Moving On,

Two weeks later, Toby gets his hearing aids and they look huge on his tiny head, it was very confronting at first and I really didnt like to put them on him, he cried when we put them on, but as he has trouble moving his arms in the right way, he cant yet taken them off. we are not looking forward to the day that he will be able to take them off, how on earth are you suppose to keep them on? we were given a special cap for him to wear with them to help keep them on, but soon realised that he really didnt need it. they stayed on just fine, but then we had to deal with the incessent squeeling that come form them,  His moulds did not have a good fit and so the air that was getting through was allowing a feedback. so they squeeled really loud. The lady from Australian Hearing told me that Toby shouldnt be able to hear it, that made me feel better but the was slowly driving me crazy,  imagin hearing 'naild down a chalkboard' all day!  let me tell you...Its torcher!

We began watching Toby intently, waiting for a sign that he might be able to hear more with the aids on, he had regular visits to Australian hearing for new moulds to be made and for hearing tests, we were teaching Toby to turn to see the puppet if he could hear a noise, and he slowly but surely began to see what he needed to do. It soon became obviouse that the aids werent doing at much as we hoped, he was only hearing really loud deep sounds even with them, he could hear his daddy when he spoke loud and in a deep voice but he never really reacted to my voice.   This is really hard to take, he will have his first birthday soon and I am not even sure if he has ever heard my voice.  it breaks my heart to see him smile and laugh at daddys voice, but to not even blink when I talk. I couldnt even begin to explain how it makes me feel.

The days are ticking by and I have still not seen Larissa, actually weeks have passed, I havent had much luck with finding a lawyer I could afford, but I now have an appointment to see someone who the womens legal service reffered me to, and she will apparently help me to file for legal aid, technically I am not suppose to be eligible for it, as I work and own a home, but as I have special circumstances I may be able to recieve it.  It is definately worth a try as I have not been able to get very far on my own, I have only been allowed to have a few very brief conversations with Larissa on the phone, and I feel like I cant really talk to her, as I dont want to upset her or make he not want to talk to me, so I really only have said Hi and talked about what we have been doing.   I did ask her about why she apparently didnt want to talk to me earlier and she said that her fathers ex told her that when her daughter told her father she wanted to live with her mother, her father threw her out and threw all her clothes and stuff on the lawn etc.  this made Larissa really upset and she was worried that I would do the same!     Yes I was furiouse. but not at her,  what stupid bitch would tell a 12 year old that kind of story!   she was obviously trying to make me yet agian look like a bad person. as if I would ever do that!   I tried to make Larissa believe that I was not mad at her,  but as I can not see her or cuddle her, Its hard and I dont think she really believed me.  I really really dispise her father for doing this to both her Aimee and Anthony and me, its not fair! its the last thing that we needed and honnustly if Larissa truely did want to stay with her father I would have let her. but she never so much as hinted that she did  in fact it was always the opposite, and I even had conversations with her school counceller about it.  she told me that Larissa was scared of her dads girlfriend and they really didnt get along,  I couldnt understand for the life of me why she would stay away and not even talk to me about it.   I guess alot of it is her fathers doing. I have no idear what is being said to her.  but I guess I cant controll that, my only fear is that the longer she is there the harder it will be for me to get her back.

Toby was also seen by the Physio from St Giles. she was really nice, but she discovered that Toby had really tight hamstrings, she explained that he would need to wear some splints to help to straighten out his legs. if the splints didnt work, then he may neeed a cast to help. she also said that he has low muscle tone, but we already knew that, Toby was almost 12 months, or 8 months corrected and he still couldnt roll over, sit up or hold his head up propperly,  I had questioned his doctors a few times before about this but I had simply been told that he will do it in his own time.  Kent and I were starting to wonder if something else was going on, it was beginning to feel like something more that just a little delay. but no one else was really concearned. 

Horrible Heraing Aids

The day we went to Australian Hearing, Kent had the time off work, I didn't want to go alone and I wanted Kent to understand what was going on as well. We waited in the waiting room, Toby was the only child, all the other people were elderly, stereotypical I know but I didn't expect to see any children, when I think of hearing aids, until now, I only ever associated them with 'old people', I mean, I knew that children can have them, and I went to school with a girl a few grades below me who had them, but really I knew nothing about them apart form what I had seen at work, and that had always involved the elderly.

