So where are we now?…..

Toby has been attending Kindergarten at our local mainstream school, and he has been accepted as just another child. The school have been amazing at including him, and both his teacher and teachers aids are amazing, they work tirelessly to ensure Toby doesn't miss out on a thing. 

Toby is bound to his wheelchair. he can not sit without the special support that it provides. Toby can not stand, walk, or even talk. however he does not miss out. His cognition is amazing and he understands everything that is going on. he is like a little sponge, absorbing all the information, but he has trouble getting it out. being non verbal, he uses a special book to communicate, but that is all about to change. Thanks to a very special man we were able to purchase him an eye gaze computer. at a cost of around $20,000 it was way outside our reach, but Ian decided to help us, a organised a fundraising marathon. He ran 42km and raised all the money needed to purchase this special computer. It has now been ordered and we are anxiously awaiting its arrival.  Toby will be able to use this computer with his eyes. in the coming weeks he will learn how to use it and how to make it talk for him, as it will have special software on it that he can use for a voice. just like his special book he has now, but he will be able to use it independently, and for us that is a huge thing, all we ever wish for, for Toby is to be as independent as he can. and personally I hated his special book. Although it has given him a voice, he has always needed to rely on someone else to turn the pages.  Now   with this special computer system, for the first time, Toby will be able to communicate on his own. That is so empowering.  Amazing,  and we will be forever grateful for Ian and all of those who helped to fundraise the money. 

Those that know Toby, know that he is a cheeky boy with a wonderful sense of humour and despite all of his obstacles he has never let anything get in his way. Inside he is a typical 5 year old, he loves to play with his friends and at school, he has lots of “girlfriends”. the girls like to play dress ups with him. Toby can count, and he can spell his name. he just does things differently to the other children. His Teacher aid is great as she assists him in every way, including in play. But the children, they are amazing. Times have truly changed, Toby is a star in his class, and nobody sees his wheelchair. They talk with him though his book, and the girls love to help him thought his morning routine of unpacking his bag and putting his drink bottle away. They help him choose his name to put on the board and they share there weekend stories with him, just as they would a typical child. Toby just “fits” into his class and the school. 

He is learning how to use his powered wheelchair, he has a head switch that enables him to use it independently. He is greatly encouraged on by his little friends at school, who are all amazed by his technology, and are eager to help Toby in any way they can. 

Earlier this year our resolve was tested again, as minor back surgery went wrong for me, casting me back into the world of pain and subsequently onto workers compensation again. deemed unfit to return to work, I was lucky enough to be able to negotiate an agreement with my new employer that allowed me to have 6 months leave to hopefully sort out my back issues, so I can return to work.  

In some cruel twist of fate, It was fortunate that I have this time off work as not too long after, we discovered that Kent’s cancer had spread to his bones, he had to have a partial hip replacement as the cancer had eaten away the top of his femur, The surgeon, a friend of ours promised that he cut and scraped away as much of the cancer he could, and he must have done the job as just last week after an intensive review we got the all clear of cancer in his bones. However the cancer in his lungs, continues to grow, and he will need more chemotherapy early in the new year. 

Kent still battles with lots of pain from his surgery, scar tissue is causing him a lot of concern, but his doctors are fantastic and are on to it with providing lots of pain relive medication. Despite his pain, we continue to try to live a normal life. As normal as we can anyway, fitting in as much as we can but also allowing for rest time. Me with my crappy back, fighting depression and Kent with his crappy lungs and bung hip, & Toby in his wheelchair, we must be sight to see walking up the street, hobbling, limping, and wheeling away. but we get on with it. Thats what makes us special. despite adversity, together we make it. and our love has never waned. Together we can fight any battle. 

Oh and we are whole again, my family is complete, Larissa has come home to live and I couldn't be happier. All of my children are amazing, all of them have had to deal with so much more than most adults, and yet they still stand. Love keeps us together, Love keeps us strong. Together we are Family!

SO now you are all just about up to date. 

I have  given you the short version, 

Mental Health

Chemotherapy continued for a few months, and Kent became unwell from the treatment, initially it wasn't too bad, a few aches and pains but after a few doses he was becoming really sick, Ill never forget the day he couldn't get out of bed, in all my years of knowing him Iv never seen him so sick, it was scary, he was so weak he struggled to get to the toilet. These days were not fun but we managed through, with the help of our families, we were living with my family, up stairs in my old family home, and although we needed the help and have so much appreciation for my parents for taking us in, my nerves were fried, I struggled with every day. 

