my space
MySpace URL:
http://www.myspace.com/samjochris
Thank you to everyone that has been supporting us in this time of need , thank you to all the people that pray endlessly and think about us all the time ,we love you all very much
October 25th 2007
We believe and suspect that Sammy-Joe may have had a mini stroke , as his eating and swallowing has regressed , he now struggles again with certain foods, last week I have had the speech pathologist assess him and also have had the dietician come out this morning ,
both have come in to try and arrange what needs to be done , I know that Sammy-Joe would much rather eat things orally , rather than have things through the peg , just imagine how frustrated it makes him , and I am guessing that this also contributes to his behaviour .
Life at home and in our community has been quite stressful lately , and all of us has had to cope with many issues , but I am most grateful to those who have been here ,,by ourside and on the phone , at the door , because when sometimes things seem like there is no Hope , there is always someone around the corner that lends a hand , and you find friends in the places that you didnt have friends , so its important to know that the way we treat people is what brings the positives back to us three fold , whenever you lend a hand ,, well then ten sets of hands come back to you when you need it ,, so please people , try and be positive , treat each other nicely and respect each others opinions , it doesnt take much to be nice and stay calm amongst the storm .
Thank you to everyone that has been understanding towards our family this week and to everyone that has shown ,support , in everyway they can , I am extremely grateful to you all , I feel very very blessed having you in our life .
october 24th 2007
Thank you Ciaran Mc Peake from the Melbourne Tigers for Cheering us up after this stressful week we have had , thank you for all your support .
its exciting for Christian , it was so lovely to speak to Ciaran today , thank you for helping us to feel better in this very stressful time of our lives .
THANK YOU !!XXXXXXXX
www.tigers.com.au.
Sunday, October 21, 2007
We have had a very stressful week of decision making , thank you to all of those in the community and friends that have helped us to deal with this weeks events .
My family has been through the wringer this week,
and its comforting to know that we have friends out there ,that truelly care , to those of you that do not understand , I hope that one day things will be made clearer to you , but for now I please ask that you leave my family to work out the events and issues that have taken place , I also ask that you find the energy to think, if it was your child , what would you have done about it and how would you have handled it , please think about the fact that I am very respectful to those who approach me and please understand that I do have the same principals when applying respectful and effective communication , I would expect the same happens towards me ,, unfortunately this isnt the case at times ,
If we do not voice what our grievences are, people out there that are willing to help or have the drive to want to help wont know , they cannot know without being told , but the way we express our grievences is another thing , I appologise to those who feel that I may have upset their enviroment by expressing what I feel is right for Christian and for Sammy-Joe , but I need to do what is right for the health and safety and intergrity of my childrens well being .
Maria 
Thank you to Steve , Tom and Joe for supporting and sponsoring Christians basketball team and also for supporting "The Friends of Sammy-Joe "" last season , the boys including Christian were happy to receive ,warm up tops , Jackets and Track training pants ,with the sponsorship money . Also $100 from each sponsor went to support the charity .
The Team looked great in their gear , Christian was happy to see all his teammates happy , and also the fact that The Friends of Sammy-Joe Foundation was also supported what a bonus, thank you for your kind generosity .
Time to raise awareness again
please pass on our Journal and webpages to all your friends and please raise awareness on this illness , this morning I was emailed by another parent with a newly diagnosed child and it doesnt look good , the outcome for the child at this stage is critical , please pray for baby Louise and please pray that she will now get the help she deserves , please sign our guest book and let us know that you are helping to raise awareness for TTD
Friday, October 12, 2007 1:15 AM CDT
Sammy-Joe had a good day today he saw the natropath and the physio today 
, he hasnt slept , but he has been so good all day ,, I believe he will benefit from the natropath and from the physio , he also will be seen by a speech pathologist .
I will add some photos of the events this evening as I have a new camera so hopefully all the photos will be clearer
here are some photos of us at Christians Presentation Night for Craigieburn Eagles 
we had fun with the other parents on the night ,, the night was great 
Yesterday we met Don again , I met Don on the friday , he works for Paraquad and we had the honour of introducing him to Sammy-Joe, Sammy-Joe enjoyed his company and was well behaved through out the whole visit , Don will be writing a story on SAMMY-JOE as soon as he is done I will ask to link it to our webpage , Paraquad is a wonderful organisation that provides the carers for us ,,
here is the link to Paraquad
http://www.paraquad.asn.au
...Supporting Independence
and he also is a Car Nut
http://www.ezcarnut.com
I will add some more photos tonight 
Wednesday, October 10, 2007
Sammy-Joe isnt well again , his behaviour is telling me there is something else going on , he has regressed and has been doing things just like before he had the stroke , I am abit concerned , he has a blister on his lip and one on his neck , he has wanted to go outside in the mornings again but then is affected the whole day , he threw up this morning and also had a sore stomach from it ,, its so unfair , I am wishing pretty bad that something gets built outside for him to protect him from the light , but he still needs to run and excercise because our house is small there is no room for him to do this ,, he needs to run just like any other hormonal teenager , its getting difficult again because summer has set in
Maria
Monday, October 8, 2007
More photos 
me and Seppe
On Friday night I met a nice Man from Paraquad the agency that supplies me with carers for Sammy-Joe his name is Don
Sammy-Joe has been bored again , now that the summer is setting in its bepressing for him , he cant run outside , he cant be comfortable and we hope and pray that something good happens for him ,, hopefully a dream that we have been working on will come true soon ,, real soon ,, please pray that our Miracle happens ,, comeon backyard blitz or renovations rescue please help us make a dream come true for Sammy-Joe ,, oh well we can only dream and hope ,, its pretty sad thou that this poor kid cant even enjoy the outdoors without becoming chronically ill
any way here are some more photos to share with you all
Sunday, October 7,
Just some more photos to share
Christians BB presentation evening 
Sammy-Joe relaxes
Joe and Andrew
Sam ,Me and Mel
Victor and Joe
Sammy-Joe and John 
Christian with my neice Mel and my parents 
Me and my dad
Joe and Christian
SammyJoe and my dad
Sal , Sarah and me 
Sammy-Joe is feeling a little better later and he has been behaving a little unsettled , but I THINK he will settle soon enough , its been a craxy month , but here are some photos to share with you all
thank you for all your continued prayers and for all your wonderful messages , please remember to sign the guestbook so we know you have visited us 
SAM ,TOM , ME AND SIM 
We have a My space check it out
http://www.myspace.com/samjochris
Friday, September 28, 2007
Here are some photos of the last three weeks , Sammy- Joe is finding being sick difficult and frustrating , he is getting annoyed with his cough and seems a little angry at having the pain in his chest , he is also feeling sad at the moment .
Sammy-Joe loves animals , he connects with them so easily and just loves to hold them
Thursday, September 27, 2007 7:57 AM CDT
Sesame Street - Bert and Ernie - Bananaphone
Add to My Profile | More Videos
Sammy-Joe loves this video of Bert and Ernie
Thursday, September 27, 2007
Sammy-Joe is sick again, I had the local doctor come out this evening , Sammy-Joe has to be watched now as he has the beginning of a serious chest infection and possible beginning of pneumonia ,so he is on a strong antibiotic again , Rulide , he has had a couple of hard days and isnt himself at all , please pray for him .
Thank you to everyone that has continued to follow Sammy-Joes journey through life, we are grateful and appreciate all that you do for us , we feel pretty much alone at times , but truelly know that there are many of you praying for us , we are grateful to you all
Maria
Tuesday, September 25, 2007 10:28 PM CDT
Alot has happened lately in our lives , but I havent really had much chance to write an update , Sammy-Joe is finding his condition is frustrating now as the summer is setting in , he wants to have fun without feeling unwell all the time , he has been a little bored and annoyed at the lack of adventure , I am trying to get some time to get back on this computer , i WILL TRY AND UPDATE TONIGHT as I am not feeling too well still , also my mother inlaw is still in hospital and probably wont be coming out until Friday .
Maria
Tuesday 18th of September 2007
please pray for my mother inlaw Pina , she has been rushed to hospital with a very bad lung infection , Sammy-Joe isnt well again and needs more prayers also , he hasnt been right for at least two weeks now.
Maria
Thursday, September 6, 2007
Sammy-Joe is still unwell and doing alot of day time sleeping , trying to fight the flu is hard work , but he is out of hospital and he has started to eat again so that is the main thing , thank you to everyone that has prayed , please keep up the prayers as I am sure God hears them
thank you Maria
Monday, September 3, 2007
Sammy-Joe has been sick all day yesterday and today , had the doctor come out , he is very sick , he has the flu , i am not surprised as Joe and Christian have had the flu all week , Christian had week off school , is in bed still unwell .
please pray for us
Saturday, August 25, 2007
THEY WON THE GRAND FINAL AND CHRISTIAN WON MOST VALUED PLAYER ,,YIPPEE HERE IS THE PHOTO OF THE TEAM CONGRATULATIONS BOYS AND SAMMY-JOE WAS VERY HAPPY TOO WHEN I TOLD HIM ABOUT HIS BROTHER 
Friday, August 24, 2007
Today at the hospital I met a lovely Lady in the Car park that remembered us from an article that she had read on Sammy-Joe , she told us that reading about us inspired her to do things for her little Girl Kyia and she has set up a webpage , fundraised and helped change the quality of her daughters life by doing so , please if you are reading this please email me and let me know the webpage because I have searched and searched and am unable to find it I think you said it ended with it.net but I cannot find it ,, I would love to keep intouch with you .
Sammy-Joe was seen by a lovely doctor today in the sleep Clinic , SAMMY-JOE was so well behaved today I am very impressed with his behaviour lately he is amazing .
Maria
Wednesday, August 22, 2007 7:58 PM CDT
Sammy-Joe had his vitamin d shot yesterday and is doing well , the doctor was very impressed with him , the birth records I need to find are for the doctors in the USA that have been researching this illness for many years now and they are very interested in finding out more on Sammy-Joe , they have helped us in many ways to understand Sammy-Joe s illness , and although Sammy-Joe may have this illness the illness doesnt have HIM , he is beating the odds all the time and is proving that you can survive longer than what txt books say as long as you live by the rules of the illness and in his case he cannot be exposed to light .
The last few days thou he has been a little adventourous and has wanted to go outside , he ventured to the shop with me today and lasted about 30 minutes before he complained of too much light , today its taken a toll on him and he is now sound asleep .
Maria
Monday, August 20, 2007
I feel much better and amazing enough things seem better , Today I will be taking Sammy=Joe off to the hospital , I will try and take some photos today as I havent posted any photos for a long time .Apart from all of that Sammy-Joe seems well , hopefully it will keep up this way .
I havent had much luck in be able to find birth rcords and files through the hospitals for the Doctors in America , Sammy-Joe was born a very long time now , 18 years ago and the hospials changed buildings so I am not sure if I can dig those records out through the Freedom of Information act .
Well , we will see what happens
MARIA
Friday, August 17, 2007 5:59 PM CDT
Life is full of surprises , oneday I will understand the purpose of it all ,Sammy-Joe teaches me that all the time ,, today I celebrate all the good in the last few years and foreget about the bad , today is the day I forgive forget and move forward ,, thank you to everyone that has been a constant support to us we really appreciate your friendship , kindness and courage .
Maria
Friday, August 17, 2007 1:07 AM CDT
Sammy-Joe has been asleep for most of the day today and he isnt doing his best at the moment , it could be because he has lost his carer Christie today , he may seem that he doesnt understand but he does .
I have also been told off a lot of late , it seems that my optimistic personality is bothering some people and the fact that I am over caring is sometimes a problem to them all , seems that everything I say or do is the wrong thing lately , even thou my intention is always to be loving and caring ,somehow things just get misinterpretted .
I am grateful to all my friends that have continued to stick by us through thick and through thin and although you know I cannot pay you back with gifts and presents because of my financial situation , I am giving in many other ways , my house is open to all my friends and I am constantly trying to help in many ways with advice or with what ever I can offer , which at times is not much because of my difficult circumstances.My carer time has also been cut now and I only have limited time to do things whenever I have a carer , so most of the times I am busy now with Sammy-Joe .
Well , as we start a new phase in our lives I am both excited and nervous to meet new carers , but I guess we will have to see what the good Lord has to offer us , I am praying everyday that Sammy-Joe continues to improve and and praying for all the other children in the world that have this illness , life is tough , but I have to move forward and cop everything on the chin ,that doesnt mean I am not allowed to cry or feel hurt when hurtful things are said to me , it is my right as a mother of a child with a chronic illness to feel things deeply and cope with the pain no matter how its delivered .
Maria
Friday the 10th August 2007
Hi there and thank you for all your messages , have you ever had one of those weeks where everything kept going wrong for you , well I have had a couple of those lately and its driving me insane, My beautiful Carer Christie is leaving us to venture out in a new job , she deserves to expand her horizons and I feel so blessed to have met her and have had her in my life , she is the most amazing person in the world and we love her , Sammy-Joe is going to miss her dearly ,, we love you Christie xxx.
Sammy=Joe has had a few rough weeks with infections and not feeling himself , he still isnt too good , but we are keeping a close eye on him to see whats happening , he has grown 5 cms and also has put on 10 kilos now and is a little "chunky wubby ""as we call him , the doctor isnt too worried as he is 18 now and she is quite impressed as how well he is doij\ng since his Stroke of regression last June ,, all in all its quite positive exspecially for this condition TTD , it is a serious illness and shouldnt be taken lightly .
The children of this condition have alot to deal with and it seems that somehow they end up with more and more ailiments as they get older , so to see him improving is a miracle . I believe that God has his reasons for Sammy-Joe .
I am so happy and blessed to have met all the people that I have because of Sammy-Joe .
Thank you to you all
Maria
Wednesday, August 1, 2007 10.15
We had an unusual day today , Sammy-Joe wanted to go to the Library and then to Safeway , and then we even went to feed the ducks at the nearby lake ,all this in the morning , its like he was trying to get it all done before mid morning , once he had done all of this he said he had ''too much Light'' and wanted to stay indoors and rearrange his room , although he was adventureous today , he was also a little agitated and frustrated at the same time , he said he wanted to ""be Well ""and do the things that his brother does , so I am not sure whether he is noticing the difference now about himself , he also said he wants to"" grow and grow like a tree ""please say some prayers for Sammy-Joe , some of his behaviours of the past a resurfacing and its frightening me , because these are some of the things he did before his stroke , its a concern for me that he is trying to do it all so to speak , cos its like it was before the setback that he had , in a way its like he knew what is to come , he keeps talking about going back in hospital and that he is sick in his tummy ,, not sure at all whats going on with him at the moment .
Friday, July 27, 2007
I am convinced that the world has Earth Angels , people that disguise themselves as people , but really are Earth Angels , I have met so many through having Sammy-Joe , so I have a lot to be grateful for , I KNOW for sure that Sammy-Joe must be an Earth Angel because he attracts all sorts of positive people to help him , thank you to everyone , every single person that prays for us , all the people that outstretch their hands offering help to us and all of those that read my updates , which I know havent been too many lately ,, and for this I appologise for the lack of updates , Sammy-Joe now has a new bed , a King single bed ike his brother Christians and a new wheelchair , one with a tilt in it , he was very excited to receive this and wanted to take it home straight away . It was a bit of a comedy trying to get it into my car as I had to pull it apart , I have a very small car , but this is all we can afford right now , maybe oneday we will be able to afford a bigger one , but for now we will continue to pull the wheel chair apart so that it can fit in the back ,, Sammy-joe by the way finds this hilirious and thinks its a scream when I try every angle to get it in ,, he also finds it funny watching me struggle to lift it ,, ha ha he says ,, very funny ,, Anyway , he has been having fun meeting new carers , we have some new ones trying out and I hope that Sammy-joe behaves nicely for them because I really would like to have some more permanent ones that I can rely on .
Christian has played some games on Friday night without me being able to watch him as we havent had a carer , so this is where it gets tough for us , life is full of ups and downs for us , mostly downs , but when we have the ups , we are so very grateful and celebrate , people probably think we are nuts , but I am sure if they had to live in our shoes , they wouldnt last a second . Joe has been off work for the last three weeks cos his toe got infected , so I have been playing Florence Nightinggale a little longer .
I am pretty sure I could be a nurse , I should look into getting a degree ,, I know by now I am pretty confident and know what I am doing , especially after 18 years of looking after Sammy-Joe .
Sammy-Joe is asleep right now , he woke me at 4 am this morning , so I thought I would update while he has his mid morning nap ,, he is a cutie , he went to the local shop yesterday with his carer and bought a toy girraffe which he has now stuffed into a suitcase , all squashed in there , he said he wants to take it to America , he keeps speaking about it lately ,mahybe because he has been pretty sick with the flu ,, also he has a bad cough right now , but I am sure so has the rest of Victoria with all this cold weather we have been having .
