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.

Friday, May 11, 2012

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 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.