Personally I was suffering with depression well before Kent’s diagnosis, with a long standing workplace back injury I had struggled with the time I had taken off work and the different treatments for my injury, I was a mess before that horrid Christmas, in fact that christmas day was marred with my moodiness and scars that I am sure I have left on my family by my behaviour, Suffering from depression and severe anxiety, but trying to hide it as I felt ashamed, I was so ashamed already at being off work on workers compensation that I didn't want to admit to myself or to anyone else that I had depression too.  I was angry that I had a back injury I was angry that I had constant pain and I was angry that I couldn't work the career that I loved and worked so hard to get to where I was.  I was severely depressed and about to seek help but once we got Kent’s diagnosis I pushed it all behind me. I needed to help him, and he needed me. he needed me to be strong, so some how, I have no idea how, but I pulled myself together and just got on with it, I did whatever I needed to do to keep us afloat, those months went by in a blur, and so I wont go into too much detail, mainly because I cant remember most of it, I think Iv blocked it out. But once Kent’s Chemo was finished, and all treatment had been given, everything stopped & we had to just wait for a while, just wait to see what happened next.  I didn't do well with that, My world came spiralling down, I burned out. The depression came rushing back to me hitting me with full force, however this time I sought help. I remember not knowing how ask, I felt ashamed that my husband was fighting so hard to stay alive, he wanted to live so much yet every inch of my body I just wanted to throw away, I didn't want to be here, I didn't want to be living through this, how do I explain to someone who is doing everything possible to survive that I didn't want to?  So I sat down, and wrote a letter to my husband, & to my doctor, as I knew that I didn't have it in me to say the words out loud, I handed the letter to him with shaking hands, not knowing what to expect, I just felt ashamed. 

I needn't have, he held me close, he comforted me, he understood.  and together we went to the hospital. I admitted myself to a private clinic so that I could get the help I needed to keep going. For a while I had to hand over control, I had admitted defeat, I was in a bad place. 

I spent several weeks in the hospital, recovering, and learning ways to control my anxiety and my fears of the future. but I really just needed the time out, that was what my mind craved, time to just shut down and press the restart button. During this time, I pushed people away, I alienated some of my family members, and I hated myself for this, at the time I needed them the most, I pushed them away. and to this day, the damage has been done, and is seemingly irreparable. I have to live with that. and for now that is ok. 

A period of shut down time was just what I needed. I was suppose to be learning ways to control my anxiety, learning self awareness, and enduring Cognitive Based Therapy. however I don't do well with quietness, I don't do, “self awareness”, I just needed time out. 

Im not even sure I felt better when I came out,  I was semi refreshed, recharged and ready to continue fighting. but feeling better within myself? I don't think so.  That was over 12 months ago now and I still suffer with this horrible depression, every day is a battle for me, every day I get up I put on a mask, and I pretend that it is all ok. I hide my thoughts, keep them locked away during the day only for them to come flooding back with a vengeance at night, but at least I can get through the days. I still have the strength to get up each day, I just manage my way through, any way I can. whatever it takes to get though. I keep telling myself I am ok. so for now I am OK

Wow where to start?

It's been a long time since I have posted, and oh my gosh, a lot has happened. I don't even know where to start, so.....

Im starting from the worst day of the last few years one of the worst of my life,  

New Years Day 2013. 

Kent, my beautiful husband had spent christmas week, waking up with a swollen head and neck, shocked, I asked him repeatedly if he could breathe properly and if it was painful etc, we had no answers and as the day went on the swelling went down. As it was over the christmas period and he didn't appear to have any other symptoms, we put off seeing the doctor, however on new years day I was concerned as it wasn't getting any better, I sent him off to the Doctor.  He came home with and appointment for a CT scan the next day, I knew that wasn't a good sign and I couldn't sleep all night thinking the worst, my fears were confirmed when the next day he didn't even make it home from the scan before the GP called him and told him to go straight to the Emergency Department.  I called my parents to come and watch the children so I could take him to see what was going on, there was talk of a mass.... He was rushed through the emergency department and taken to a procedure room where they put in a drip and talked of reducing the pressure of the mass... it was a little while before we were really told what was happening. with very little information we were then told to go home, pack a bag and go straight to the Launceston Hospital, a bigger one than our local abut 2 hours away. Still shaking when we went home to pack, Kent;s family had arrived along with mine and we told them all we knew. Kent had a mass that was around his Superior Vena Cava and it had reduced the flow of blood that was returning back to his heart to less than a pin hole. we were headed to Launceston for Emergency Radiation Treatment to hopefully reduce the tumour so that the blood could flow better. and they could do further tests to know more about the dreaded mass. 