I am trying to be positive about a few things that could be in the asking for Sammy-Joe , please pray that all good things come our way as we are in need of some good luck .
thank you so much for listening , I hope this journal entry finds you all well , and please know I am grateful and happy that I have people who care for us all around the world , I will try and update sooner , also to those who have sent me Msgs on my mobile , thank you so much , I havent had any credit to respond , but please know I did receive your messages and thank you
Maria
Tuesday, July 17, 2007
Thank you Ms Pam from preschool pals for the video you sent Sammy-Joe , it arrived today and he loves it !!
Thank you also to everyone that checks this journal everyday and I do apologise for lack of updates .
I have had a pretty busy start to school term and trying to get into routine again has been extremely hard ,also I have been playing Florence NightingGale.my family,and sammyjoe has nt been well , Joe is recoverying from his operation and my dad has needed me to drive him to and from hospital appointments , one of my carers has been sick so we have been busy juggling the roster again .
And imbetween all of this I have been busy battling people that blame the system when in actual fact its the people behind the system that make the system , so I have been dealing with quite a bit of pressure in the last few weeks , and still trying to come up positive and happy throughout all of this .I dont really have my mums help as much anymore as she also has to deal with caring for my dad , so Sammy-Joe is also missing Nonna , the last three months have been hard on him emotionally as well as trying to adjust to me not being here at times , hence the visits for my dad to and thro to the hospital , so I believe he has done xtremely well regardless what some proffesionals may think . hope Idont sound too negative , I really am trying to also work out what is happening around me with so called friends that have offered to help intially and then retracted their actions and backed away ,telling me that some how its all too hard for them to be around me because their lives themselves are full of stress , I understand that people have stress , but certain stresses in life can be changed and there is always a way out of these everyday stresses , but there is no way out when you have an illness , especialy a chronic or critical illness , every morning the situation is there no matter how positive you make your life and no matter how much you swap and change things certain , illnesses cannot be changed , so please do not tell me that YOU WILL be there for me and then run a mile when the going gets tough .There will always be people around when times are good , ready to pat you on the back, Its the people who can look you in the eye to deliver the bad news -and those who are still around to offer support when things arent going so well , who I value the most , the ones that stick by me through thick and through thin ,thats who I value the most .
Maria
Saturday the 7th of July 2007
Sorry for the lack of updates , this keyboard at times gives me grief , it doesnt always type every letter that I press and its annoying , so please excuse any spelling errors or misprints .
Sammy-Joe has been a real trooper the last few days , he hasnt really wanted to go anywhere or even go on his usual outing to the Library or video store , he has been receiving some videos from people that read this journal and its made him extremely happy , I am happy to accept any old videos that you may have , preschool videos or wiggles , or any kids movies , thank you to everyone that has sent things in to him , he truelly loves it , because at times ,,well most of the time he is indoors , especially in summer , in winter also he has been indoors alot this year , I' ve noticed he is too frightened to venture outdoors because the sun still hurts him , although the UV is measuring low these days , he is still frightened of getting sick .
He has been going so well with his eating and speaking and also with concentrateing on tasks , he has been a big chatter box lately ,, and speaking of boxes , he has obssesions lately over empty boxes and bags ,he stores his toys in them and takes them all around the house on adventures , he also carrys around lots of bags, he kind of his driving us nutty with all his bags and boxes , ut at least its keeping him occupied .
Hi behaviour of late has been great and I am only guessing thats its because he has been feeling alittle better now , eing indoors alot helps him , he knows his own body and knows his limitations .
Christian hasnt done anything on the holidays , just lazying around and having friends over ., playing basketball and watching dvds , playin on the computer , he said he doesnt care because for him its a proper rest from his usual activities , I think meaning school and basketball .
Joe is due to have surgery on his foot on Tuesday and me ,, well I am just me , mum , housekeeper , carer ,partner , daughter , friend , shopper for food , groceries , planner of many things , but master of none right now ,, we were not successful with our application to the Paul Newman fund and that was a little disappointing , but we will try again next year so that we can help all the kids with this illness , I am still running the support group and still trying to raise funds , still trying to advocate for TTD kids and their parents and still doing everything I can to raise awareness , I have had a little bit of a lull lately , but I think its just me recharging my batteries for another year .
Well I hope this journal entry finds youall well and I hope I hear from you all soon , please leave a message in the guest book for us to let us know you have been here , also let me know if the song on the page is working and also let me know if the background s black , it doenst seem to working on my end .
love and hugs to you all Maria
Wednesday 3rd of July 2007
I just spent the whole day at the hospital with my dad , he had to have some more tests done , we should find out the results next week , apart from being tired and hungry right now ,he is doing ok , Sammy-Joe missed me but was well looked after by the carers , he is doing ok right now , ut still has a sore bottom and a sight cold , he is such a trooper and a happy lad considering all that he goes through.
I was saying to my mum today that for the last 18 years I have spent more time in hospitals than I can ever remember , Sammy-Joe has a couple of appointments this week also , so not much fun for the holidays , poor Christian I have to try and do something next week with him .
Hope everyone is doing well and thank you again for everyone that checks in on us, Joe is doing ok , he is improving alot , he has to have surgery on his foot next week he has an in grown toe nail.
I am tired as usual and need to get some more sleep , so I will try and get an hour sleep now
Maria
Monday, July 2, 2007
What a rotten day its been for poor Sammy-Joe , he hasnt been well at all , he now has to deal with haemarroides as well , he has been severely constipated and now is dealing with pain in his bottom as well, I know it isnt a great subject ,but its the truth , when is this boy going to get a break from being so unwell ?
I will keep everyone updated because if the problem doesnt get any better he will have to have surgery ,hopefully it wont get to that , but the doctors that saw him have said we have to try and introduce more fibre , which really Sammy-Joe hasnt got a problem with ,normally anyway , well I believe it could be something else , but we will have to keep an eye on it and see what comes of it ,please continue to pray for Sammy-Joe , he needs all the prayers he can get right now , the pain has kept him awake at night also
Maria
Monday the 25th of June 2007
Sammy-Joe is still unwell , but is doing ok considering he feels pretty rotten , life at the moment is pretty hard for all of us , but as the troopers we are,we are fighters and will get through all the hardships , Sammy-Joe has been talking about the USA lately , but this dreams seems to far away for all of us , and also he has been talking about his indoor playground which is also a dream too far away to reach , there is nothing wrong with hoping and dreaming though , hopefully soon things will change for the positive , Sammy-joe is definately ready for a change , he is learning so much lately and wanting to improve , he asks so many questions , I really didnt think he would ever get to this stage , all the herbal meds are keeping him calm and although its quite an enormous expense , it is well and truelly worth it all especially to see Sammy-joe improving so much more , like I said , he is feeling unwell , but still has scope to learn ,its pretty amazing , I am so grateful .
Maria
Sunday the 24th of June 2007
Sammy-Joe isnt well again I had the local doctor come out on Friday to see him , Sammy-Joe has an ear infection and throut infection and a chest infection , he had a fever for four days , he is now on antibiotics again ,it seems that every three weeks Sammy-Joe is on something because of infection , his bard button is also infected at present ,not a good week for our young man , hopefully this week will see some improvements
Maria
Tuesday, June 19, 2007
Sorry for the lack of updates , last week we had a busy week with builders coming into our house , they worked on the bathroom modifications and fit in a disabled access shower for Sammy-Joe , this is why I havent been able to update as the house was upside down for a while and I didnt have access to the computer , we also had the bed in the study , this threw Sammy-Joe off with his sleeping pattern again , and is still trying to adjust again now to the house being back to normal .
Christian wasnt well either and had some days off school , so things were up in the air for him , he even missed one week of basketball , so hopefully now I will be able to update the journal more frequently as things get back to normal in our house .Sammy-Joe is unwell at the moment ,he has thrown up and is sleeping alot during the day ,apart from all of this he has been doing well with the rewards chart and also with going to the Library and video store for borrowing books , he is pretty amazing when it comes to will power and is willing to learn alot , the carers are doing well with keeping up the encouragement and they too can see that developmentally he has improved alot through the months
thank you to everyone that has continued to check on us and are always helping out in anyway they know how , if it werent for the amazing love and support of these people we would not be able to cope with our very difficult life ,, amazing stuff !! thank you to all of you .
love and hugs
Maria
Saturday, June 2, 2007
Yesterday evening Christian played his 100th game of basketball , they lost by five points but were up against a team that is second on the ladder , so they did really well, Christian scored 8 points for his team and we were fortunate to have our sponsor there to witness it all , he enjoyed the game and at the end Christian was presented with a Ball signed by his team mates and also a framed ceritficate . we are very proud of him ,, basketball has been Christians safe haven and his release from the everyday stresses of his very busy life with his brother , he dedicates all his games to his brother Sammy-Joe .
Here are some photos , Thank you Steve for sponsoring the Team !!
Maria 
Saturday, May 26, 2007
Again I would like to appologise toeveryone that read s this journal for Lack of updates , I am sorry its taken me so long to write another entry .
Its been pretty hard for me as I have had a lot on my plate to deal with .
Sammy-Joe isnt well again , he has a lingering cold and I am sure he still has a UTI that he is dealing with , his behaviour hasnt been too bad but I can see that he isnt right , a mother knows these things , his sneezing is annoying him and he has been wanted to sleep a lot lately which to me a sign of him being unwell .
Joe has been dealing with his depression and is looking much better lately he has been receiving some support from VERY SPECIAL KIDS and of course has been on medication for 10 days now ,but is looking heaps better and feeling much better , and I have received some support from Melbourne City Mission as we are still considered a family dealing with crisis .
My parents are also receiving some support from the council workers and its been great to know that the DHS has also supported us with the fact that I am the main driver in a very hard situation so they are looking at trying to sort something out with the council for my parents .
Christian has also been unwell at the moment suffering some headaches and migraines , he is doing well in basketball and we managed to get the team some good sponsorship for the year , so I am very proud of him right now .
Well , I have also been a little down lately and havent really wated to write anything , usually writing makes me feel better but lately Ihave just wanted to rest whenever I have a free moment , I fall asleep as soon as myhead hits the pillow and this tells me I am tired , cos usually I have trouble sleeping .
Sammy-Joe is back on the Melatonin which cost 96 dollars abottle of 50 ml , we couldnt beieve it , but it seems to be starting to kick in again .
the bathroom modifications are finally going to start in June and this will be a great help as it will be much easier to shower Sammy-Joe soon .
We still havent come any coser to making a decision about going to the USA as we are looking into it closer now and making some final decisions about whether to go in sept or feb 2008 , this will give us more time to raise some much needed funds for the Trust Fund
the other reat news is that we finally got DGR status for the Friends of Sammy-Joe Foundation and I wanted to thank Clayton Utz solicitors for all of their help thank you thank you thank you , I am sure these people are Earth Angels
PLEASE DO SIGN THE GUESTBOOK TO LET ME KNOW YOU HAVE BEEN HERE
Also thank you to Luisa , Scarlette , Celeste and Chris for sending Sammy-Joe a cd rom , he like s it and has been playing with it the last couple of days , Sammys Science House , he thinks its named after him ,its so wonderful to see him using the computer so confidently .
Also Thank you to Janet Henry for all the good work she does for us , I am so grateful for all the wonderful people I have met through this journey , Sammy-Joes life has enabled us to meet so many wonderful people . thank you
Maria
just some hints to other families with children with an illness
Every family is different, but there are a few problems that many have in common. These include:
Differences over discipline
Inability to handle problem behaviors
Withdrawal by one parent, or by one or more siblings
Overinvolvement by one parent
Burnout
Resentment
"Genetic blame"
Parental neuropsychiatric problems
Breakdown of extended family relationships
Community isolation
Financial problems related to disability
Sibling rivalry compounded by behavior problems
Be creative in your solutions, and don't worry about whether your family's way of coping is "normal" or not. Go grocery shopping at midnight, order clothes from catalogs, put a lock on the refrigerator, set up a cot in your room for your child who has night terrors. If it works for you and harms no one, it's all right.
this is just some way I have coped with my very difficult situation , I have tried to make it work for us .
Maria
Wednesday 23 rd of May 2007
Sorry for the lack of updates , I have been so busy every single day ,I took my dad to his appointment yesterday at the hospital , left the house at 8 am got back at 1 pm ,Sammy-Joe was looking for me a lot , its been hard for him lately cause even thou he has carers he has been used to me being very involved with every single one of his needs , its been [retty hard for him to get used to me not eing here alot lately , I have many appointments for my dad to attend and being the only driver now I am the one that needs to take him , Joe has to work so its impossible for him to help me , but he does help me alot once he is home , his depression seems to be lifting with the help of the meds , so at least now he is actually functioning again in and around the house .
Last night I dreamnt I was being attacked by crocodiles and woke up screaming , Sammy-Joe came in to see what was wrong with me at 3 am and we have been up ever since , it is now 6.46 am , I think my dream is pretty symolic to my situation right now ,where I feel like my life is out of control because of constant situations being thrown at me , but I think its a way of testing my strength , if I want so physically tired I think I could keep coping , but I am exhausted and need a break , unfortunately no chance of that , I need to be here for my family as they have so often been here for me .
Life islike that you never know when its aboutto change foryou and this is when you can see how strong you truellyare and how strong your character is , I believe I am a strong person , but I am just tired .
Ihave many decision s to make regarding the fund rasising now as I need to decide what is the priority for Sammy-Joe , should we stay here and continue to provide a good quality of life for the rest of his life as long as the money from the fundraising allows us to , or should we take him to The USA , where there is still no cure ,no change in treatment ,use up all the money that has been raised and then struggle to continue to raise money when we get back , I would still like to go.I know also how hard it is to keep raising money to cover all his every day expenses to give him a good quality of life here , the cost for Sammy-Joes health needs is enormous ,his personel needs , such as nappies , wipes ,meds and his creams , suncreams and protective clothing is enormous , the cost of extra therapy , and if I want to continue on with some sort of schooling next year ,because he is over 18 nothing is cvered by the education department ,, and then just us trying to keep the house mortgage repayments is enormous if we need to cover all of Sammy-Joes needs from our own very low income , its very very hard .Raising Money is very hard also .
I know I have to stay positive and trust that things will work them selves out for us and the answers to all of this will come to us soon .
On Sunday we had a visit from the TATE fAMILY , They have Madeline that has TTD also and they understand totally what we are going through , I will try and load the photos on to the page as soon as I get a chance , I would like to say Thank you so much to everyone , that prays , looks out for us and for everyone that checks in on the webpage ,please be sure to sign the guestbook and please know that I am grateful to you all
Maria
Thursday, May 17, 2007
Sammy-Joe has been a bit of a superstar lately ,eating his spaghetti on his own and also twirling the fork like my mum taught him , he is so proud of himself and also he has been eating cheetohs , wow what a huge improvement on his behalf ,he has regained a significant amount of his abitily to chew and swallow although at times he still finds some foods hard , he doesnt want to use the food peg at all , he has been trying hard to just eat and although the majority of the time the food is soft food , its still great that he is just chewing and eating ,, big improvement on his behalf .
Christian is doing well with basketball ,, all three teams .
He is also doing well at school , he is trying very hard to improve in all areas and is making a conscious effort to stay positive .
Joe too is trying hard , but is still suffering depression and is now on antidepressants , he is trying hard to beat this but obviously needs lots of time and TLC
My dad is improving and is determined to get his life back after the stroke ,,, and me,,,,, well,,,, lets put it this way , I feel like I am looking after three generations right now ,because I have less support and more responsibilities ,
I need a bit of a break ,, but I guess God has other plans right now .
I feel that everything happens for a reason and maybe these things happen to trial us ,,but I am just pretty tired right now .
please pray for us
Maria
ps dont forget to sign the guestbook
Friday the 11th of May 07 10.27 pm
I was so proud of Sammy-Joe today , we took Christian to school today and Christie also came along, then we went off to the hospital for our appointment with the Gastro team ,The doctor was so impressed with Sammy-Joe s behaviour , Sammy-Joe was so well behaved he waited patiently , I read him some books and then he watched a dvd while we waited for the doctor to see him , that was impressive , but what was more impressive was the fact that Sammy-Joe let the doctor examine him with no protest, he also asked if he could take the doctor home with him , it was so sad because this was our last visit with Doctor Alex as now , Sammy-Joe needs to be referred to an adult doctor , we then went to visit the starlight room , in the Starlight room Sammy-Joe wandered around making sure everything was still as we left it , he also wanted to go to the Craigieburn Library ,we were so happy and proud of him as he borrowed his books and videos , he was so proud of himself and like Christie said ""so he should be "" For Sammy-Joe to actually copewith doing all that in a day is very very impressive , we are classing this outing as one of our excursions , the BIST team and homeschooling team has been suggesting trying to get Sammy-Joe to the Library ,wow , how impressed are they going to be next tuesday that Sammy-Joe actually intiated it all himself , our next thing will be a visit to the Movies , we will have to work at getting him to go and thisis usually by encouraging him with theidea for about two weeks , this is what Christie and I did for the last two weeks about the Library and today he decided he wanted to go ,after two weeksof protesting andsaying ,,no no no , today he intiated it all on his own , we didnt even mention it at all .
