Family Life

Family Life

Tuesday, May 15, 2012

Family life

This is to answer the comment added below asking about Larissa and how my relationship is going now,
Well I must say that it is rather complicated,  as we moved back to Somerset from Hobart Last year as soon as Toby was cleared from the Royal Hobart Hospital, we wanted to attempt to reunite our family,  however as Larissa is now 14 she can do what she likes in the eyes of the family court and has therefore decided to stay living with her father,  our relationship has been rather strained as a result of our move and the fact that we was unable to see her for such a long time and other factors that I really should not post about, but it is really hard as a mother to know that your daughter is struggling where she is living but not being able to do a thing about it,  she will not let me help her and keeps pushing me further away.  we only get to see her one weekend a month at her request and it hurts so much to watch her fall into the pattern that is becoming her life but not being able to help her. As her mum  I have offered her as much as I can, I have hopefully made it clear that I lover her and I will always be there for her no matter what and all I can really do now is hope and pray that one day she will take me up on that offer and allow me to be her mum again.

In December 2011 we had some huge family breakthroughs,  Toby came off his oxygen completely and so far has remained off!  YAY YAY YAY, such a milestone for us, we are so proud!    also we had a family trip to Western Australia to catch up with some family that we have not seen a lot of lately. we had so much fun that we didn't want to come home,  Aimee Anthony and Myself went swimming with the dolphins at Bunbury

and we got to stay for 7 days a Bunbury Ronald McDonald House Family Retreat! it was so beautiful,  next door to a wildlife park and not far from the beach, we went to the Busselton jetty,

although disappointed as they refused to cater for Toby in his chair, and the weather was horrid, the jetty walk was still beautiful, until we got washed out :) we also visited a few of the local towns and beaches and Australia's largest Free fun park/playground "Apple Fun Park"   we went for walks along the coastlines with high hopes of seing some whales,  unfortunately they too were not willing to show themselves for us but the coastlines were beautiful and the lighthouses fantastic,  the fly's....not so much.   We went underground into a beautiful cave formation, and had some lovely BBQ's with family.  We all fell in love with Bunbury and the long balmy evenings spent outside with a glass of wine or two and cant wait to go back.

without the Ronald Mac Family Retreat we would never had been able to have our holiday so for their accommodation and assistance we will be forever grateful.

While we were in Perth we Got to pick up Toby's Second Skin,  as special suit that we had arranged and had made custom to Toby's unique body and ability's the suit was very expensive and thanks to a lot of fundraising by the Country Music Association and a very special Lady, we were able to order this suit for Toby,

 The suit is like a whole body splint, it is made of special neoprene to draw sweat away from his body so he does not get too hot but to also move with the types of movements that we want him to be able to make and with special boning sewn in place to prevent excess movement in the areas we don't want. such as his Trunk & shoulders.  The Suit takes many hours of measuring of Toby and sewing everything just right for him all adding to the cost but when we finally picked it up WOW it is definitely worth it.  as you can see in the picture above... Toby has so much more support with the Suit on, he can actually sit up!  he still requires some hip support and can throw himself around a bit  but he has so much more overall body control in the suit that it is amazing.  he now wears the suit everyday under his clothes,  it is part of him,  like his ears, he gets up each morning and first thing his ears go on and his suit goes on so that he can start his day.  it helps with completing much of his physiotherapy tasks and very important.... it is saving mummy and daddy's backs, as he has more control, we can carry him, pick him up etc without straining as much as required without it on.  this suit is a godsend.   But like everything for special needs it comes with a huge price tag and it has a limited lifespan,  this will only last him around 12 to 18 months before he needs a new fitting.  and at the cost of several thousands of dollars we are already wondering where the next one will come from.

Also while in Perth we got to visit a water park and the kids had a ball spending hours running up the stair to the water slides only to slide all the way to the bottom again.    to tell you the truth mummy enjoyed it a little too, I cant tell you how much we all needed to be able to spend this time just relaxing with each other without appointments and medical needs and flights to Melbourne and the best thing of all was that we didn't have to do any of this with oxygen.

However.  one disappointment was on the way home.  we were to bard a Virgin Australia Flight at the Perth airport, and upon arrival to the airport, we were promptly told that they would not fly Toby with his car seat!   despite my calling and confirming this with their call centre at least 3 times prior to the flight. the airport manager told me that Toby would just have to sit in a normal seat!   again despite my informing her of his disability's and how that would be impossible.    In the end after over 45 minutes of arguing with her and coming very close to missing our flight we were permitted to fly with Toby as long as we were to nurse him on our laps.    Disgusted we will never be flying with them again! and I recommend to everyone who is flying with someone who has special needs to never fly with a budget airline  as I said, even the best laid plans and you may think that you have it sorted out with the airlines  but when you get to the gate it is always a different matter and no one is willing to assist you.    its a scary thought to think that you might not get home after a holiday to the the other side of the country.

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