My nursing Degree kicked in, I acted on impulse, I felt numb, but I had to stay strong for my man, I knew It wasn't good, I knew we were in for much more bad news but I tried my hardest to stay positive. I bargained with my life, thinking up different offerings I could give to change the results that were coming our way. But nothing could prepare us foe what was to come.  

Arriving in Launceston late at night we were given more information, Kent has what is called SVC syndrome, (Superior Vena Cava Syndrome) it was what was causing the swelling when he was waking up in the morning, It was a large tumour that was wrapped around his SVC and leeching into his heart muscle, it was restricting the blood flow and so the blood was pooling in his head and neck and lymphatic system while he was sleeping.  The Tumour is Lung Cancer! Stage 3A Adenocarcinoma to be exact. and Just like that, our world came crashing down. shattering into splintered shards all too sharp to place pack together. People don't recover from this, there is no operative procedure they can do, the position it was in meant that there was no option for surgical removal. They needed to treat it with radiation immediately to reduce the size so blood flow could return to his heart. With no time to digest this information Kent was tattooed and measured up for radiation. His regime started immediately and so did chemotherapy.  Those shards of our life were slippery to put back together, But I some how we managed through those first few days, stumbling over words, neither of us really knew what to say to each other, we didn't know what to say to family, and we didn't know what to say to ourselves. All I could think of was what if I have to live this life without my one true love, my heart was breaking and It felt like hell. I wasn't sleeping, running though all the things we had yet to do, I wanted to grow old with this man, I wanted long walks along the beach I wanted hand in hand squished on a comfy sofa with a quilt over our knees, watching our grandchildren, great grandchildren play happily in the sun as it streamed through the windows. 

I wanted working holidays in Sudan where I was nursing children and Kent was helping build houses. We had Dreams. We had so many more dreams, and so many that we hadn't even thought of yet. In a matter of a few words it all came crashing down, your cancer is Terminal!

The world stopped spinning. 

Everything happened in very slow motion, days rolled by and I don't remember how,  but we fought through, one horrid day at a time, Radiation, chemotherapy, PET scans, CT scans .. a whole new vocabulary that we had to learn, a whole new life.  we just went on, I don't know how, we just did what needed to be done, then at one Oncologist appointment we had decided that we needed to know more, we needed to make some sort of plans, so we needed to know exactly what we were dealing with, the time of living in blissfully unawareness was to come to an end. we asked the question,  How long? 

the doctor initially said, You don't want to know! 

I knew that wasn't good, my stomach lurched, I wanted to vomit, I could feel the saliva forming in my mouth, Swallowing it down, I said “yes we do, we really need to make some plans.”

The doctor said, “ its not good, it could range from a few months, to 10 years, but if you want a more specific answer Id say most people at your stage would have maybe 2 years!

I cant explain how I felt at that moment, it was a mixture of relief and horror at the same time. I guess I was expecting it to be more like a few months, so I was relieved that it was likely to be much longer but in that same minute, with those words the doctor took away all of our dream. how could we pack a lifetime of memories into just 2 years? words couldn't explain how I felt, and I can not imagine how Kent felt, never could I imagine It was hard enough for me knowing that this horrid disease would take my husband from me, but for him, finding out your life has an expiry date on it that is much shorter than you ever dreamed. I don't know how he did it, but he held my hand and said, its ok well be ok, Iv never seen a stronger man, than in that moment, he was worried for me. he was consoling me, yet he was the one that had received the death sentence, How could he be thinking of me at this time? but he did, he held me so close and confirmed… well be ok.