What a good day !!!
please dont forget to sign the guestbook to let us know you have been here , we are grateful to you all that check in on us everyday ,it is wonderful and encouraging to us to know we have friends and people all over the world that care for us .
Christian s team won tonight , tomorrow he has another game .
My dad is improving slowly and things seem to be looking up , apart from me being very busy , I am actually looking after three generations , my children , my parents and my husband , Joe is suffering with depression and is trying to get through the best way he can , work seems to be a good distraction for him , it is understandable after everything we have been through for him to be feeling all of this sadness .
I have been experiencing alot of stress headaches ,but I am hoping its just cos I am a little tired .
please keep usin your prayers
Maria
.
Monday, May 7, 2007
SammyJoe hasnt been well , he has had a UTI all week and is on antibiotics for it , he hasnt been well .
I have been very busy with both him and my dads needs , its been a pretty hard month for me , but I guess I am the strong one.
Please pray for us and please pray for Brookes dad he is having surgery as we speak , I am so sorry its a very small update , but I havent had much time on the computer lately due to being so busy with everything else , my dad is getting therapy soon and Sammy-Joe too is getting OT once every two weeks , everything else has kept me busy , running around to doctors appointments for both Sammy-Joe and my dad , imbetween everything else .
please sign the guest book to let me know you have been here
Maria
Monday, April 30, 2007
It has been a busy day , so I must apologise for the short update ,Sammy-Joe isnt well , he is showing me signs of having another UTI so I am going to have to try and get a sample ASAP , In the mean time I have to also try and collect my DNA and Joes because the doctors at the NIH have requested it , they must be getting close to some sort of Answers with the genes , so hopefully this will one day help towards finding a cure .
I know and suspect that it may notbe in Sammy-Joes life time , but at least Iknow that its because of Sammy-Joe that much awareness has been raised , I will always let his memory live on , till the very day that I am no longer here because Sammy-Joe to me has been the most inspiring person Ihave ever met ,he is truelly my hero , he is always smiling even when he is having the worst day possible
Maria
Friday the 27th of April 2007
Life still is quite hard at the moment and having to deal with alot of emotional stuff is pretty hard on all of us , losing someone you love isnt an easy way to learn lifes lessons , if it is a lesson , life is just too hard right now , my dads stroke , uncle Charlies passing and also dealing with the reality that my sons illness brings to us is tormenting ,, you would not feed a child that is allergic to peanuts , peanuts would you , and well that is the same for Sammy-Joe , we cannot expose him to light , we have to be able to find a way to deal with his illness in an safe enviroment and the safest way possible ,there has to be a way that the government departments can help find a place for him to be able to get his social part of his life going , there is no day program that will cater for my son , there is no program that will tint windows , or tint transport vehichles to suit my son , so what choice does it leave us , it leaves us none ,,, Sammy-Joe must stay at home be homeschooled once a fortnight and the rest we have to come up with our own type of program which the carers and myself are nowimplementing , Sammy-Joe hates going on excursions because of the light factor being so iritating to him and so he prefers to spend alot of time at home ,he has only been on four outings since November last year and then he also just goes to the hospital visits and sometimes this is enough exposure to upset the apple cart that is his complicated immune system .
Well thought I would just write that in because I needed to express my thoughts , I am praying for some help because we really would like to make things happen for Sammy-Joe , last week there was an episode on House the tv show and it was about a little girl allergic tolight , it was so good tosee that these producers made the episode so close to real life , everything she went to was like Sammy-Joe has been through , the torment also that the parents felt was like what we went through when they were trying to work out what was wrong with her ,and also what the doctors went through , not knowing what was happening to her , it was like looking at our lives ,I felt like the writers have taken bits of our life and put it on screen ,,,amazing !!1 I wonder if an Australian writer will come up with something , that would really help to document what its like for parents that have children with an illness
Maria
Friday 27th of April
Uncle Charlies Funeral was yesterday , Joe came back prettyupset ,I was sad that I couldnt go , but needed to be home with Sammy-Joe , I didnt have a carer imbetween shifts so it was impossible for me to attend the funeral , I saw Aunty Pina on Monday , and am very saddened and upset about the whole situation Cancer is terrible and how quickly people pass is so sad ,Uncle Charlie is a good man and now as he is in Gods Kingdom I am sure heaven is a much brighter place because he is in it .
Sammy-Joe is behaved yesterday nfront of the bist team Lady , butitwas good that she got to see what he does when he is in action , he kept trying to get my attention by hitting me and biting me hugging me too tightly , so we will implement new strategies now to try and stop him when ever he starts to get too rough with me .
Maria
Monday, April 23, 2007
Life doesnt seem right , Uncle Charlies passing,my dads stroke , Sammy-Joes illness , my husbands depression , its so hard lately for me to deal with everything , but I guess it seems I am the strongest and I have to keep dealing with things , lately Ihave just been on a downer and I know there aremanythings that I must be grateful for , but today I just want to deal with it this way .
I also havent had anytime to take any photos of the kids so for a while I may leave my journal photo free at this stage , March and April2007 and have not been good months , too much sadness in the family right now .
thank you to everyone that has been checking in on sammyJoe lately ,he is doing the best he can at the moment , his behaviour is getting better with the help of the strategies and also the herbal meds , the problem is they are so expensive and I am not sure how long I will be able to keep this up for , it is working and keeping Sammy-Joe alot calmer , he is concentrating more also and understands redirections easier .
overall I am happy with the result of all the herbal meds .
Maria
Monday the 23 rd of April 2007
Uncle Charlie passed away on Friday Morning around 3.30 am , please say a prayer for his children and wife , this is a very difficult time for everyone , Joe isnt coping too well with it all .
I havent been able to go because of Sammy-Joe not being too well at the moment also .
He has been calm, butI feel he may have another UTI , so today I will call the local doctor again .
please continuetoprayand thank you for signing the guestbook.
Maria
Thursday the 19th of April
April , this has probably been the toughest month in a long time , last year was hard with Sammy-Joe being so unwell and it was the beginning of a time when his symptoms were the worst for him , this time its bad because for the last four weeks we have had to deal with many changes , plus Sammy-Joe being unwell and also my dad havinghis stroke , life has been tough , so its only natural I guess for me to feel a little flat and sad , I had a big cry tonight because I foundoutmore bad news , Uncle Charlie is back in hospital and probably wont last the week , this wonderful man full oflife in thelast five months has gone from being a man full of life to a man that is withering away with Cancer ,life isnt fair and especially to his family, that loves him so much and now has to deal with saying goodbye, Joe went to see him tonight , but I couldnt go because I needed to be with Sammy-Joe , Joe and I had a cry when he got back from seeing him , its just not fair life is so hard especially when there is illness , please pray for Uncle Charlie and please continue to pray for my dad , please pray for Sammy=Joe , I pray my son has many more years with me , tonight I watched a show called House and in it was a story about a little girl allergic to light , I thought this to be a break through because at least the public will see that these illnesses truelly exist . all the things she went through reminded me of how much Sammy-Joe goes through , life has been hard on Sammy-Joe , life has been tough.
Maria
wednesday 18th of April
I wanted to say a big thankyou to Brooke for everything she has done for me in this trying time , we have had to adjust to a new way of living again and Sammy-Joe is being a big Star about it all ,he misses my mum terribly but understands that nonno is sick right now and so he cannot have her like he used to , he is doing fantastic with the carers and I too am grateful to everyone that has helped and pitched in , because at the moment, I am like a chook without a head running around everywhere trying to do a million things at once .
Joe has been great also and Christian , well,,, what CAN I SAY , he is such a super star , we love him heaps and we love Sammy-Joe heaps , there is nothing greater in life than FAMILY , having family and friends is the best thing in life , the love of your kids the love that having a united family brings , there is nothing greater . for this I am grateful .
please dont forget to sign the guestbook to let us know you have been here
Maria
Monday the 16th of April 2007
Sammy-Joe loves the Bombers 
Sunday the 15th of April 2007
Christian s Team won the Tournament here are some Great photos of the team after the grand final .
Christian enjoyed the tournament and all the boys gave it their best shot and they all played well as a team , I was very impressed with the Team work , Christian spent the last half on the bench because he injured his ankle , but otherwise it was a good game all round and a good weekend for him .
Here are the photos 
Christian and Team Mate Nick
Christian , Nick and Dylan 
The Team after the game 
Trophy Presentation
Friday, April 13, 2007 10:51 PM CDT
Life is like a yo-yo... Hi everyone, its Brooke here writing this journal entry for Maria.
Marias Dad is in the very best of care at home with his family however I know his Neurologist and feel he is getting the best care that he requires. His Neurologist is my neurologist. He is home however very frustrated as everyone in the family and especially him have to deal with the changes that have occurred with a blink of an eye lid. He is on a walking frame and requires rehab so its hard on her Mum (who I affectionately call Nonna) as she needs to help her husband with everything now and its hard for her as she has not been able to spend all that much time with Sammy Joe. Marias Dad is 6 ft 2 and is as light as a feather at 52 kilos.
As you could imagine life yet again for this family as been thrown into sudden turmoil and as a result Maria (Mum) has got a cold, has low iron, calcium and vitamon d levels as she is trying to be the angel that she is to everyone. So Mum when you read this, remember that you don't need to be Mrs Fix It for everyone we now how much you love us all and together we will get thru everything. Hurry up Mum and get better, alot of people need you to be well, strong and happy.
Sammy Joe has been a true soldier throughout this whole ordeal however his health is also not at its best. Sammy Joe was seen by the BIST team, they provided Maria with a program to change his behaviours in the hope that they could see what triggers him. However Maria feels his behaviour is better due to the herbal medications. Sammy Joe has also gone thru a change in his peg food as he has developed a lactose intolerance. His Peg is infected and he has an urinary tract infection so he is on another round of antibiotics. Sammy Joe was also taken to a Psychiatrist and the psychiatrist got a taste of one of Sammy Joes moods. Sammy Joe is no longer under a peaditrician for his meds and thats why he was sent to a psychiatrist.... review of meds.
We would all want to wish Christian luck this weekend as he has continued to play basketball and complete the Whittlesea tournament. Christian you take everything in your stride mate, no words could tell you what you mean to your family but your invaluable. There only 1 precious Christian, so hang in and be strong because we all think the world of you.
I think you'll all agree that this is one strong family who never fail to amaze us with their love, their wisdome, their strength and love of life. So as we cantinue to pray we remind everyone that they are not alone for there is someone in the world always thinking of them.
Stay safe,
Brooke x
Sunday, April 8, 2007 7:00 AM CDT
This morning I received an SMS from Maria and I wanted to share it with you all on her behalf:
Happy Easter! My Dad is home now. He is walking, talking, eating, laughing and happy to be alive. God has given him a second chance at life. There are still things he can't do but in time he will be able to again.
* So from Sammy Joe, Maria, Joe, Christian and Family (Including me) have a wonderful and safe easter. Your all in our thoughts and our prayers,
Brooke xxx
P.S. Thanks everyone for all your support, love and prayers over another hard week.
5th of April Megan Miller
It is with a painful heart and tears streaming down my face that I let you all know that one of our children that has TTD has passed away and earnt her wings on Sunday , little Katie Miller passed away in her home leaving behind a precious family and a beautiful Mother , Katie is one of members in the TTD support Network and has let me know that her precious Angel Megan has passed away , my heart goes out to this family , I am so sad , TTD is a terrible illness , please keep our families in your prayers , please try and raise as much awareness as we can
please know that these precious children suffer everyday , when they should be enjoying their lives they are struggling to stay with us as long as they can .
please please pray
Maria
5th of April 2007
My dad is improving everyday , yesterday when I got to the hospital with my mum it was good to see him sitting up in his chair and trying to eat his breakfast using the arm that was paralysed untially from the stroke , it was also great to see him trying to walk again , he is determined to recover , the doctors and everyone around him consider this a miracle , so its pretty amazing how quickly he is recovering , and in no time I believe he will be at home with us in a couple of weeks , the main thing is we keep him positive and comfortable and the doctors can try and find where the cause came from .He will be undergoing more tests today .
Sammy-Joe is coping quite well with all the carers and the different people in the house , but still misses me lots , I try and stay with my mum and dad at the hospital for over five hours and then head off home again , leaving my mum at the hospital , then my brother takes over from me .
Joe my husband has been helping also as much as he can , remembering that he also has to work imbetween all of this crisis right now .
Please keep up with all the prayers and thank you also for everyone that has prayed and thank you my beautiful Brooke for helping me out with updating the journal , I will keep Brooke informed on my dad s progress and then Brooke will update whenever she can .
thank you Brooke and thank you to everyone that has prayed , this is proving that the power of prayer is amazing and thank you also to my inlaws for helping me with Sammy-Joe the last couple of days and also thank you to all the carers that have stepped in on this emergency situation , Thank you to everyone also for helping out with poor Christian because life on the holidays always is tough for Christian , he tends to spend most of his holidays with someone he loves in and out of hospital , life hasnt been fair for Christian either .
love and hugs
Maria
Tuesday, April 3rd, 2007 11:30AM CDT
Hello,
How are you? I hope this finds you well and happy. What have you been up too? It is Brooke here, putting this journal entry in on behalf of the Liistros.
Maria's (Mum's) Dad is doing ok for day of surviving stroke. The doctors are retraining him to eat, walk, talk and to do things for himself. Maria wrote in her SMS, "I am very proud of him and love him very much. Sammy Joe must get his will and strength from my side of the family because my Dad is just as determined to improve as SJ is." So there's a little update for you and I reassure you I will keep you all posted as I get updates.
A heartfelt thanks to all who have prayed and supported this adorable family as they face more adversity with such fighting determination and loving spirit. Please join me in continueing to support this family.
- Brooke x
Monday, April 2, 2007 8:55 AM CDT
Hey Everyone,
It's Brooke here and I am happy to report that I received an SMS from Maria, aka Mum last night. Her Dad was injected with a drug within a few hours of him having the stroke and he is slowly improving. He will be in hospital for a while and will need rehab so please keep Marias Dad and their families in your prayers. I will ring Mum later today and get an update so I will be back in here shortly but until then take care of yourselves and each other.
- Brooke xxx
Sunday, April 1st, 2007 12:05 PM CDT
Hello Everyone, It's Brooke here. Maria, aka Mum has asked me to bring you all up to date with her news. Maria is standing by her Dad's, Joes, hospital bed because he had a stroke early hours this morning. Maria asked me to let you all know so please join me in prayers to help heal her dad, Joe. Of course, we can't forget our special treasure, Sammy Joe. Mum, Dad, Sammy Joe, Christian and family our love and thoughts are with you. Remember, to close your eyes and search your heart because we are all their for you.
When I get an update, I promise to let you know but until then please take care of yourselves and your loved ones.... life is too precious!
- Brooke xxx
Thursday, March 29, 2007
Time to begin a new chapter in our life with more positive outcomes , this has been my motto today , I have decided that I am not going to let anyone upset me any more because only I know what it feels like in my shoes and I onlu know what it feels like to be determined to make things right for My son Sammy-Joe , I am grateful to every single person that has supported us and been with us every single step of the way and that includes to be with us here , reading this journal and signing the guestbook , attending events held for Sammy-Joe without question , being there to support him , loving him for who he is ,loving us for who we are as a family and just being with us every step of the way .Thankyou to you all , please be sure to sign the guest book this way we know you have been here to visit Sammy-Joe .
We love you
Maria
here are some beautiful photos I tool of Sammy-Joe and Christian , one evening when the rain finally came , "after the rain the flowers smell sweet and the grass smells beautiful '", these are Sammy-Joes words .
Playing Blocks
too much light
clowning around
Wednesday the 28th of March 2007
Its My mums Birthday today ,, Happy Birthday Nonna Milla to Sammy-joe and my beautiful mum , very special lady with strength , courage and kindness , some of the qualities which I think I inherited from her , except she is the most amazing cook on this entire earth and no one can ever beat her cooking !!
Happy Birthday Nonna Emilia , we love you !!!
Maria , Joe , Sammy-Joe and Christian xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Monday 26th of March 2007
Sammy-Joe is playing happily inside with his toys ,taking them all around the house ,although its cold the sun is still out and UV is still pretty high , thank goodness daylight savings has ended and Sammy-Joe can venture outside earlier now , but we still have to measure the UV , things are pretty shocking with his behaviour , he is hitting us and lashing out and causing all sorts of problems , by being frustrated , but we dont know what could be causing it all .Could it be hormonal , could be frustration could be hunger , cos he constantly is asking to eat when he cannot , its frustrating , need to get to the bottom of it all .
Maria
Sunday March 25 th 2007
Today I want to talk about what people have been saying to me , the worst thing anyone can ever say to a person that has a sick child is that there is worse out there than your child , because for us we cannot see past what we are going through , the pain and intensity of every day is enormous and we cannot even imagine worse than not being able to enjoy living in the light , Sammy-Joe cannot venture outside easily , he cannot cope in a well lit area , he cannot go to the beach or enjoy playing in the sun like other children can , he hasnt had the opportunity to be like any other child , and when people say there is worse out there , yes we know that there are alot children out there that are chronically ill and that are suffering and I even know some of the families that are going through worse and we can understand what those families are going through , we understand their pain , their grief , their anguish , we as parents know whats like for them .
I am wondering
does anyone really and truelly know what its like for Sammy-Joe , he cannot enjoy a single day , he constantly worries about getting burnt , he and we have to worry if he is doing the right thing even if he ventures outside for ten seconds , he has to be in full protective clothing , he has to make sure he is covered by some form of protective cover and even then we have to measure the UV , we have to make sure its less than 1 , he then feels chronic pain whenever he is exposed to any form of UV , and it goes on for days , weeks months , the damage that happens in that single ten seconds is damaging for a long time , the next day we can be guarrenteed that he will have a vomit , a blisterey rash , he will be chronically sick or have diahorea every hour of the day , he will be bedridden , it will alter his behaviour ,making him aggressive and he will be frustrated , his autistic behaviour will be amplified , he gets frustrated and stir crazy , just from trying venture outside like every other child , the right that everyone has to enjoy the daylight has been taken away from Sammy-Joe and he doesnt have a choice in it .
SO PLEASE DO NOT TELL ME THERE is WORSE OUT THERE , instead be compassionate , understanding and try and help in any way you can , because although I know that there are children going through worse , they can still enjoy the sunshine and enjoy a day full of light , My SON CANNOT
Jelly beans & Jesus
Have you heard the story of the jelly beans?
Little jelly beans
Tell a story true.
A tale of our Father's love
That's just for me and you.
GREEN is for the new spring grass.
YELLOW is for the sun above.
BROWN is for the soft earth where
People sat hearing of HIS love.
PURPLE'S for the robe he wore
RED is for that precious wine.
BLACK is for the sins He washed
From your soul and mine.
BLUE'S for the sadness of
HIS friends and family,
and is for the glory of the Day
HE rose for you and me.
Now that you've heard the story
You know what each color means.
The story of our Father's love
As told by jelly beans.
So when you see jelly beans on this Easter season,
stop and remember,
Jesus is the reason!]
Ask my Mom how she is
My Mom, she tells alot of lies
she never did before.
From now until she dies,
she'll tell a whole lot more.
Ask my Mom how she is
and because she can't explain,
She will tell a little lie
because she can't describe the pain.
Ask my Mom how is she,
She'll say "I'm alright."
If that's the truth, then tell me,
why does she cry each night?
Ask my Mom how is she,
she seems to cope so well.
She didn't have a choice you see
nor the strength to yell.
Ask my Mom how she is,
"I'm fine, I'm well, I'm coping."
For Gods sake Mom, just tell the truth
just say your heart is broken.
She'll love me all her life,
I loved her all of mine.
But if you ask her how is she
she'll lie and say she's fine.
I am here in Heaven.
I cannot hug from here.
If she lies to you don't listen,
Hug her and hold her near.
On the day we meet again,
we'll smile and I'll be bold.
I'll say, "You're lucky to get in here, Mom
with all the lies you told!"
-unknown
Maria
Saturday the 24th of March 2007
Sammy-Joe s behaviour is all over the place again and he was up all night long , very unsettled , he has been complaining of sore skin ,this is usually the result of the light exposure and when the sun hurts him it feels like one million pins are pinching his skin , he keeps telling me to scratch his skin for him .
Today Christian has another basketball game , lasts night game , they played well against Sunbury . but lost , although I think they couldve won at one stage because they were doing a great job keeping up with them .
I will let you know how todays game goes and also I will try and take some photos of the boys .
Maria
Friday the 23 rd of March 2007
Sammy-Joes peg button 
Yippeee , Sammy-Joe finally slept through the night ,, we hope this is the start of a new phase , he is on stronger dose melatonin and he is also on herbal meds and his regular meds and also the new meds that the Gastro doctor suggested and I think its all working finally especially for the sleep , I dont want to speak too soon , but we never know because its the first time in a long time that he has finally slept all night long without interrupted sleep .
And he did it all in his car bed in his room ,, big break through for us as a family , because we are constantly playing bed hop during the night , he usually kicks us all out of our beds , and interrupts all of our sleep.
please keep those prayers up
I received an email this morning from one of the docs in The USA requesting more DNA samples as they are hopefully getting closer to finding some answers , this is all good news for all of us and also it helps me to understand that all that I have done for Sammy-Joe has been the right thing for him , and I know they may never find a cure , but maybe the cure in a way can be in the way you chose to live because his chances of surviving more are because we are taking all the right steps in keeping him in the dark , its all exciting news to me , I am so happy that God led me to the right people and that I have trusted my inner voice and trusted God .
Sammy-Joe is a challenge every single day , but life without him wouldnt be the same for all of us , so please pray that some answers are found and some right answers to keep him here with us longer . We all love him , Christian was saying to me yesterday , that he doesnt want to be anywhere else , he wants to be with us together as a family and that if one of us is missing ever , it just isnt the same ,, Christian too has been through a lot in his life because he has had to watch , wait and be patient for many years , this child has had to grow up fast and his quietness comes from having the wisdom to know what life is truelly all about .
Having an ill person as a family member certainly throws you into reality and shows you what life is all about .
My heart goes out to Ben Coussins family and to Ben himself because I know that life has given him challenges obviously from making the wrong choices in life , or dealing with the wrong crowd, people that have given him the wrong idea , it must be hard for those people that have influenced him on the wrong path to sleep at night , now seeing what has happened to this wonderful young man , my heart goes out to him and his family , thank goodness he has time to save himself , all the things he did he did by choice , and obviously wrong choices , people and children with an illness do not have a choice in life , they have to trust the good doctors and God to help them find a cure , and although he is going through this I believe he has a chance of helping himself , also I would like to say I believe he is a very brave young man having to admit all of his vices in the public , its the hardest thing to do in life asking for help and I believe you are strong Ben and you can get through this , stay focussed and life will return to the way it was m but you have to be strong , , please pray for this young man and please pray for his parents because I can understand what his family is haing to deal with right now , I believe his family is in a lot of pain and his family needs to have support and love , not people mocking him or teasing him , I was so sad to see people in the public eye making jokes from someone elses misfortune , its disappointing. we as humans are meant to be supporting each other not making it more difficult for the one that is suffering , I believe people can only know when you are walking in those shoes yourself .
So please to everyone out there pray for all the people that are going through a hard time and please pray for all the Bens in the world because his family is obviously suffering through this too .
Maria
Thursday 22nd of March 2007
Surgery went well ,the button has been replaced with a brand new one , the doctor was just concerned about the redness,inflamation and erosion he saw , he has taken a biopsy and also placed Sammy-Joe on stronger medication , he believes Sammy=Joes behaviour has flared up because he must be experiencing pain whenever he is fed because there is so much more inflamation there now , we are home and Sammy-Joe is asleep .He has a slight Tempreture ,38.3 but its understandable because he has been light exposed because of the surgery , I was so worried through out the whole time, and he was so calm about it all he kept singing and speaking sooo loudly ,it was funny , he was wheeled into surgery singing with the nurses and doctors The Barney song , ""I love you you love me "" , he just wanted the bed , the hospital bed ,,lol,, funny boy , it was so good to see him so calm about it all , just very very loud , one of the nurses that knows us came up and said ""I knew it was Sammy=Joe when I heard all the singing , what a funny boy , Thank you to all the staff at the RCH , thank you for making our life easier .He is a brave boy , he threw up a couple of times also and that too was because of light exposure and surgery , but otherwise he is fine ,, a strong boy ,, I am sure its because of all that he has gone through for so long , he has toughened up alot .
thank you for all your prayers .
Also A BIG Thank you to the boys from SEN 1116 Morning Glory Show To the Rescue , they have organised with Chris from Clark Shades some roofing that has UV blocking for outside , that is wonderful !! Thank you , Billy , Tim and Andrew and of course ADAM for all that you have done for us . Thank you for giving me the opportunity to speak about my son , I am very grateful to have wonderful Understanding and compasssionate people around us ,, thank you again for everything you have done .
http://www.sen.com.au/
This is Tim Watson , when Sammy-Joe was just Four years old ,, Sammy-Joe wanted to be held by Tim in this photo, Champions together .
Thank you also to the generous people of Pacific Brands Wharehouse at Kayser Hoisery Australia , all the workers and staff that work with my hubby Joe , they helped raise a wonderful amount of money that will go towards Sammy=Joes medications .
In the last week we have spent over 300 dollars just on meds for him , Sammy-Joes medical costs are on going and increasing with time ,, so thank you so much for your kindness and generosity , your support , kindness and friendship is something we will treasure and be grateful for forever .THANK YOU STEVE, HARRY AND GARRY... You guys are stars ~!!! thank you so much !!
Congratulations to you boys for your great efforts on Friday the 16th of MARCH WHEN YOU HELD WORLDS GREATEST SHAVE FOR LEUKAEMIA AND FOR Sammy-Joe ,,SHAVE FOR A CURE DAY .. Well done !!
Maria
Life has been so difficult for Sammy-Joe , he has been so frustrated the last few months , and now he is up for surgery tomorrow again , he is not looking forward to going to hospital , he has been saying he is scared , I told him not to be because Dr Alex loves him and will look after him and wont let anything bad happen to him .
I will update once we get back from hospital and if we end up staying in I will update from the hospital , please please keep Sammy-Joe in your prayers .
Christian is feeling much better now and will be bacl at school , he felt quite tired and ill yesterday , but got over it quickly , I think he gets pretty tired from all the sport he plays , but otherwise he does ok , he keeps saying its not fair , Sammy-Joe would be driving by now , maybe going to Uni , or taking him out and he would probably be playing with him on a team , he gets very frustrated on what it could been like for him to have an older brother that wasnt so unwell and didnt have a disability , but he does say he loves Sammy-Joe regardless , but he does think about the what ifs , I told him not to and to just live in the moment , this is the only way to get through life whenever you are experiencing illness ,,, Just live in the now .
I love both my boys equally and am grateful to have them both in my life .
Maria
Harmony Day for Sammy-Joe
I am so grateful to the people that Volunteered there time and to Elenora , she is a wonderful lady with a beautiful soul , and Rose also that organised the day for Sammy-Joe , sometimes when I feel that there is no hope , Earth Angels come along and do the most amazing things , I am in awe of them all and feel honoured to have them in my life , without them I could not get through all our difficult days , Thank you so much , for all that you have done , I hope you enjoy the photos , we had over 150 people come through , and the day was positive and successful , it was wonderful , I loved the enviroment , the energy , the atmosphere , it was all positive .
Thank you to every single person that gave on the day and also volunteered their time , the day was so successful people who came recieved services that are worth at least 20 times more for each service than the amount of entry fee and some people got to do more than one thing on the day , so it was well worth it for people that came , because the beautiful people who volunteered their time gave with all their hearts and the people that came to the event came because they opened their hearts , it was a good day , it was a huge success and thank you to everyone that just came along because they wanted to be here , thank you to the people that came because it was for Sammy-Joe I am so happy and grateful to know that the universe has so many kind hearted and generous people in it , I know that the strength that I have in me to carry on comes from the hope and love that I recieve from everyone that supports us with our every day struggles , I told Sammy-Joe about the day and how much people love him and he just kept hugging me last night , all night saying he loves me , he loves me so much cos I am his mummy .
Thank you to all the beautiful Earth Angels and to all the people that came .
Thank you to everyone that came and took part in the day 
A beautiful soul 
Today was a fantastic turn out , we had over 150 people come to the day and it was brilliant , we had a ball , Sammy-Joe you are sooooo loved ,
thank you to everyone that came and to all that volunteered , thank you to Rosa and to Elenora , to Rachel , Anna and to Suzanna and to Anthony , to every single person that did Reiki and to all the healers and spiritual guidance people ,thank you to everyone , I will post some photos tomorrow as it is 11.30 pm and Sammy-Joe is looking for me .
The day was a big success!!
The money will go to cover all of Sammy-Joes needs , such as medicines and natropathic , meds and wipes , creams , suncreams , the cost of all the appointments , clothing for sunprotection , pain meds , nappies, booster pads , bandages and medicated wipes , sterile water , and things that are not covered by the PBS
we spend over 300 dollars a week just on Sammy-Joe alone ,
the Trust fund has been set up to cover the costs of all these things
Maria
Sunday Fundraiser for Sammy-Joe
I am so excited , its today and I cant wait , its going to be a good day , and God knows Sammy-Joe needs the help right now , the herbal medicine seems to be helping his mood , the natropath was great , she is really good , she even explained everything in detail to us , so hopefully all will improve and he will be more comfortable now within himself .
I will try and take some photos , hopefully I will see you all there
yesterday Jerildene dropped in to see Sammy-Joe and she gave him a gift for his birthday , so we can now try and buy him some pyjamas , garfield , we hope we can find some for him
this webpage is making me cry because Marci and Susan have done such a beautiful job for me , we pit our heads together , but Christian really came up with what the song and theme should be , and its perfect !! we love you Christian , you are an amazing child , thank you to Susan and to Marci for this creative design , we love it !!
please visit Susans Angel Stephanie
http://www.caringbridge.org/wv/stephanieott
if you get a chance today and say a special prayer for all the children in heaven and to all the families that have been left behind , we love them all ,
Friday 16th of March 2007
Sammy-Joe is our hero , he tries everyday to survive even in the hardest days he keeps going.
Maria
Thursday, March 15, 2007 9.35 pm
Sammy=Joe has had a bad day again , he isnt feeling well and spent most of the day asleep , he also has spent the day screaming at all of us and being angry , its very frustrating to watch him being so upset at everyone , he also keeps saying he is sick , please pray for him
Maria
Prayer of the week
please pray for Sammy-Joe he is having a hard week, he now has influenza and feels dreadful , his nose hasnt stopped ,its always so runny and he feels terrible , miserable and very very upset.
Maria
Prayer to Saint Pio
O God,
You gave Saint Pio of Pietrelcina,
Capuchin priest,
the great privilege of participating
in a unique way in the passion of Your Son,
grant me
through his intercession
the grace of ...
which I ardently desire;
and above all grant me the grace of
living in conformity
with the death of Jesus,
to arrive at the glory
of the resurrection.
Glory be to the Father (three times)
Letters of support
A letter that sums up reality for us from my cousin Sam appealing to the public
I am one of the Trustees of the Sammy-joe Liistro Trust Fund. I’m also proud to say that Maria is my cousin and I was honored when she asked me to be one of the Trustees, because it gave me the opportunity to help Maria as she has helped me along my way through the ups and downs of the journey of life. She is without doubt, the most caring person and dedicated mother I have ever seen. Her ability to remain positive against adversary and dedication to her child is truly remarkable and inspirational to us all.
I've known Maria all my life and am honored to be related and associated with her. Maria is a person who has shown enormous strength of character in her determination to love and take care of Sammy-joe. Unfortunately, love and strength of character can only take Maria so far in caring for Sammy Joe. The cold hard facts of life are that she needs your help. Sammy-joe’s medical requirements are constantly growing. The latest medical treatment is that he now requires hormone drops which will cost $50 per week on top all his other ongoing medical expenses. As you are aware, he now also requires to be fed via a tube in his stomach as his throat muscles have become too weak to enable food to be normally swallowed. Some of these monthly expenses are:
Nappies : $260.00
Wipes: $80.00
Creams $160.00
Solar gear $100.00
Sterile wipes $60.00
Bandages for peg $60.00
Cream for peg $88.00
hormone melatonin $200.00
food thickener $80.00
Total $1,088.00
This is by no means an exhaustive list, but it gives you an idea what the family needs to finance each month on top of everyday “normal” living expenses. Yes, Centrelink does help but as you know government assistance always falls way short of the mark.
Over the past 18 years Maria has constantly battled with her finances in caring for Sammy-joe. The mortgage on the family home has now reached $240,000 and there is little or no prospect of it ever being repaid. Maria has effectively used up her entire equity in her home to finance the care and maintenance of Sammy-joe.
Without your help, Sammy-joe will be deprived of the only chance he has of prolonging his life as he will be unable to afford to travel to the US. If additional funds are not raised for Sammy-joe, the remaining funds raised by Melbourne Markets will need to be used to finance his ongoing medical and other requirements for the next 12 months. After that Maria will probably need to sell her home and who knows what happens after that. Does Sammy-joe have 12 months to live? Who knows! What I do know is that we must do whatever we can to ensure that he has the best chance in life.
When I think of the Liistro family, I feel so grateful that I can get up each morning, kiss my wife and children good bye, go to work and come back home and either watch telly or go out and visit family and friend. On the other hand the Liistro family get up each morning and although they thank god that Sammy-joe is still alive, they face the cold hard realities of life, that is, going to work, paying off a big mortgage and coming home to take care of Sammy-joe. There is never any prospect of a holiday or just time to switch off and enjoy “my time”. Think about how hard life can be to you on occasions and then multiply your worst experience by 100 and that it what this family faces everyday. Children with special needs do not go on holidays. This has been their life day in day out for the past 18 years. It can't be easy and they deserve better than this.