That trip home was the longest 2 hours, time seemed to just float by as we tried to make senesce of what we had heard. we talked about how we would tell our families and what we would tell the kids. Oh my gosh the kids were a whole other kettle of boiling water. 

Fortunately they had been at their fathers house for the christmas holidays and had missed out on this whole saga. They knew nothing, a small blessing, it made it easier for us to get a handle on our own feelings before we had to deal with theirs. but it was to come. something else we had to think about.  But for now it was just us, Kent Toby and me. Toby was along for the ride, he knew something was up, but didn't quite know what. 

Things got interesting at one stage, Kent was in Launceston for radiation and I was stuck in Burnie with Toby in Hospital, he was dehydrated and had a nasty chest infection, he needed IV antibiotics. Toby was refusing to eat and had a nasal gastric tube inserted so that we could give him much needed nourishment. he was a very ill little boy, so we had not only lents cancer journey to deal with but Toby’s being unwell to add to the mix. 

Then, with another stroke of bad luck we were hospitalised just a few beds away from my Ex husbands step daughter.  In another cruel shard to add to our shattered family, my children's step sister had been diagnosed with cervical cancer and was in the final stages of her illness. She was just 17 and was very seriously Ill. I wont go into that too much as I know very little about that situation, just that it was affecting my children and they were living that horrible situation with their father as they were with him and his family for the school holidays.   

Anyway, she was hospitalised just beds away from us, and I was doing my best to keep away from that situation, we were dealing with our own horror story and didn't need to add any more trauma. Things have never been great with my ex since we split up, and he got remarried, with nasty court battles over custardy of my three eldest children we were at a stage where we were not talking, not even the slights text message to find out what time to pick up children was passes without nastiness.  So. it was a very uncomfortable time for me.  I didn't want to add to the nightmare that they must have been facing knowing that their daughter was in the final stages of her illness. so I hid ourselves, just me and Toby, in our single room, with the door firmly closed, hoping that they didn't know that we were in there, I was too scared to even go out for coffee, as I didn't want to bump into anyone from that side of the family. of course it wasn't long before they knew that we were in the bed just down from their daughter, and things got even more uncomfortable, as their family members would linger around just outside of Tobys door, I was hoping that they would just keep to themselves, but unfortunately, they seemed to make a point of being around and hovered in the hall when doctors were seeing Toby. I was very frustrated as I made a huge point of staying out of their way, I locked us in a tiny room for almost a week, so that the family could grieve and do what they needed to do without my presence, I knew they didn't need any bad, awkward, uncomfortably situations with me thrown into the mix of the horror that they were going through.  and I didn't want my three eldest children to know anything about what had been going on with us, Kent’s illness and Tobys illness until we had a chance to talk to them properly about it. we wanted to be able to sit down and fully discuss it so they knew what was happening. I remember locking us in the room and knowing my children were just outside our door, they were walking backward and forward as few times as they went to get ice-cream from the canteen, blissfully unaware that Toby and I were in the closed door right next to them. I didn't want them to feel uncomfortable and awkward, as if they knew we were in the room they would feel torn between who they should be visiting, and wouldn't want to make their dad angry by spending time with Toby and I, and I didn't want them to know about Kent until I could hold them, and tell them that it would be ok, we would get through it together whatever was to come, together we would be ok. so we hid,  It was heart braking knowing they were just behind the door and after all we were going thought all I wanted to do was hug them, hug them and never let go.  but we hid.  we hid for them, so they weren't torn apart, they weren't uncomfortable, so that they could say their good-byes to their step sister without knowing the truth about Kent, they needed the time to say good bye, they didn't need anymore hurt or confusion so we hid, in out tiny room, and my heart beaked for them. I knew they wold be going thought hell, I knew they would be having the hardest time of their lives and I couldn't be there for them as, I had even more horrid news for their tiny hearts to hold, I wanted them to have time, before they heard it from me, I wanted them to digest and grieve for their step sister the way that they needed to without adding any more hurt. so we hid. 

It was so very hard for me, I was away from Kent as he was fighting his battle, I was helping Toby fight another battle, with his illness and his eating issues, I was trying so hard to hold it together, for us all. I was standing strong, as strong as I could, to keep it all together, but my heart was breaking and all I wanted to do was open that door and hold my babies and cry and cry a river of tears, I wanted so badly to smell them, to touch them and to be together as a family. but no  I couldn't do it to them. 