I appreciate that there are other worthy special needs children who also deserve your consideration. I am grateful for all the assistance you have given so far but ask that you find it within your hearts to continue to assist this family.
Your faithfully
Sam Barbagallo
Letter from Heidi
I have known the Liistro family for 10 years now. I met Maria at our boy’s primary school. 2nd day at prep I was talking to my son Brandon when Maria came over asking if everything was ok as she could tell something was wrong. That is how I’ve always known Maria, to be concerned about others. Now it’s my turn to try and help Maria by helping Sammy-Joe.
Maria has dedicated her life to Sammy-Joe. She would have to be the most dedicated mother to her child that I have ever met. Maria wants to continue to give Sammy-Joe a great quality of life and that requires unfortunately a lot of money due to everyday medical needs, nappies and hopefully a trip back to America so he can see the American doctors that are working everyday on Sammy-Joes rare illness to prolong his life.
Having seen what the Lions Club have already done for Sammy-Joe and his family is amazing. The roller shutters on the windows, the down lights that have the switch to increase and decrease the amount of light in the room to make life more comfortable for Sammy-Joe. Even the tinted windows on the car so Sammy-Joe can travel with limited light exposure. There are so many things we take for granted in life and until you see how Sammy-Joe lives I always thank God how lucky I am to have 2 healthy children.
Sammy-Joes home is his castle, his safety in those 4 walls from the UV light. Unfortunately due to the increasing medical assistance that Sammy-Joe requires the Liistro family is running out of financial resources. Without continued assistance from public funds the Liistro family will soon be forced to sell their family home.
As Maria is Sammy-Joes fulltime carer she is unable to work which greatly impacts on the families finances. They have to rely on Centrelink to help them out and as we all know you do not receive a great deal from the. Joe has been working 7 days a week to support his family but realistically how long can someone keep working 7 days a week and then come home to help Maria with Sammy-Joe which is why we are so grateful in what the Lions Club have done for them and this is why we are requesting continuous help. Please open your hearts and understand ,,what would you do if this were your child , at what lengths would you go to save him , I know Maria can sleep peacefully knowing that she has done everything she can to save her precious boy and continious to do so without question . she has shown alot of intergrity and strength and has also shown that her love has no limits , I am proud to call her my friend .
Heidi
Wednesday the 14th of March 2007
What a terrible three days we have had , Sammy-Joes mood swings are terrible and I am pretty sure he has another ear infection and sore throut , his nose is runny again and he is complaining of a headache, not sure if these are all side effects of the melatonin , need to keep an eye on all of this .Life is so unfair for Sammy-Joe right now , but I know if we keep praying , things wil get better , I have strong faith and believe that the Lord puts us in the right place at the right time , so I have to keep strong and do what is right for Sammy-Joe
Christian has been pretty happy also , he has grown another 10 cms , he wants to be a tall basketballer and hopes that oneday he will play for State or even in the big league , I keep telling him he takes alot skill , strength and determination to achieve your goals and you have to keep at them ,so hopefully he will listen ,,,, eeeeek teenagers , its a scary time you know ,
Maria 
Happy Moomba day , what does Moomba really represent , does anyone know ,well today I made it my mission to find out how much people really know about Moomba , and guess what , alot people just think its based on a public holiday .
I wonder if you really know what its all about ?
Moomba is an annual festival in the city of Melbourne, Australia and one of the largest and longest running festivals in Australia. Moomba is celebrated during the Labour Day long weekend (the first Friday to the second Monday in March), and has been celebrated since 1955. In 2003, the event was renamed Melbourne Moomba Waterfest. It is a family festival run by the City of Melbourne Council.
In 1951, Australia celebrated fifty years of Federation with a parade and the staging of the theatre production "An Aboriginal Moomba: Out of the Dark". The following year, the final Labour Day procession was held in Melbourne. In 1954, Queen Elizabeth II visited the city in her first appearance as reigning monarch and the City Development Association and the Melbourne City Council proposed the Moomba Festival. The first festival was officially opened in 1955.
[edit] Parade & Floats
Floats through the streets of Melbourne have been a key part of the Moomba festival since its beginning. The floats have an annual theme, usually an elaboration on "Let's get together and have fun", the avowed mission and vision statement of Moomba. The floats are usually from sister cities (of which Melbourne has six), schools and community groups. They also promote some aspect of the arts, like singing, dancing, or design. Swanston Street is the traditional home of the floats and spine of the city and horse or tractor-draw-floats use the tram tracks. Decorated trams are sometimes also featured.
The first Moomba parade was televised in 1957, the year after the Melbourne 1956 Olympics.
In 2001, the floats came under controversy when some contained representations of nude people.
King of Moomba
Part of the festivities include the crowning of a King of Moomba. Past kings have included Robert Morley (1967), John Farnham (1972)and the first Melbourne born king - Bert Newton (1978). In 1999, the King of Moomba tradition ended.
The official translation is "let's get together and have fun."
I personally think Sammy-Joe should be named the King of Moomba , next year and the tradition should start again .lol,,,
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Sunday again ,,yippee , the day of the Lord , I know God is with us always , but Sunday is extra special for us , its like we can feel his presence .
Well Sunday seemed to go pretty fast and seeing as it was the long weekend this weekend it felt strange to know that we have tomorrow off , Sammy-Joe was still having an awful day with his tummy and also with the fact that he is so unsettled again with his sleep . not sure whats happening there , ?????
Sammy-Joe enjoyed having books read to him tonight as he seemed to finally settle down for the night , what a rough day it has been , it actually has been a full on week and pretty tiring for me , I am pretty exhausted , being Sammy-Joes full time carer and mum isnt as easy as everyone thinks it is , usually I survive on less than three hours sleep a night and find myself thinking of myself last , its pretty much a tough job all round ,, ouch ,it hurts for me to admit that , but its true , its been a hard week .
Cousins Lauren and David came over to play with Sammy-Joe and Visit him for his Birthday , a belated but better late than never birthday , he had fun seeing them and was very happy , 
Big Thank to Grant Fereday of Patons Chocolates for Setting up a Fundraising Flyer and order form for Sammy-Joe , and for donating some lovely chocolates to show ,
Patons Chocolates
17 Rushdale Street Knoxfield 
3180
Australia
www.patons.com.au
email grantf@patons.com.au
Also a Big Thank you to Tupperware for donating 180 dollars worth of Tupperware to be raffled for Sammy-Joe
thank you Gaby Colarossi
From Tupperware Australia
www.tupperware.com.au
21 Brenock Park Drive FerntreeGully
1800805396
Also a BIG THANK YOU to Jill Curnow from Ashdene for all the products that you sent us so we can sell them as a fundraiser for Sammy-Joe
Ashdene Manufacturing PTY LTD
217 Colchester Rd Kilsyth VIC 3137
1300 786 844
ashdene@ashdene.com.au
www.ashdene.com.au
A big thank you to Larisa Alexander for the 36 cartons of products she has kindly donated to us to help raise money for Sammy-Joe , thank you so much for your enormous generosity
Larisa Alexander
Australian Cosmeceuticals
Suite 1a, level 2, 802 Pacific Hwy
Gordon NSW 2072
Sydney Australia
www.trishave.com.au
Tel: 61 2 9418 1115
Fax: 61 2 9418 1997
Email: larisa@trishave.com.au
thank you to Doug and Angela for their kind donation of the M.A.D. maths Rulers
www.madmaths.biz
Also thank to Doug and Louise for their kind donation of Crystal Salt Care
Crystal Salt health Company
www.saltcare.com.au
Also a BIG Thank you to Gerry Amena
Amenas Health Centre
306Hermans Road Gunalda
phone 07 54846555
for his kind donation of products that are helping Sammy-Joe to heal , the seaminerals www.seaminerals.com.au
A big Thank you to
Roslyn Polity lo
and Director Mr Les Dynes for their kind donation of Colloidal Silver SAFE PRODUCTS
health@safe.com.au
Sustainable Agriculture and Food Enterprises PTY LTD
56 Junction rd Burleigh Junction QLD 4220
07 55934566
I want to say a Big Thank you to Collin and his family for all the help with products he has kindly offered us for fundraising
for Sammy-Joe
from the Branding Factory
call 1300 663 150 www.brandingfactory.com.au
email Collin
info@thebradningfactory.com.au
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The beginning of the long weekend for us ,Christian has a day off school and is resting , Sammy-Joe seems calmer now after a week of tantrums and sore stomach , sore ear and everything irritating him , he is now calm , Thank goodness and thank you to everyone that has been praying for him , I think the prayers are reaching him .
Thursday was a hard day for Sammy-Joe , we had people popping in and out all day , and he was a little confused about it all , but otherwise a little calmer than the other days , he wanted to rearrange his room all day and just kept moving in and out of my room to his , the house is like a tornedo hit it , so tomorrow I will be spending most of the day cleaning up , he wanted to wear a woollen jumper because he felt cold and went around the house in my pink jumper .
I will add photos to here soon .
hope you are enjoying the graphics , I was trying to make the webpage as happy as possible
Wednesday 7th of March 2007
Sammy=Joe spent most of the day asleep today , he wasnt feeling too well , a stomache bug has hit our family lately and so he was pretty drained today , when he was awake , he just spent it dressing and undressing again , trying to workout what to wear , he is trying to find his identity and so he trys eveyones clothes on and mixes and matches up his clothes alot .
I had the pleasure today of meeting two wonderful people , one from Patons Chocolates and the other from Tupperware , their generosity , kindness and care towards Sammy-Joe is so wonderful , I will talk about them more tomorrow and the ideas they have to help with fundraising .
Tosay I have also realised that people all across the globe care for Sammy.care so much ,he recieved another 20 birthday cards from all over the world ,he also received a dvd from Dabbles and doodles ,that played Happy Birthday to him , it was so wonderful , he loved it !! , anyway I am hoping as the week progresses so will his health , and hopefully there will be an improve in his health and his behaviour .
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to everyone that has helped me with this situation I am forever grateful to you all
I hope Wednesday is a better day for us 
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Tuesday the 6th of March2007
Today was not a good day at all , Sammy-Joe was all over the place with his behaviour and he was lashing out at all of us , was very upset , kept changing his mind and his clothes , had the runs pretty bad and complained continiously about everything , needless to say he wanted hugs , but then didnt want them ,he wanted kisses then told us to go away , leaving us sad and upset and even in tears , not sure why , we all bothered to get out of bed today , it was a shocking day ,, something I want to forget .
Maria
Sammy-Joes New hat on Christie , thank you Suzie !!!
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Hello and welcome to my Tuesday , today I am going to talk to you about Sammy-Joe s behaviour , its been all over the place the last couple of days so I truelly need prayers for him , he is confused and a litttle agitated about people doing things in his house , his autism has flared up and his behaviour is repe tative and a little frustrated , he doesnt tolerate much change at the moment , although he is still quite cute , he is enjoying all of his new hats and dress ups , I am hoping this mood will pass soon.
Maria
ps I would like to say a big thank you to everyone that sent him cards for his birthday , he has added them to his postcard selection , I will try and convince him to have a photo taken with all of his cards and postcards so you can see how many he has .
Thank you to everyone that takes the time to sign the guestbook , he is sitting on top of me ,,geeesh I am squashed , cos he isnt exactly a toddler any more , he loves all the graphics , thank you to you all !!!and MWWWWWWWAAAAAAAAAAAAAAAAAAAAAA
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a big kiss from Sammy-Joe 
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Its Sunday and so far all is peaceful with Sammy-Joe , not sure what happened to him in these last few days , his behaviour has been all over the place , he hasnt been well and has been upset and irritable all few days , hopefully it is passing what ever he has been going through , he is now asleep again and its 9.52 am , I am hoping and praying for a peaceful Sunday 
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And Thank you to everyone that has written to us , emailed us and sent gifts for Sammy-Joe , we really truelly appreciate it and we are very grateful to you all , without all your support we would find it difficult to get through our days , our very hard days .
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3rd of March BasketBall Grandfinal for Killerbees 1
Well they played a good game but unfortunately they lost , the boys played hard , but Gladstone Park won by a long shot , well it doesnt help because some of the boys from the other team are state players , but I think our boys did really well to play up against them and they kept up with them well .
Here is the photo of the boys , Christian is number 50 and is pretty proud of his trophy even thou its a Runner up Trophy
I am pretty proud of him , he has had a few good coaches so far and has learnt something different from each of them 
And Again
Take 2 
Happy Birthday Sammy-Joe we love you 2nd of March 2007
Sammy-Joes Birthday wasnt the best day Sammy-Joes ever had , he was sick and wanted to vomit he had a sore stomach and a low grade fever so we brought the party to him , here are some photos , he screamed a lot and cried a lot , he wasnt happy at all .
Here are some photos , hope you enjoy them , some of my friends popped in and said hello also , but Sammy-Joe wasnt a happy chappy , I hope he feels better today , usually we celebrate for a whole week anyway ,,lol,, 
Sammy-Joe so far has spent the morning thinking that its not his birthday , he isnt feeling too well as he is quite naseaus today , but I think by tonight he should be ok ..
He woke up at 4 am and has been watching videos all morning , he watched Crocodile Hunter and the Wiggles and then he watched Barney s Great Adventure , he said he wishes he could go to Australia Zoo one weekend and play with Bindy and all the Animals , he is so funny , he said ""Steve come play with me "" , Today once Christie Arrives I will give him his present and then film a little of his day , I have to try and work out how to add it to the webpage , I know somehow there is a way , but I am unsure of how , He has a 101 dalmation Birthday cake and he is excited about that also , I will try and post some photos by tomorrow , this way you can all share in his Birthday celebrations .
Now I have to go and blow upsome balloons .
I wish the backyard was covered in shade cloth so he could spend some time outside today , but its going to be too hot and too deadly , we need the UV protective shade cloth , to cover a good part of the backyard , that will be our next mission , I am still hoping that Backyard Blitz would do a story on Sammy-joe and fix up the backyard for him , but I havent heard anything from them , its disappointing we have had so many letters from people saying that they have written to them on Sammy=joes behalf , its sad that we cannot live his dream of having his backyard done up to suit him , his medical need is enormous and recquires a great deal of money so usually the backyard takes a back ward step in priority , to survive is more important , but I know that he would love to spend some time outside , anyway ,I am not going to ponder on what ifs?? , I am just going to try and enjoy every moment of today with Sammy-Joe , tomorrow is Christians Grandfinal match with his basketball team and he is dedicating it to his brother Sammy-Joe , how gorgeous is Christian , he is amazing .
Sammy-Joe calls him his basketball super dooper brother , gorgeous .
happy Birthday Sammy-Joe , we are so proud of you ,, in this photo you were just 4 years old and now you are 18 ,, wow , you have beaten the odds and I know that you will continue to shine 
we love you 
Wednesday 28th of Feb 2007
its Sammy-Joes birthday week and life is a little crazy right now , life just seems to get harder for us instead of easier , it doesnt seem fair that parents and families with children with an illness / additional needs have all the extra worries to have to deal with , but I guess that is part and parcel if it all , When I reflect on the past 18 years with all the dramas , difficulties and joys , tears ,and many many kisses and hugs from Sammy-Joe ,,, I would do it all again tenfold and in a heartbeat as long as I have my precious Sammy-Joe with us , and as long as we are together as a family .
To Ponder on what the future holds for Sammy-Joe and for our family is something I have learned not to do , but then life comes up and bites you in the bottom and tries to make you think about it over and over again .
I have decided this week I am not going to let other peoples judgments , sarcasm , critism and opinions get to me , I am going to just enjoy every single moment with Sammy-Joe , Christian and Joe and all my good friends , family and loved ones that often take the time to care for us and love us ,
here are some special photos below with Sammy-Joe having fun with Christie and Christian , Nick , Daniel and Beth , Daniel came over last night and it was the best for Sammy-Joe , he hasnt seen him for a long time and he truelly truelly missed him and had so much fun with him ,
Dressing up is something Sammy-Joe loves to do , he wears all sorts of costumes all around the house
he even encouraged Daniel to wear a wig , this photo is so funny 
i love these photos , Happy Birthday precious boy , you are an angel on earth and make life joyous with your smile and love , the hardship and the hard work seems endless but the rewards of having you are enormous and joyous , I cannot ever imagine my life without the ZANY YOU IN IT , we love you 
Christie and Sammy-Joe love each other so oooo much , she is a fantastic Carer and friend .
Christian and Nick Jumping on the trampoline in the evening , while Sammy-Joe watches on , he loved watching them and laughed and laughed so much 
To truelly Understand Disability is to live it every day , to truelly love someone with a disability is life changing and rewarding in every little step that they take , its an experience that someone will never forget , reach out this week to someone that has an illness
Monday the 26th of Feb 2007
Sammy-Joe is so huggable , he has been asking for so many hugs and kisses lately , he is pretty aware that its his birthday this week and so he is waiting patiently for the day to arrive , but still getting anxious , today his behaviour was quite extreme , he was shouting and screaming alot and kept saying he wasnt well , he was also complaining of a sore stomach and sore ear , he wanted Nonna a lot and kept asking for her , he wasnt settling down at all , Christie arrived and he was asleep in my bed , he was tired of waiting all morning and it didnt matter how many times I told him the time she was coming , he didnt understand , I even showed him on the clock , but it was that type of day , he wasnt comprehending anything I was saying , he wanted to just do and understand what he could , he wasnt having a good morning at all ,so I was hoping that once he woke from his morning sleep his behaviour would be better , judging on the amount of light exposure he has had in the last few days , I shouldnt except his behaviour to be any better than what we are getting right now .
, when he woke from his sleep ,he was quite excited to see Christie and I tried to set up the Tv and Video/ dvd , in my room , it took me a long time to work that one out , but once it was all set up , Sammy-Joe s excited face was all worth the effort , he was so excited to have it working and was happy that he could watch TV , bedtime stories and songs on the new screen.
Pretty much the rest of the day , he kept complaining about wanting to dress up , I am really going to have to get some costumes together for him , because he loves dressing up in sorts of things .
I will try and get some new photos up soon , this week I am going to be pretty busy trying to organise Home schooling , we still havent had any success with finding out more from the school , so I feel a whole term has really been wasted , Sammy- Joe is due to have surgery on the 21 st of March , so I think its probably best if we just concentrate on the recovery , he loves reading books so I believe we will spend a lot of time reading , I also wanted to take him to the Library one night , got to find out the hours when its open .
Ok well , I will try and update as soon as I can ,, wow ,Christian is so excited about the Grand Final on Saturday with his Basketball team , I will let you know how it all goes .
Maria
Sunday Feb 25th 2007
Christian had a good game with his Killer Bees team on Saturday , they are now through to the Grand Final on Saturday , how exciting !!! He rolled his ankle in this last game , but he feels he should be ok to play on Friday and Saturday , Friday is Sammy-Joes Birthday , but Christian still wants to play basketball .So someone from his team will pick him up .I have to try and get him some new basketball shoes also ,, something I am going to have to do after Sammy-Joes birthday as I am short on money this month .
well its Sammy-Joes birthday week , he is very excited indeed , he has been so happy all weekend , he has been dressing up in costumes , wigs and just having all sorts of fun.
Maria
Friday, February 23, 2007
Christians basketball team had a good match tonight the boys all played well and they won , it was good to see everyone so happy , the team is a good team .
Sammy-Joe had a good night also , the carer was here and so was my mum and Simone and Heidi , all seemed peacerful in the Liistro household ,, I really dont have much to update , except all seems to be getting better with the Melatonin , Sammy-Joe has been falling alseep around midnight and then waking around 6 am , which I guess is better than all those sleepless night s , I do with he would fall asleep a little earlier .
I will try and update tomorrow , but basically all seems a little calmer for us right now , it could be the calm befire the storm thou.
Maria
thursday 22nd of Feb2007
here are some more photos , Sammy-Joe received another parcel today and it was for his Birthday ,but of course he couldnt wait , thank you Jan for sending such great gifts , he got some baby toy animals . some colouring books and sticker books , some paperHappy Birthday plates , streamers and napkins , and he also got some more great hats , thank you thank you to Hugs and Hope 
also I finally got some good headshots of Christian ,one of these photos will probably go on his trophy for this season .
isnt he handsome 
Wednesday the 21 st of Feb 2007
My Friend Rosa has organised a fundraiser with all her alternative healing friends , I am so happy that these wonderful people have decided to help raise much needed funds for Sammy-Joe , below is their flyer , please come along if you can
Open Your Heart Day for Sammy-Joe
Sunday 18th March 2007
10am – 3pm
13 Lawrence Street, Glenroy 3046
$15.00 entry
Kinesiology, yoga, reflexology, massage, card readings, reiki and more – come and experience a day of indulgence.
Sammy-Joe has Trichothiodystrophy (TTD), a rare life threatening DNA repair disorder, which means Sammy-Joe’s cells are constantly breaking down due to UV exposure. They cannot be repaired and so they die off and mutate causing all sorts of problems to his health.
Bright lights, sunlight, glare and fluorescent lights bombard his central nervous system and cause him all sorts of physical pain – headaches, blistering, fatigue and difficulty in visual focus, to name only a few of Sammy-Jo’s everyday affliction. There is no cure for Sammy-Joe’s illness.
Please help us raise much needed funds for Sammy-Joe and assist us in his race for survival and to maintain a comfortable quality of life.
For more information about Sammy-Joe and TTD visit
www.caringbridge.org/ok/sammyjoe
Please call Eleonora on 9306 5464 for further information.
BYO lunch / tea and coffee provi
Tuesday the 20th of Feb 2007
Sammy-Joe got a special surprise today in the Post , he received a parcel full of Christmas Present s from his Hug s and Hope Christmas Elves , it was so unexpected because seeing aa Christmas is over , but it was so joyful after spending the morning in Hospital , he was so thrilled to receive the package , Thank you KATE AND CHIS
for the lovely gifts you have sent for Sammy-Joe , he was so happy and wanted to wear his basketball pyjammas straight away ,, he even went to find Christians old basketball shoes because he wanted to wear them , he loved everything ,,and sent and blew kisses to the camera ,,GO CHICAGO BULLS ,
Christian was so excited for Sammy-Joe as Dean Wallace is Christians favorite player and seeing as Michael Jordan also was with them for a while , he stated that ""wouldnt it be cool if Sammy-Joe got something from the players, "" ,, I think Christian would be over the moon , Sammy-Joe is just wrapped that he has his own Jersey now and he doesnt have to fight for his brothers ,,lol,, I told him not to get over excited , this is so cool and exciting for Sammy-Joe in itself , 
Sammy-Joe also saw one of his favorite doctors today ,, he calls him ""Doctor Peter "" from the Royal Childrens Hospital , he received 1000 units of Vitamin D today ,, he was pretty happy , and was excited about going home .
Later today we received another package from our good friend Trish , she sent Sammy-Joe a special Angel Bear , what A PERFECT DAY its been for Sammy-Joe , he is now going off to sleep in his basketball pj s and also holding his little bear , he said ""LOVE MY PRESENTS << LOVE TRISH <<>LOVE KATE <
thank you thank you
Maria
Ps Thank you to Hugs and Hope.
Saturday the 17th of Feb 2006
Sammy-Joe was such a star yesterday at the hospital , he had a blood test with Andy his usual , fantastic pathologist , and blood taker , Andy is so great with him , it makes life so much easier for us because Sammy-Joe knows him and trusts him and will just roll up his sleave for him and say ""DO IT < JUST TAKE IT "" and then he starts counting , he even had it done this time with no Angel Cream , I was so worried he was going to play up , but Sammy-Joe didnt , he was amazing !!
We also went to see the Gastro doc , and he said that Sammy-Joes button needs to be replaced so he will go in for Day surgery again around the end of March , and then we went to see the sleep clinic people , they suggested that Sammy-Joe start a natural hormone called Melatonin , which is a thing that we normally get from the sun , our brain naturally releases it and this is what helps us to sleep , but because Sammy-Joe doesnt get any sun , this is why his sleeping pattern is all over the place , this is going to be expensive because it isnt available here over the counter , like it is in the USA , they said they will organise for Sammy-Joe to have some , so we are hoping to get it by next week .
Now I WISH I was back in the USA so I could get this for him , its so complicated here , I cant understand why its so difficult at times and so expensive for our children to get what they really need .
Parents that have sick children constantly worry about whether their children will survive through their illness , but we also have to worry financially and whether we will be able to continue to support our children through their survival , its just so wrong isnt it ,, anyway , I know that somehow God will help us through this difficult time , and I am so grateful for all the help I have recieved so far , I am grateful that there are generous loving and caring people all over the world that have thought of us ,, thank you thank you thank you , without your support we would not be here today .
Yesterday was so good , we took Brian along with us to the hospital , it really helps to have the carers come with me , because this way I can speak to the doctors and they can entertain Sammy-Joe , and also its always good to have some company , its pretty much a tiring day whenever we go to the hospital , and by the time you get through all the appointments , you just end up dragging yourself , plus Sammy-Joe all over the place because you get pretty exhausted , what makes it easier is if Sammy-Joe is happy , and yesterday he was happy , he wasnt really the calmest because i think he was pretty anxious to begin with , but then he calmed down by the end of it.
When we got home he wanted to tell my mum all about it and it was so funny when he was explaining his day to her , we just had to laugh ,, he just kept saying ""AND THEN I HAD TO HAVE ANOTHER BLOOD TEST << GEESH TOO MUCH BLOOD << SICK OF IT << SICK OF COUNTING << TOO MANY TIMES << I AM A BRAVE BOY << I AM A STRONG BOY""
he was so funny .
anyway here are some photos I wanted to share with you all
please have a great weekend .
love and hugs
Maria
PS Another wonderful thank you note , I want to say thank you to Hugs and Hopes for everything that they are doing for Sammy-Joe , a special thank you to Granny Smiles , thank you to Angel Jen from Sunshine on Eagle wings group and thank you to Keiki Cards for all the cards you are sending Sammy-Joe and also thank you to Angels For Hope for sending the beautiful Angel to Sammy-Joe , he just loves it and has it near his bed at night to protect him
http://www.angelsforhope.org
Also to everyone in the Prayerbears and also to Angel-Wings , all the beautiful people in these groups , that pray for Sammy-Joe and send him cards Postcards and stickers , he loves them all .
Also thanks to Suzie for thinking of Sammy-Joe also , and about the hats and prayers , and to Jeri , he loves the postcard of the Croc and Steve , he loves it !! , last night he asked me for it in his sleep ,, I had read it to him when it arrived , and at first I thought he didnt take much notice , but then at the hospital he asked me for it ,and also when he was asleep , he called out for it in his sleep , so thank you thank you to everyone that thinks about Sammy-Joe and cares for him .
he sends hugs and kisses to you all 
Sammy-Joe loves to sit on the swing and watch Roxy our dog , he loves to play with him 
Sammy-Joe is always smiling , he loves his toys and his room 
Sammy-Joe loved to dress up and he loves this wig ,he calls it his GUY SEBASTIAN Wig 
Sammy- joe is always proud of his small achievements , to us they are huge we are proud of him also 
Christian often loves to entertain Sammy-Joe by shooting hoops for him , he averages around 16 points a game , he says he plays for his brother .
He dedicates the games to him .
Our carer Brian , washed our dog Roxy for us while Sammy-Joe and I danced in the rain , it was so much fun , we then helped Brian , but I think Brian got a kick out of watching us do the rain dance .
Brian and Murial are Sammy-Joes carers and friends , he loved being out in the thunderstorm with them ,, I think the thunder and lightening werent enough to keep Sammy-Joe entertained , he wanted all the animals out also .
Sammy-Joe loves the baby turtle in our garden
Christian had a good game last night , although they lost against Keilor , he actually scored 18 points for his team , we are very proud of him , he said he plays for Sammy-Joe , every goal he gets in is how many years he wants Sammy-Joe to live longer ,, he breaks my heart ,, God love him , he is such a good brother , I am so happy and I feel blessed to have both my children
I am so grateful for all the little things , because to us they are precious and huge , thank you to everyone for all the prayers you have sent our way and up to heaven for us ,, we love you
Maria
How Funny yesterday afternoon was , Sammy-Joe and I decided to do a rain dance under the verandah at about 5 ,30 pm and guess what , ???? it started pouring rain , how beautiful is the universe that its timing was precise for Sammy-Joe , you shouldve seen the joy on his face , and then our garden turtles came out and Sammy-Joe was so happy to see them , he followed them around in the rain , he was so happy that it was dark gloomy and thunder and lightning didnt even scare him , our carer Brian washed our dog Roxy for us while Sammy-Joe watched with such joy , it was so wonderful to see him all happy ,I will add the photos tonight , for now we are off to the hospital .
Thank you for all the kind messages and also for all the valentines day cards Sammy-Joe received , he was so happy he is being thought of.
love and hugs
maria
ps how ironic , we are going to sleep clinic today and last night he actually slept all night long , also we are going to see the bard button doctor and stomal therapist and his infection has finally healed up ,, I kept teaching Sammy-Joe everyday to say ,, ""Thank you for my healing "" and I also gave him a hand held mirror and everyday I am teaching him to say ""I am well , I am beautiful ,,I am healthy ,, I am Gods perfect Child '' AND HE LOVES DOING IT EVERYDAY ,, ITS SO GOOD , i DONT KNOW HOW AND WHY ITS WORKING BUT IT SEEMS TO HELPING HIM .
LOVE YOU ALL
MARIA
ps I was so excited I won my first prize in a magazine called Real Living ,the prize was a t the value of 23 dollars worth of products , but I am so happy and grateful to have won , here is the photo
happy Valentines day
happy Valentines Day Everyone , Sammy-Joe loves all the cards , stickers and toys he has received , thank you thank you so much , I am so happy and grateful to you all .
He has been feeling a lot better lately , his bard button is clearer and so far we have had two ventures to nonnas house , breakfast at grandmas is much sweeter , he loves dropping off Christian to school and he tells us many jokes on the way , some of them dont make sense , but we laugh at them because its just so funny and interesting to listen to him , he is being a big chatter box lately , he is so amazing and is such a joy , keeping us all on our toes , he also has been feeling like he needs to dress up , wearing wigs and and all sorts of hats , he is so funny
Tuesday the 13 th of Feb 2007
Sorry for the lack of updates , i havent had much time on the computer lately , Sammy-Joe hasnt been too well lately and yesterday Christie and I took Sammy-Joe to his doctor , she gave him more antibiotics and also some new cream for his button , as its infected again ,, I am so tired and sorry for Sammy-Joe , he has been going through so much lately and although he continues to stay positive , declaring in a loud voice ""I AM WELL"" I know rhat he is struggling with this bard button , he tries so hard to avoid going to the doctors , but unfornately we needed to go , and also we will be heading to the hospital on Friday to see the sleep therapy people and also his Gastro doctor and the stomal therapist , so many hospital appointments , we also have to get a blood test also ,
Maria
Thursday the 8th of Feb 10.27 am
Sammy-Joe finally went to sleep this morning at 4, 30 am and then woke up at 8 am , after Christian set off to school with his nonno , Sammy-Joe decided he wanted to venture outside in the back yard , the UV was still on zero at this stage so he felt very comfortable indeed , around 9 am he decided he wanted to have breakfast as Nonna s house , something we used to do in the past , since his regression he hasnt felt well enough to want to do this so its been almost a year since this has happened .
He was so happy to sit in the car while we drove around to my mums , my mum and dad were equally surprised to see us turn up at their doorstep , we were all pretty impressed with this , to some it may be something minor , but to us its a big deal , he hasnt wanted to do this for a long time , he even asked for Eggs , which I was a little worried to give him , but he managed them slowly , he was very proud of himself . I opted for a strong black italian coffee as I am still functioning on less than 3 hours sleep a day .I was so excited about this morning I just had to write it in my journal , its been such a hard long trott for us lately , and I was hoping that soon Sammy-Joe would want to stay awake more during the day , I believe once the cooler weather sets in he will start to do this . Summer is so hard for us .To ponder on what the future holds for us and for us as a family is something I have learnt not to do , I have decided to live each day precious in the moment , and todays events will be one of those precious moments I will remember for a long time , my parents joyful faces as they opened the door to Sammy-Joe standing there , was so wonderful and so memorable , their laughter and surprise when he wanted to eat eggs , these are precious times for us and I really dont think anyone can truelly understand how wonderful it is to see Sammy-Joe have the slightest improve , its something so rewarding words cannot even describe the feeling .
yesterday Sammy-Joe counted to 20 , boy were we excited about that also , something that he hasnt done also for the longest time , he has changed in many ways in the last few weeks , sometimes I am frightened about this because in the past he has always shone brighter before some bout of long illness , please pray that the positives keep happening , God knows we need them to.
As Sammy-Joe approaches adulthood , our concerns grow , we worry more about the shortened lifespan , we worry more about time , something he is also doing as he is starting to collect clocks , he keeps saying he needs more time , I am not too sure why , but its something that has been happening for the last two weeks , ""More time ,, more clocks "" he says , especially around 3 am each morning .
How robbed my beautiful boy has been of basic human functions and of a human being , how robbed he has been many times with his life , I have learnt to appreciate the small things , the small achievements seem huge to me , and I have also learnt to appreciate and notice small kindnesses , compassionate people , my life is rich with experiences , I rejoice everyday in all the tiny steps , in loving faithful friends , in kindness of strangers , in time spent with Sammy-Joe , in those moments of solitude , when we just sit and hold each other , when he just wants to be held and tells me time and time again ''I love you mummy , I love you with the whole wide world "" these are the moments I rejoice in , these are the moments that will live in my heart forever .
the moments when my son Christian says to me ""Mum No one can make me laugh more , cry more , fight more and love more than Sammy-Joe can ."" these are the moments I will cherish forever .