I needed to let them be, to be with their other family to grieve and be family for whatever time they had left. 

I have never felt so alone. locked in that room.  knowing that there was only a wall between me and my whole world, and Kent was still so far away, we were apart. so broken apart. 

The time that the oldest three where with their father was actually a blessing, looking back, as heartbreaking as it was. it allowed for Kent and I to grieve together, to try to understand what was going on in our lives, to try to piece back together some of those shards of what use to be our lives. things were going to be so very different. 

Somehow in the blizzard that was those few weeks we decided to sell our house, and to move in to my parents house, they have a large house and there was enough room for us to take over upstairs and still live a relatively separate life, for us to have our own space, yet to have the support of my family right there. We needed help, with so may appointments and so much going on in our minds, we needed someone to take over the hard stuff, the meaningless stuff, the financial side of things so that we could be together, family, to piece together our lives again, and when my father offered this up as an alternative, we jumped at it. Heavily in debt with car loans and a home loan we were only just making things meet with two incomes, and with Kent never going to be able to work again we really needed to reassess our lifestyle,  Ill be forever in debt to my parents, they jumped in and never thought twice about helping us, dad took over the hard stuff so I could concentrate on my Hubby, my Baby, My children, The Real things, the important things. He allowed me the time I needed to get myself together. we organised our move and with the help of our friends we packed up our house, our lives into boxes and said goodbye to the house that had so many of our great memories. 

We had so much help those few weeks,  from family, from friends and from the community. The real-estate even pitched in and sold our house without charge. Allowing us to get on top a bit.  to keep our heads just drifting above the water.  When I think back I will never forget just how much help we got. Friends became family and family rolled up their sleeves without thinking, without them all, we would have drowned. 

However at the same time, friends, close friends drifted away, I think they didn't know what to say, so they chose to not say anything, some vey close friends, or who I thought were very close friends, pulled back out of our lives, thinking I guess it was all too hard. I still grieve for those friendships but I guess that hard times really do show you who your true friends are, and although I can kind of understand why they found it all too hard, I just wanted a friend, never anything more, I never expected anything miraculous, I never wanted a councillor out of them,  just a coffee and a hug. To this day I am still disappointed in the loss of those friends. I loved them, I still do and I cant understand why it was too hard.  how hard can it be to hug a friend,  to say “It will all be ok”,  even if it won’t.  you just say what you need to say to get thought the day.  It will be ok.  We will be ok and sadly we will be ok without those friends.  I just wish they still wanted to be part of our lives, I miss them. 

Wow, how much has that blown your mind? and there is still so much more to add, still more sadness, much more happiness and many twists and turns to add to get you all up to date. and I am sure, many more to come as we head down this waterside of life, we cant stop, its too slippery, we just have to follow that path that is destined for us, we have to get wet, we have to scream for help, and we have to trust that there will be a nice pool of water, safety, at the end that we can splash into and be OK. we will be Ok, we just need to remember to love and laugh along the way.

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.

The battle continues

After Toby had his first cochlear implant, it was the beginning of a whole new life for our family. we had so much to contend with, and so much to learn.  While Toby was beginning to understand the world around him he had fortnightly appointment in Melbourne for "mapping" (updating of the processor) as they start of with very minimal settings as you can imagine, if they all of a sudden put it on the highest setting it would be way too much information for Toby to process all at once. so It was turned up slowly. He also had speech therapy appointments at the cochlear clinic, to help us learn how to best help him understand what was going on and what all these new sounds meant.  We first started off with animals and transport sounds, as they apparently make up a large part of the English language, sounds such as, shhhh, Sssss, Mmmm, Oooo, Ahhhh, etc they also show us what sounds that Toby can hear and are sounds that we have to continue to practice with him ever single day to ensure that his CI's  (Cochlear Implants) are working.

 We had so many trips to Melbourne that the Rotary Club of Glenorchy helped us out by purchasing us a new car seat for him, especially for travel as taking his car seat in and out of the car all the time was rather difficult, He has to travel on the plane with a car seat so that he can actually "sit". and that in itself poses a problem.

The airlines will not allow him to sit on my knee as he is older that 2 years. however he is completely unable to sit in a normal plane seat.   so the airlines suggest they have a harness that he can use,  however the harness is not much better than a normal seat belt and does not support him in anyway,  "no way he can sit safely like that"  (remember he's like a rag-doll)  So we have to take a car seat, it is recommended by the airlines and approved for use by the airlines as long as it meets Australia standards,  however most airlines flying out of Tasmanian are regional routes and therefore they will not allow his car seat on the plane!  Regional Express are the only airlines on the coast that will transport Toby, otherwise Jetstar. That's it for Tasmania,  kind of limits our options doesn't it? so we fly with REX.
Toby loves to fly with REX, he knows how it all goes, he waits patiently for the hostess to bring him his chippies,  and if they take too long to get to him he can be heard yelling out to them from his seat. All of the hostesses and pilots that fly into Burnie Wynyard and the ground staff at both Melbourne and Wynyard now know Toby and welcome him on-board each flight.  we are usually greeted at Melbourne with a special car waiting to take us to the baggage claim, bypassing security so that we can get through easier with his oxygen.  Generally the staff are amazing, but for one unpleasant experience I had with the REX Melbourne Airport Manager after a flight that went wrong.   but that story is for another day.

We travelled two and fro to Melbourne for months, all the while going to Tobys normal physio appointments, Early Childhood Intervention lessons, Occupational therapy, appointments with his Teacher of the deaf and the Royal Institute for the Deaf and Blind also had weekly teleconferencing lessons. He had general medical appointments and follow up appointments with his neurologist and another sleep study to check his Oxygen requirements. Life is pretty hectic as you can imagine, between trying to fit all this in, plus find time for therapy at home, time for our other children, time for work and time for ourselves. (whats that?)
But Toby did amazing, he took it in his stride and slowly he learnt to understand the sounds.  I'll never forget the first time he showed us .... we was going for a stroll along the path at the beach, and we passed under a tree that had lots of parrots in it, they were being rather noisy with their chirping, and Toby looked up! amazing,  he actually heard the birds!  not only did he hear them but he knew where the sound was coming from, so he was beginning to master direction,  but then he surprised us again by making the sign for bird.
WOW,  we were blown away.  Times like that really make it all worth while, all the hard work and the long hours, the lack of sleep, really don't compare to sharing a moment like that.

Toby was booked in to have his second implant, his Left one. for November 2011, it was a little while later as he had infections in his left ear and they really needed to make sure that it was OK for him to have it done. one attempt seen him actually taken to theatre and all the prep surgery done, before the surgeon noticed that he had massive infection in his inner ear and they could not proceed.   That was so incredibly heartbreaking.  To watch him go through so much suffering post surgery and all for what seemed like nothing,  unlike the first OP he was in so much pain this time. he had had a lumber puncture at the same time at the request of his neurologist, as while he was already anaesthetised he wanted to check some tests for Toby's neurology. seemed simple enough, but Toby got a spinal headache, and screamed for hours, we were not sure if it was from the infection, after the Drs had played around in there or from the LP,  didn't matter it was enough to make us doubt our decision to go ahead with the 2nd Implant. However once we got back home and things settled down for Toby we realised just how far he had come and we really did want to give him the best, so we booked to try again,  November was a success!.

Also in November we were given the all clear from his last sleep study to trial Toby off his Night Time Oxygen. all his numbers were looking good finally and we were more than happy at the prospect of finally getting rid of the oxygen. We had a family holiday booked for December in Western Australia, and we really didn't want to take the oxygen with us, so we set that as our ultimate goal.  to be totally O2 free for our trip.   and guess what?....... He made it,  and without any major dramas. (Insert BIG smiles here)  this was a huge milestone for us all.  finally it was all starting to come together, and our baby boy was beginning to experience a whole new world.

It was also around this time that Toby got fitted for a special suit called a Second Skin.  I will go more into this in the next post. but it promises for many more exciting things to come.

He fly's so much he could be a pilot if he wanted!

Hearing you loud & clear

The end of June 2011 Toby finally got his first cochlear Implant,   the right side,  he was suppose to have both done but that wasn't to be.
It wasn't an easy decision, as its pretty big surgery and for Toby its enormous, he would have to go to ICU as his breathing problems were still a problem, and any anaesthetic could make him stop breathing on his own, not to mention the normal risks of infection etc,  Like I said it wasn't and easy decision but it was still one that we didn't really have to take long to decide.  With all of Toby's other issues this was really the only one that we could control, sort of, his hearing was the only thing that we could help him with. we already knew that things were going to be much harder for him and we wanted to ease that as much as we could. So we got him booked in.