Today my pain sits outwardly , today my pain is sitting on my sleeve and so is my heart .
Maria
Wednesday, February 2 am
Hello , things are pretty much the same at the moment , Sammy-Joe is still spending every night , or rather every morning from midnight onwards awake and stays awake all morning until 11 am and then falls asleep , I am pretty exhausted , so I may not be able to update as often because I am spending most of the time I can get trying to catch up on much needed sleep , which at times is quite difficult , please keep praying as we need the prayers for sleep .
Sammy-joe has met his new carer , she is lovely lady and seems already quite fond of Sammy-Joe , so fingers crossed that all will go well and Sammy-Joe will remain quite well behaved for her ,
maria
Monday the 5th of Feb 2007
Just wanted to say Happy Birthday to Carol for Saturday and Happy Birthday to Sam for Sunday
Hope the day was beautiful for you.
Still havent had much sleep as Sammy-Joe still continues to sleep most of the day and is up all night long into the early hours of the morning , I am still going on less than three hours of sleep a day .
I NEED prayers , please pray that Sammy-Joe soon starts to go back to sleeping at night , I know the summer does this to him , but I think this year its gotten worse .
Well i wont be online for a few days as our computer is getting serviced and so please do remember to visit all of our friends and pray for them and also pray for Uncle Charlie and Uncle Nick , both going through cancer treatment at the moment .
please sign our guestbook this way I know you have been here , love and hugs across the Globe , reaching you as light through your heart , love and hugs
ps had the locum doctor come out to visit Sammy-Joe as he is unwell with a temp and an infection in his bard button again , he also has a sore throut , so he is on antibiotics again and also some cream for his button .
he stayed up all night long , so I BATHED HIM AT 2 AM this morning and then he watched some shows on Tv .
he is so funny , I love his gorgeous smile ....
Maria
Its 2.31 am and we are up again , Sammy-Joe and I are so tired , but somehow we cannot get any sleep , well basically he cant and I need to stay up to look after him, oh well , the circles under my eyes are getting worse , and Christian starts school today so I have to make sure I am up also for him at 8 am .
We took some photos tonight to show you our tired eyes , he insisted we put this one on me on , he wants to see me on his webpage ,, oh well I guess once winter comes we will get some sleep we hope ..fingerscrossed for us.xxxxx
oj my gosh , my eircles under my eyes are so dark and Sammy-Joe looks so pale .
I helped Sammy-Joe take this one , I think he did a good job .
We both look pretty tired .
I just want to crawl into bed and sleep , but thats impossible , I am not sure whether I am going to get some sleep today at all .
Maria
Wednesday Jan 31 st
Sammy-Joe loves to sing "" Give me a home among the gum trees , with lots of plum trees , a sheep or two and a kangeroo, a clothesline out the back , verandah out the front and OLD ROCKING CHAIR """
He has been spending a lot of time lately staying a wake all night long , being awake from 8,30 pm to 5.30 am and then sleeping until 8.30 am and waking time until about 1.30 pm in the afternoon and then falling asleep again until 8.30 pm , its driving me batty , I am only getting about two to three hours sleep a day , so functioning on little sleep is killing me , but of course I know it isnt anything I can do until summer is gone , because Sammy-Joe feels better at night time and so its going to be a long couple of months , I am going to try and get some sleep while Christies here today because otherwise I think I am going to burn myself out .
sitting under the big gum tree at night time , summers nights here are cool , he loves to wear his big coat to keep warm .
Sammy-Joe sits on nonna on the Rocking chair
Christians new haircut .
he looks gorgeous and he seems to be enjoying it , Christian starts school on Friday , yesterday Harley came over for the day , he hasnt seen him for a whole four weeks so it was good for them to catch up with eachother , they will be friends for life , its so good to see them have so much fun whenever they are together .
thank you to everyone that has signed the guestbook lately and thank you for taking the time to read Sammy-Joes journal , dont forget to sign , we read the entries every day and Sammy-Joe gets a kick out of knowing that he has friends all over the world .
thank you again , we are very grateful to you all .
love and hugs
Maria 
A tired Sammy-Joe 
Taking the toys for a walk around the house .
Friday the 26th Australia Day ,
its Australia Day and we are proud to be Australian .
Its 3 am here and Sammy-Joe is awake , he is watching all of his home movies from when he was a baby , he is sitting here quietly laughing to himself .
Its Australia Day and while the rest of the household is asleep we are wide awake and beginning our day , this seems to be Norm lately for us and I am somehow trying to get used to living on only three hours sleep a night , but I am starting to feel the strain and am feeling rather tired .
Anyway I wanted to add some graphics that represent Australia and everything that Sammy-Joe loves about it .
he loves Koala s and got to hold one and feed one when he was 13 , he has never forgotten it and I have posted that photo , it is in journal history , he also loves ,echnidas ,
he loves the Australian flag , and he loves the songs , we are Australian and Waltzing maltilda , he especially loves the Wiggles and he loves the Crocodile Hunter .
longneck turtles , wombats and possums ,
he loves the story called possum Magic , he loves vegemite sandwhichs , the aussie meat pies , the aussie burger.
He loves kangaroos
and platypus , he loves all the australian animals , he even likes the Magpies
that come to our garden , insisting that we leave food for them so that he can watch them through the window in the early hours of the morning .
He is definately nocturnal and does most of his sleeping in the day time , just like his bush buddies . he loves the possums and he loves thebook called Possum Magic he loves "Hush "
POSSUMS
There are many kinds of possums. But I think Hush is a brush-tail possum. All brush-tail possums have long bushy tails and are grey like Hush and Grandma Poss. Possums live in lots of different parts of Australia and New Guinea and some in New Zealand now.
They mainly live in hollow treees but now many possums live in house roofs. Possums love to eat buds, leaves and lots of fruit. They mainly feed at night.
When possums are born they are less than 1cm long. They stay in their mother's pouch and drink their mother's milk until they are 4 months old. By the time possums are 5 months old they are old enough to find their own food. When they are 1 year old they are old enough to have a baby. Most baby possums are born in spring but some are born in autumn. A mother possum carries her babies on her back for about three months. If the mother possum wants a rest she puts the babies in a nest and sleeps with her mate in another nest.
The nests are usually made with leaves and twigs for the outside and to make the inside soft some soft moss is used with bark. Brush-tail possums have better fur than the similar looking ring-tails do. Brush-tails have one thumb on their feet but ring-tails have two thumbs like koalas.
Another kind of possum is the honey possum. Honey possums feed on flowers and also eat insects. They don't make their nests out of sticks and leaves they make it out of grass.
The cuscus is another big possum that lives in New Guinea and the north parts of Australia. It mostly eats leaves but may eat birds or other small animals.
Many possums are dying out but brush-tails have learnt to live with people!
he loves Nemo and he loves watching the movie over and over again .
Once a jolly swagman camped by a billabong,
Under the shade of a coolibah tree,
And he sang as he watched and waited 'til his billy boiled
"Who'll come a-Waltzing Matilda, with me?"
Waltzing Matilda, Waltzing Matilda
Who'll come a-Waltzing Matilda, with me
And he sang as he watched and waited 'til his billy boiled
"Who'll come a-Waltzing Matilda, with me?"
Along came a jumbuck to drink from the billabong,
Up jumped the swagman and grabbed him with glee,
And he sang as he stowed that jumbuck in his tucker bag,
"You'll come a-Waltzing Matilda, with me".
Waltzing Matilda, Waltzing Matilda
Who'll come a-Waltzing Matilda, with me
And he sang as he stowed that jumbuck in his tucker bag,
"You'll come a-Waltzing Matilda, with me?".
Up rode the squatter, mounted on his thoroughbred,
Down came the troopers, one, two, three,
"Where's that jolly jumbuck you've got in your tucker bag?"
"You'll come a-Waltzing Matilda, with me".
Waltzing Matilda, Waltzing Matilda
Who'll come a-Waltzing Matilda, with me
"Where's that jolly jumbuck you've got in your tucker bag?",
"You'll come a-Waltzing Matilda, with me?".
Up jumped the swagman, leapt into the billabong,
"You'll never catch me alive," said he,
And his ghost may be heard as you pass by the billabong,
"Who'll come a-Waltzing Matilda, with me".
Waltzing Matilda, Waltzing Matilda
Who'll come a-Waltzing Matilda, with me
And his ghost may be heard as you pass by the billabong,
"Who'll come a-Waltzing Matilda, with me?"
wish Christian Luck he has a basketball tournament all weekend , Joe is taking him and I will be taking him tomorrow to one of his games , its unfortunate that I cannot go to all the games because of lack of Carers , its actually quite frustrating to me to know that I have carer time but the agency hasnt provided me with enougth carers to fill the shifts and also to have on occassions such as these , my case manager and I , we are looking into things and hopefully by the end of Feb we will start a fresh with a new idea and new plan on this situation .
Well everyone have a wonderful Australia Day weekend I will try and post some photos soon . Sammy-Joe is such a nocturnal person lately , its killing me , I need some sleep !!!
bye for now ,ove to you all and thank you for visiting us .
Maria
monday 22nd of Jan 2007
Sammy-Joe has been up since 3 am this morning , he has played for about an hour on the computer and now he is in his room playing with his toys , he has had breakfast , his peg feed and also mashed bananna , he said he feels sick still , but has only a low grade fever , we hope its just something in passing ,, anyway I just had to share these photos with you all , I thought they were great !!
Who is the biggest and cutest toy??
the King of the toys ,,,,,Sammy-Joe 
oh oh ,, they are going for a walk now ,,all over the house 
Saturday and sunday 20th and 21 st of Jan 2007
Sammy-Joe spent most of Saturday fighting a low grade fever , he also complained of sore ears and a sore head , I gave him panadol every four hours and that kept the fever low , he slept most of saturday and sunday , then spending the early hours of the morning up playing some games on the computer , the good news is he is feeling happier to sleep in in his carbed now, which means he doesnt want to spend much time in my bed anymore ,, yippee Joe and I finally get our bed back , after a very long time ,, so hopefully this is another improvement in Sammy-Joe , another step forward , cannot wait for homeschooling to start am very excited about it all .
Christian is a little sad that he has one more week of school holidays left , he went to the Basketball match on Saturday with his dad to watch the Melbourne Tigers , he has been to three games so far on the holidays and also three times to the movies , he has been spending lots of time with Joe lately which is pretty cool because he does spend lots of time with me normally , its pretty good that they have bonded again , usually they were always at each other for something or other , now there is finally some peace between them , too many male hormones I say ,,lol,, my house is full of boys usually , sometimes its all too much !!
Today I am off to pick up Christians school books , then I really have to do something about my sore mouth , I have been having some problems with my teeth , looks like I have to get going to the dentist , no more putting it off because its getting worse now .
please pray for Sammy-Joe also because I am hoping that this low grade fever is not the beginning of another bout of illness for him ,, he needs some kind of a break .
Maria
Friday the 19th our Brooke comes to see us
It was so good to see our beautiful Princess Brooke , Sammy-Joe just adores her and just kept wanting to hug her , she is such an inspiration to many of us and such a breath of fresh air , she is radiant and bright and brings sunshine into our very bleak and dark days , it was so wonderful to catch up with her , here are some photos , Christie our Carer got to meet her as well , Sammy-Joe just got a kick out of Hugging Brooke and even hugged Christie , I was a bit worried he was getting rough , but the girls reassured me he was fine and gentle . Sammy-Joe had pretty much a pretty bad day before all of this so it was wonderful to see him smile and light up once he saw Brooke .
here are some photos
,,also Christian had a wonderful conversation with Brooke , he sure is growing up fast .
there was even Hugs for Christie , he loves and adores her too 
Sammy-Joe hates saying goodbye and found it difficult to let go of his beautiful Princess Brooke 
Friday 19th Of JAN 2007
Sammy-Joes bard button area is infected again , it is red and sore and he has been sleeping his days away for the last couple of days , which means I have had less than six hours sleep in two days as Sammy-Joe is up most of the night , I have to try and get some day sleep , but this too is impossible as Christian is home , and I need to be awake for him , all of his friends have gone away for the break and although he has had offers , he hasnt wanted to leave us for a break , he still enjoys being around us and isnt at the stage of wanting to try and get away from us like most teenagers do these days , I guess this will probably happen in the next few months as he is definately a true teenager .
Sammy-Joe on the other hand has truelly shown us that he is definately a moonchild , sleeps all day and up all night playing , he plays outside hunting for bugs and also looking for the long neck turtles in our garden , he has named them ROCKY AND SHELBY , the other night he also mentioned that he saw a snake , which freaked me right out because last time he actually said that , there really was a Tiger snake in our garden , a momma snake and her baby , pretty scarey stuff !!!especially because they can be deadly if you get bitten , so I have been thinking of calling the Ranger today to see if he can find anything .
THANK GOODNESS ITS RAINING ,,YIPPEEEE!!!
iTS BEEN pouring rain for the last two hours here and I am hoping it will rain all day ,and hopefully tomorrow too , the firefighters need some relief and we also need the water ,, its GDAY Australia week this week , please pray for all of us here in Australia that have been experiencing the drought , we need some more water .
I have been saying lots of Prayers . Last night I watched Bindi and Terri on the Late Night David Letterman show and I was very proud of young Bindi , she is definately holding it all together for her dad , I have been praying for this family for months as it was very sad what happened to Steve.
We need some prayers and some Miracles right now , I have been praying hard to God and the Angels , I hope that God hears our prayers 
Sammy-Joe has been feeling very Nauseas also the last couple of days , I need to call the local doctor to come out and see him again, its been pretty hard for Sammy-Joe lately , but I guess this is all that it is for him and his condition , summer is the worst time for him .
Well I will sign off now .
these latest photos that I am adding are of our cousins Francesca and Michelle Oliva that came out here from Italy , they are lovely people and were very touched by Sammy-Joes situation , I will definately keep them also in my prayers and we will miss them as we are not sure when they will come back to Australia , they enjoyed being here and said they would love to come back again to visit us and they will be praying hard for our family .
thank you to everyone for your prayers ,thoughts , emails and cards , we are grateful for everything you do and every note we recieve. thankyou also for signing the guestbook .
I will try and update tonight as today Brooke will be coming to see us and I want to take some photos of us all .
we love you lots
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Maria 
OUR COUSINS FROM ITALY
Francesca and Michelle Oliva
beautiful people with hearts of Gold , it was a pleasure getting to know them .
My Cousin gettina and Sam
please pray for Sam as he is having to review all his scans for his Non Hodgkins Lymphoma , I have been praying very hard for him , please keep him in your prayers .
My mother in law Pina ,"" Sammy-Joe s nonna Pina "" he loves her very much , she spent some time with him in the evening on sunday playing on the swing while Joe , Christian and my father inlaw Sam and I cleaned the shed out to make room for all the things we took away from the front room , we are getting ready for Sammy-Joes home schooling ,,cant wait for it to start , I am sure Sammy-Joe will enjoy it .
Sammy-Joe loves sitting outside at night on the swing , he loves to know that he can do this at night , he loves exploring in the garden .
Right now its 9 am here and he is fast asleep again , day time seems to be his enemy lately , because its summer , at least in winter he can tolerate some days awake , but even then there are times when the UV is too high because it bounces off the clouds .
I will try and update more later today , take care and thank you again for all the cards , letters ,emails and little gifts you send Sammy-Joe , he loves them !!
Tuesday, January 16, 2007 2:13 PM CST
Please please pray for all the Children in the world that a battling some kind of illness , their days are filled with hospital appointments , doctors , medical bills and many many days in bed .
Please please pray for Sammy-Joe that is having a hard time through these very hot days lately , he has been sleeping for most of the days , but is struggling with his tummy at the moment .
Thank you for visiting us
maria
Sunday, January 7, 2007
Thursday the 11th of Jan 2007
We had a busy couple of days , Joe is on holidays for a week and we decided we would clear out Christians room and put his new king single bed together , Christian has happily given his car bed to Sammy-Joe and also a huge collection of all his toys , Christian said he is too old for toys now ,, isnt he funny , he is only 14 , well he is super dooper brother , he has also given his huge toy chest to Sammy-Joe , and Sammy-Joe filled it up with all of his stuffed toys and then spent the rest of the evening last night playing JACK IN BOX in it and also pretending that he was in a boat , and he used a timber panel from his old bed as an oar , it was so good to see him using his imagination , Christie his carer said it was so cute to see him so excited about the change , cos usually kids with Autism cannot handle the changes , but Sammy-Joe loves collecting things and to him it was like Christmas all over again .
Christian you are a wonderful caring brother , we love you so much sweetie , hope your night in your king single bed was awesome .
Sammy-Joe slept soundly last nigth through the night , he went to bed at midnight and slept til about 6,30 which was fantastic , he fell asleep again at 8 am after his peg feed , so I think the heat is getting to him .
We have had some pretty awful hot days , I have been praying for rain , we have bush fires still out of control and the drought is getting worse .