After a few delays Kent and I found ourselves waiting....and waiting in the waiting room for the surgeon to come and tell us that how he had gone with the surgery,  we thought that he must have had both as it seemed to take forever,  and we had got to the point where I went to get some magazines to fill in the rest of the time.  just as I left the room the surgeon came out,  and told Kent that they could only implant his right ear as the left had too much fluid in it and it would be dangerous to implant when there was fluid in the ear,  as he could end up with major problems and no possibility of being able to hear even with an implant and we were not willing to take that chance! Although we were disappointed that he only had one ear implanted, we were also over the moon about the possibility that he will soon be able to finally hear our voices.

When he was recovering in the ICU later that day we notice that he was really tight and difficult to hold on to, his muscle tone was all over the place and he was throwing himself back and forward and he was rather unhappy about it all,  it took us a little while to realise that he had missed out on his tablets, as he was fasting before the surgery, and this is when we first noticed just how good they were for Toby. he had never missed a dose before so we never got to see what he was like without them,  and well.... within half an hour of giving him the dose he was a different boy, so much more relaxed and he had smoother control again, his muscles had stopped screaming and we could hold on to him with more ease.  Now we know what to watch for we know just how much benefit he gets from his medication and we can tell when he has grown out of his dose.  I'm not a huge fan of giving drugs to kids, but when you see what they can do for kids like Toby,   well it gives him use of his hands,   all be it not much,  but at the same time, so much more than he has without it.

Two weeks later was switch on,  The big day,  we were taken to a little room where all the external equipment was given to us.  Totally overwhelming to say the least! we were give a huge big suitcase full of equipment! and the only thing that goes through your mind is "but he's so small, what am I suppose to do with all of this."
The therapist pulled out his processor (the external part) and I immediately wanted to cry!  I knew nothing of these horrid things except that we wanted to make it look funky, so we had ordered a blue one with soccerballs on it. My mind set is and always has been... if he has to have it and we really dont like it, then we make it look funky, the brighter the better. no point in hiding it.   so when the therapist pulled out a skin coloured processor I was devastated. It looked hideous, and completely medical. not what we wanted at all.    you have no idea how relieved I was when I discovered that the soccer balls was actually a cover, and he had several sets included in that BIG bag,  Phew..... funny thing is,  our son is just about to hear for the first time and all I was worried about was how horrible it was going to look.   I guess as parents we can deal with a lot of things, but there are some things that we have no control over and the way that they affect us cant be predicted.

Anyway after getting over that little episode we were taken into a soundproof room, were we were to trial his implant.  ( they don't give you the processor straight away, as the implanted part has to have time to heal. the skin and bone has to heal completely before or it may break down and become infected.)
His Processor was put in place and the testing began....at first it was ok, he seemed to respond to some of the beeps and it was pretty magical to watch,  once they got the settings right they tried him with the puppets, and louder sounds.  one of the puppets was a big bird.  the theory was that if he could hear the sound he would turn to the puppet and then the puppet would do a little dance,  he had done this test a thousand times before without any problems. Today he could hear! and when big bird made a noise he screamed, he was terrified! shaking uncontrollably, we had to stop the session to try again later.  not quite the reaction we wanted but still HE COULD HEAR! and we couldn't be happier!

My beautiful man listening intently to mummy reading him a book

We left the Eye and Ear hospital with our giant bag of equipment, and headed for the museum to fill in some time, while we were there we couldn't wait to find a quiet corner to try on Toby's new ear again. this time we got a better reaction, he was in awe of his new surroundings, and he seemed to be looking everywhere, trying to decipher what he was hearing.  we had been told that his hearing would be different. that initially it would be just a series of beeps and bops and that his brain had to work out what it all meant. but it was amazing to see him hearing the world for the first time and to see the smile on his face when he realised what mummy and daddy sounded like.  All these things that we usually take for granted, we have learned not to. Since Toby came along, Kent and I have learnt to never take anything for granted, we try to take in every little thing that happens, we try to appreciate every smile, every tear, every sunny day, and every sound that we can hear, and we are never going to give up helping Toby to hear all of the beautiful sounds that our world has to offer.

Well It has been a long time since I have updated you all on our progress, so this could be a long post,
Toby will be 3 years old in a matter of weeks, or days 20 days to be exact, wow  how time flies when you are having fun......or trying to.

Toby has been diagnosed with dystonic ataxic athetosis Cerebral Palsy, a long fancy name, a not so fancy diagnosis, it was one that we were expecting but still remains hard to swallow. Basically his brain has trouble communication with all of his muscles and therefore he is really floppy. like a rag doll,  in fact the medical world often call it a rag-doll dystonia as when you pick him up, there is no response from his muscles, and if you are not careful he can slip though your fingers! This makes it incredibly hard for him to do most of the things that we all take for granted. He also has an intention tremor, this is a little like people with Parkinism, in that the harder he tries to do something the harder it is for him, his muscles will shake and make the task impossible for him, and as you can imagine, incredibly frustrating for him. We knew that something was up when he didnt meet his milestones, it seemed to take forever for him to roll over and we kept just waiting for him to be able to support his own head,  denial was firmly in place when we kept saying "when he can sit"  when he was already 12 months old and still not able to hold his head unsupported. eventually it got the better of us and we demanded to see a specialist.   The next thing we know we were sitting in in his rooms at St Giles, expecting him to tell us what was wrong,  shocked beyond belief to hear that there is likely nothing wrong with him and that we should come back in 3 months to see if Toby was better.  Both my husband and I knew better, we were not silly we could see that Toby was struggling with everything, he was only just beginning to roll over was no where near being able to sit up let alone stand and he couldn't hold his own bottle or spoon. But we took what the Dr said and left, hoping that he was right, praying that when we went back Toby would be able to do all the things that we were hoping for.

As the days and weeks passed and there was no improvement in his muscle tone and his ability we were beginning to worry we both knew that we were in for a long road and that Toby was going to need lots and lots of help. Back to the Specialist, we were certain we knew what he was going to say...... we never expected for him to say  he thought Toby was Intellectually Disabled,  no other input, just come back in 3 months again.
I was horrified,  anyone who spend more than a few minutes with Toby knew that he definately was not intellectually challenged! No way, quite the opposite in fact,  But he did have enormous physical difficulties. every question that I asked of the specialist was shot down and we were made to feel like horrible parents as we questioned him, he even went as far as to say that I wanted Toby to have CP so that I could claim all the benefits!   ha!  that's a joke, "What bloody benefits???"  We have not seen any yet!   needless to say we stormed out tears flowing, I vowed to never see that horrible man again!

After that I got straight on the phone to Toby's Respiratory Paediatrician in Melbourne to tell him the story, he has always had time for us and Toby and I knew that he would understand and be able to help refer Toby to someone better, and better he did.  Within about a month we were on a plane too see his friend who happened to be the head of Paediatric Neurology at Monash Medical Centre. Dr Michael, I loved him from the start!  the minute that we walked in the door,  I was scared as hell of what he was going to say especially after our last experience, but he made me feel comfortable, he spoke to Toby first up and made him part of the conversation, he took in the nervousness of my Mother, (she came as I thought it would be helpful for her to be able to ask questions and understand Toby better) in his stride, and easily answered her questions, helping both her and me come to terms with Toby's diagnosis, he called it "dystonic ataxic athetosis Cerebral Palsy" He explained everything, and although I was devastated to hear that my beautiful baby did have a problem, It was also a relief to have a name for it, and to know what we were heading into, as I said, Kent and I suspected for a long time, so it really wasn't a surprise  but it still was not what we wanted to hear,   no one ever wants to hear that!.

He offered to try Toby on a medication,  it had side effects but it just might help him a little and with Toby, even the tiniest scrap of help can make a huge difference to his life, so we jumped at the chance. The medication would help to stop his drooling, his excessive sweating, and may help ease some of his movements, it was called Benzhexol,  and it use to be used for Parkinism.  We started Toby on the medication and almost instantly his chest was a lot less moist sounding, but it took a little while longer for us to notice the other benefits.   In fact we didn't notice them at all until he had the surgery for his first cochlear implant.