We have another busy couple of days because we have to try and clear the front room now so that when Home schooling starts there is at least a bit of room in the front to work in , although a seperate room would be ideal , unfortunately we need to win the lottery or something to be able to provide Sammy-Joe with a seperate school room . I have been hoping that somehow God Shows us the way to try and get some help to bulld a seperate room for Sammy-Joe , an indoor playground , something that he can actually work and play in , our house is so small , its frustrating , although I am grateful everyday that we have a roof over our heads .
love and hugs
Maria
""TO THE WORLD YOU MAY BE ONE PERSON ,,, BUT TO ONE PERSON YOU MAY BE THE WORLD ""
We are Sammy-Joes world and he is ours , Christian is ours also , we love both our children .
Sammy-Joe is Christian s world , our world and he is ours , each of us is touched by his Zany character , his temper tantrums , his frustrations, his joys , his funny little antics , everything about Sammy-Joe is special ,, Christian said this to me this morning " special needs doesnt just mean having a disability its also having that special way of looking at life and learning to laugh at yourself ,, which SAMMY-JOE IS A CHAMPION AT ."" and we giggled together about it .
Here are some special photos we want to share with you
Sammy-Joe spends his days playing in his room 
Sammy-Joe Dressed up for Christian and said he was SUPER GLITTER MAN 
our big boy .look how much his grown ,, big difference from this photo taken in America when he was 15 only three years have passed .
Sammy-Joe is super light sensitive these days 
6th of Jan 2007 2 pm
Good afternoon , Sammy-Joe was awake at around 8 am , he went to sleep about 3 am and woke up after five hours which is pretty good for him .
I took some photos of him around 1 am , he played on the computer and he also dressed up . and played an adventure , Sammy-Joe is into costumes and he loves masks and hats , and he loves glittery things , he enjoys imagining , and plays lots of games with his toys , he seems much happier lately .
My handsome Sammy-Joe and he is pretty Zany too ..lol..
My handsome Christian 
5th of Jan 2007
Sammy-Joe slept a whole six hours straight at night time ,what a Miracle !!
I am hoping he will do this again tonight , this way he can stay awake more during the day , he is so funny this morning , he has been playing with a plastic container taking his toys for a ride around the house , he is on Adventure mode again and keeps saying ::""mummy , mummy look I am happy ""
I love seeing him like this , his life is so restricted , he spends his days , especially days like this , its so hot today , we had a very watm night ,, thank goodness for air conditioning . Sammy-Joe has been too frightened to even venture outside at night lately , I think he is trying very hard to stay well , he is frightened if he ventures outside he will get sick again , because he finally feels well ,he is trying to keep it that way .
He is standing right next to me now wanting the computer , so I will sign off now and write more later , take care , thank you for visiting Sammy-Joe.
hugs
Maria
ps Christian says hello also , he is such a great brother !!
4th of Jan 2007 10.11pm
Sammy-Joe has had a good day , he slept most of the night and even had a sleep in the day time ,he has been much happier lately and I am hoping that he will continue to feel better even though the weather is quite warm , thank goodness we have evaporative cooling because I dont think he couldve coped through this heat .
Here are some photos of him that I took today , he played happily in his room and smiled alot today , he seems to be in a better mood now finally that the docs have him on the right antibiotics .
thank you for visiting Sammy-Joe and thank you for all your kind words and messages , thank you also to everyone that takes the time to write to us , we really appreciate all the cards , letters , emails and messages we receive .thank you for your kindness .
A Much Happier Sammy-Joe 
Sammy-Joe plays happily in his room 
my nephew Johnny and me 
Carol with Sammy-Joe 
2nd of Jan 2007 at 10.17 pm
I have placed the matter in the hands of the authorities , because what has happened is a type of fraud , I dont know the person or recognise the email address , this person has obviously hacked into my computer and emailed alot of my friends and this is a crime , I feel that this person obviously needs help I think it is extremely sad that someone could be jealous of this kind of situation and want to put an end to the friendships I have made etc. but I believe the person is not jealous of Sammy-Joe, but is jealous of what I have achieved for Sammy-Joe and is trying to ruin this for him does that make sense? Sammy-Joe is so happy to receive happy mail , his world is always at home doing the same thing over and over again , so receiving parcels , cards , emails with pictures on them is something that keeps him occupied and happy , he loves it when I read him the cards and show him the pictures, so why would someone want to ruin things for him , its so sad . Anyway I must find a way to forgive this person , but I do not forgive the Action , whether this person ,Maybe it's a person who has good intentions although misguided? This person could believe that I honestly needed a break from everything and thought he or she would take matters into their own hands , but they did not receive my consent to do so and they did not consult me and also has pretended to be my friend when I dont even know the person .
Anyway Tomorrow is a new day and I am going to end this page and start fresh and positive because I feel I have dealt with this situation the best way I know how .2007 must begin in a better way for us and I wont allow anyone that would do such a thing ruin the rest of my week , besides I need not waste my energy and time any longer on this matter , I need to take care of my precious boy .
Maria
2nd of Jan 2007
I have had a very sad beginning to 2007 , having someone do such a thing to me is not called for , it has really pointed out to me how unsafe the internet really can be , it is also sickening to think that someone would do something like this without my consent and also to do this to a family that has a child with an illness is not called for , this person certainly needs prayers , help of some kind .
I will get to the bottom of this and when I do I will make sure that everyone knows who it is , because it is so unfair to have this done to us .
Why would someone do something so hurtful to Sammy-Joe .
Maria
Happy IST OF JAN 2007 
My New Year was started with sad news and upsetting news ,, it definately is the year of awareness .
WELL , i WOKE UP WITH A VERY BAD HEADACHE AND WAS WONDERING WHAT WAS THE MATTER WITH ME ,, WELL ONE OF MY GOOD FRIENDS HAS ALERTED ME TO a terrible thing , someone has been emailing my good friends and asking them to back off from me ,, this is so untrue I would never let anyone email on my behalf , and if you have received any emails to this nature , please let me know because I want to get to the bottom of this , I want to know who would do such a thing and write to my friends asking them to give me space when I have never asked them to , I want to know who it is that is trying to corrupt my life and Sammy-Joes life , so PLEASE IF YOU HAVE RECEIVED ANY EMAILS OF THIS NATURE PLEASE PASS THEM ON TO ME BECAUSE I WANT TO KNOW WHO IS TRYING TO KEEP YOU ALL FROM WRITING TO ME , WHO WOULD STOOP SO LOW AS TO TRY AND TAKE MY EMAIL FRIENDS OFF ME BECAUSE OF JEOLOUSY ,WHO WOULD DO THAT?? THIS PERSON OBVIOUSLY NEEDS PRAYERS BECAUSE IF THEY WOULD DO SUCH A THING TO ME WHAT ELSE ARE THEY CAPABLE OF DOING , PLEASE EMAIL ME AND LET ME KNOW IF YOU HAVE RECEIVED ANY LETTERS OR EMAILS FROM SOMEONE CLAIMING TO BE MY FRIEND ,, BECAUSE THIS IS SOMETHING THAT IS SO WRONG , I ENJOY EVERY SINGLE EMAIL AND EVERY SINGLE LETTER THAT I RECEIVE , IT IS WHAT KEEPS me GOING , IT IS WHAT HELPS ME TO GET THROUGH LIFE , THE PHONE CALLS THE LETTERS , THE CARDS THE EMAILS KEEP THEM COMING AND PLEASE PLEASE WHENEVER YOU RECEIVE ANYTHING THAT SUGGESTS THAT I NEED TIME , YOU MUST IGNORE IT , I NEED TO VIEW THE EMAILS MYSELF BECAUSE I want to know who would do such a thing to us ,, I have only asked Brooke to write in my journal and Unless the emails come from Brooke and myself you must not listen to them , this obviously is a person who is trying to ruin our lives .
Our Lives are already complicated enough with all of Sammy-Joes medical needs and we try very hard at keeping our life positive and then we come across people that try and make it worse ,we do not need this extra complication I am so disappointed in hearing this , I want to get to the bottom of this straight away ,,please email me , phone me write to me if you have received anything to the very nature of what I am talking about because if you have you need to write to me ,, because I have not asked anyone to write to people on my behalf .
Some of my friends were so hurt by that email and backed off from me ,, why and who would do such a thing to us ,, please if you are one of my friends that received that email please call me , write to me because it wasnt from me ,, someone is trying to hurt us ,, the sad thing is I havent done anything to anyone and cannot understand why this has happened .
Maria
please pray for my friend Nikki
Keep this Ribbon close to your
heart, in honor of Nikki and her
fight with Leukemia!
-~*~Please Keep Nikki in your Prayers~*~-
Karen, Kevin, Nikki, & Kyle
www.caringbridge.org/mn/nikki
LIFE is an opportunity- benefit from it-
LIFE is beauty, admire it.
LIFE is a dream, realize it.
LIFE is a challenge, meet it.
LIFE is a duty, complete it.
LIFE is a game, play it.
LIFE is a promise, fullfill it.
LIFE is sorrow, overcome it.
LIFE is a song, sing it.
LIFE is a struggle, accept it.
LIFE is tragedy, confront it.
LIFE is an adventure, dare it.
LIFE is luck, make it.
LIFE is too precious, do not destroy it.
LIFE is life, fight for it.
"What Cancer Cannot Do"
Cancer is so limited...
It cannot cripple love;
It cannot shatter hope;
It cannot corrode faith;
It cannot eat away peace;
It cannot destroy confidence;
It cannot kill friendships;
It cannot shut out memories;
It cannot silence courage;
It cannot reduce eternal life;
It cannot quench the Holy Spirit;
And most of all,
It cannot lessen the power of the Resurrection.
here are some photos of Christmas eve and Christmas day 
Maria
New Years Eve 31 st of December 2006
Sammy-Joe has had a terrible week , he has been so sick and been very irritable , his peg site is all mucky and infected again , I had to get the locum doctor to come over and see him ,because I thought I was going to have to take him to the emergency part of the hospital , the locum said keep an eye on it if it starts to bleed then take him , yesterday he had some bleeding , I called another doctor and now he is on antibiotics for the site and some ointment , well he seemed to improve almost immediately , so hopefully these will help him , he has been so sick for about six weeks on and off , its driving him a little insane also , he keeps telling me ""IM SICK << IM SICK "" and he truelly is , he has had some roaring tempretures the last few days , but I was trying so hard to keep in out of hospital ,giving him panadol every four hours , I was starting to believe we were going to start the new year in hospital ,, please please pray because I feel that we still may end up there , Sammy-Joe seems to be going down hill pretty quickly lately ,, I have been praying so hard lately .
Sammy-Joes carers are also very concerned as they have commented on how unwell he has been lately .
Yesterday I was so heartbroken , my friend Julie ,, Collins mum, emailed me to let me know that Tina s boy Lance passed away in his mothers arms , I was so heartbroken and sobbed for most of the morning , my cousin Carmen came over and she asked me ,out of concern for me, how I feel about that and have I thought about it for our future , I told her I am going to need people to pull me out of the darkest hour of my life when it does happen, because I cannot imagine my life without Sammy-Joe in it , this is all I know and what I HAVE been doing for the last 18 years , everything I do is for my children , I told her that Christian will probably be the only one that can pull me through it , he will have to reach to me and pull me out , because the pain is too hard to bare, to carry , to hold , please pray for Tina because my heart is broken with the news of Lance s passing , Tinas heart is my heart and every mothers heart that has a child that they adore, love , nurture , we are all mothers and we know that the pain of losing a child is the worst pain you could ever experience . It is unimaginable ,
Monday 25th Christmas Day ,, Merry Christmas
merry Christmas everyone , Sammy-Joe has spent the whole day asleep , he isnt well and just wants to sleep , he has a fever again and is saying he has a sore ear and throut , he opened some of his presents in bed , but didnt have the energy to do anything else today .
I will update tomorrow , I hope your day was filled with love ,happiness , peace , abundant love
best wishes
Friday 22nd December 2007
Sammy-Joe has had a horrible time lately with his illness , he has been vomitting and having lots of poop issues , finally it stopped today , he seems a little better , not so aggressive and was also quite talkative again , something that has also improved since his hard time in June this year , what a terrible year Sammy-Joe has had , we have had so many things happen to him , and I am really glad its Christmas , because this is a happy time for him , he is so motivated right now , he even went on another outing to the Bell street Aquarium to buy a fish , with Christian and Christie and myself , , it was a quick trip and he lasted mainly about 20 minutes in the store , and then sat mainly in the car for about another 10 , but at least he tried to do it , the motivation was the Fish , which he named LUCA after the sales man that served him , Sammy-Joe is such a beautiful soul , he remembers who is kind to him ,, he was also motivated to go to the post office and pick up a parcel that HUGS AND HOPE Elf , Suzie Bahmanyer , thank you for what you sent him for Christmas , thank you so much to you all for all your kindness , these are the things that brighten Sammy-Joe s days , he loves knowing that people from all over the world think of him , thank you to everyone that has sent us cards , hats , ornaments for our tree and toys for him ,he loves it and to see him smile , makes us so happy , he can get so sick and to manage a smile , it truelly is a miracle .
Christian has been such a great brother to him , I am so blessed with my children , they are beautiful souls on this earth , thank you God , I am grateful , so very grateful .
We have also had some sad news from Brooke , Harley her dog , her best friend , her companion and guide has passed away , please pray for Brooke who has had so much saddness also this year , lets hope that 2007 is a better year for all of us , speaking of prayers also , please pray for all the bushfire victims , I am praying everynight that these families stay safe and that God can bring some rain to them to stop these fires , so many families have lost loved ones , possessions and their homes , it just doesnt seem fair right before Christmas , a time that should be joyous , its just isnt fair .
Here are some photos of Sammy-Joe and some of Christian playing Basketball , also some photos of him opening his Hugs and Hopes parcel , he didnt want to wait til Christmas Eve .
He was so excited about it all , he loves Christmas !!!
We have had lots of visitors also , bringing pressys to Sammy-Joe and Sammy-Joe even got to meet our cousins from Italy , they were very touched by Sammy-Joe and got lots of hugs also from him , Francesca and Michele , thank you for coming out to see him I will keep intouch for sure .
Uncle Vince and Tom came to see Sammy-Joe the other day ,I was pretty impressed with Sammy-Joe as soon as he saw Uncle Vince ,he had a smile from ear to ear and he also shook hands with them both , very impressive , Thank you Uncle Vince for all your kindness and thank you to the Lions Club , I will never ever forget all that you have done for Sammy-Joe , and also for what and also for Christian , everything you have done to make my children feel special and important , you are all embedded in my heart and soul for ever .
thank you to TOM also for everything you have done for us and for all the phone calls you accept all the times I have asked for help and for all the times you have been there , trying your hardest to make our lives a little easier ,thank you thank you I will never forget any of you ever , The Lions Club as been our rescue ers , they have pulled us through this year and last year ,helping to cover the costs of Sammy-Joes medical needs ,and for nappies etc etc , thank you .
I also want to say thank you to Brian and Christie , Pam , thank you for being part of our family and thank you for caring for Sammy-Joe in so many ways , also thank you to Liz My case manager and Janet from very special kids , I couldnt have got through the year without all of your help and support ,, its been a tough year , Sammy-Joe couldnt attend School at all and spent most of his year sick in bed , so to know that I have very supportative and loving people around us , makes things seem a little lighter for us .
Thank you to Heidi , Joe , Peter , Sam , Simone for all that you have done to try and get the Trust Fund set up , to my friend Robyne also for being a part of the Friends of Sammy-Joe Foundation , we cant wait to kick start this off the ground for 2007 ,, also my friend that doesnt want to be mentioned , for all of her efforts in everything she does .
I had some Good news the other day , the principle of Glenroy Specialists school called me to let me know that the application to receive homeschooling for Sammy-Joe has been accepted and approved by the Education department , yippee , this means he will get a teacher twice a week , a physio therapist once a week , a speech therapist once a week and an OT once a week , good news , finally things a happening , I am so pleased with this news , I was so worried that Sammy-Joe was going to miss out on school again next year , he has one year left of school and I was so sad thinking he would miss it because of his illness .
MERRY CHRISTMAS AND HAPPY NEW 2007 ,LOOKING FORWARD TO A BETTER YEAR !!!I will post some more photos after xmas ,,
hope you enjoy these ones
Merry Christmas Everyone , I hope your day is beautiful and full of joy .
Sammy-Joe loved his presents from Hugs and Hope elf , thank you so much , he loves them
.He couldnt wait to open them ,,lol,, 
Jordan and Emily came to visit with their mum and dad Pauline and Frank , our beautiful cousins 
Pauline was so lucky to get a hug from Sammy-Joe , he loves hugging , it was so funny .
Sammy-Joe decorated the tree with Christie , he loves Christmas .
Christian playing basketball , he is number 50
Go Killer Bees !!!!
Thursday December 21 st 2007
We need Rain , we have water restrictions and the weather is so hot ,all our plants are dying , our trees are terrible .
Sammy-Joe is so sick at the moment , he has a UTI and has been feverish and vomitting , he has also had the poops all night long , I feel so sorry for him , he is so sick right now
Maria
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