I was terrified of the unknown, on the outside I was calm but on the inside I wasn't ready to admit that Toby was deaf. I didn't want him to have to have hearing aids and I didn't want to be there at all. we were ushered into a little office and we met a lovely lady who instantly took away some of my insecurity's, she was very welcoming and explained the entire process in words that we could both understand. we were about to venture into our very own uncharted territory but we were beginning to understand the basics, we were told that we have a very long exhausting road ahead of us with many, many tests and such, especially if he ends up being a candidate for a cochlear implant.       Bring It on, after all, whats another round of tests when you have already been through what Toby has. We had discussed it a few times and we were prepared to do what ever it takes to help Toby to hear,  I would sell my kidney for him to be able to hear my voice.

Having said all that, she then inserted some green goo, into his ears, the goo was left in place until it become hard and it became the beginnings of a mould for Toby's first set of hearing aids. they would be sent off for the mould to be completed. Then next thing on the agenda was to pick a colour for Toby's Aids. Who knew there were so many different colours to choose from? I have only ever seen them in boring neutral skin tones, so I was shocked to learn that they could be red, pink, green and blue. we chose a bright blue pair. I don't believe in trying to hide a disability and I had decided that if my baby had to wear something big and horrible over his ears, he was going to do it with style.

with the mould taken and the colour picked out, we were sent home with an appointment in 2 weeks to come back to get them fitted. I was feeling a little better about it all, but I still cried all the way home.
It wasn't fair, he'd already gone through so much.

Home again at long last.

With Toby finally at home things began to fall into place, I had routine of taking Aimee and Anthony to school and then taking Toby to the hospital for the doctors to check him, I spent my days trying to work out how to legally get Larissa back as I didnt really have any money to hire a lawyer, but without one, he father would not let me see her again. he had sms'd several times to tell me that Larissa did not want to see or speak to me, and I was really getting worried. As he was not willing to compromise I had made it pretty clear to him that Aimee and Anthony would not be visiting him untill I was allowed to see Larissa, I did not want to risk loosing all three of them.

I was working night shift at the hospital, and looking after Toby during the day, as Kent had managed to find work, the day we moved down. he was working full time hours but as a casual position at at window manufacturing business. he was enjoying his new work and it was looking like it could become a full time position later on. With very little sleep I would spend my spare time, playing with Toby, helping him with his physio and when he was asleep I was on the net, looking for ways around the bind we had found ourselves in. I had found a free womens' legal serivce, although they were not taking any new clients, one of the lawyeres had agreed to help me as much as she could. she sent off some letters to my ex's lawyer in an attempt to come to an arrangement. however we did not get any replys, the weeks went on and I was still not allowed to see my beautiful girl.

Aimee and Anthony were settling into school and finding it hard to adjust without their big sister. Aimee found it harder than Anthony, as she was sharing a room with larissa and often looked up to her big sister, she was a little lost, but they both were good at playing together and would take eachothers minds off it during the day, it was the nights that were the hardest with no Larissa to kiss goodnight, no cuddles, and no big sister to sleep next to.

Toby continued to have his apnoeas, when he come home he had full resuscitation equipment come home with him. he was on his oxygen and whenever we went anywyere we had to carry all the equipment, we were too scared not to. He had a few big ones but we never had to go back to the hospital, when we left we made a deal with the doctors that unless he had more than 3 in a day or began to have longer ones, or we were especially worried, we wouldnt have to go back in.  that was great, if we had to take him in with every apnoea we would be visiting the hospital on a daily basis.  So we continued on at home, praying that he would eventually grow out of it.

Toby was referrred to Early Childhood Interventuion Services (ECIS) and St Giles for physio, he was given some equipment to take home and a little chair to help him to sit up. we also had an appointment comming up to see Australian Hearing, as it was time for Toby to get his dreaded hearing aids.

It appears that as life throws horrible hurdles at you, you either become stronger and learn how to jump, or you get hit and fall over.   I was not going to fall over and Life was certainly going to go on!

The bitter sweet....

Toby stayed in the paediatric ward until April, we had found a nice new house in Austins Ferry, about 20 minutes away form the Hospital, and we were moving into it, we had just one night to move!  not an easy task, but with the help of a very special revivalist and his crew we got our whole house packed up within a few hours, leaving behind only a few sleeping bags and airbeds to spend the night before we headed back to Hobart. 

My other children,  Larissa, Aimee and Anthony had spent the Easter Holidays with their father. They lived with me but stayed with him on weekends and school holidays. Their father was not happy about us relocating to Hobart and had said so many times in letters addressed to me,   I had talked it over with the kids, and they told me many times that they wanted to stay with me, they wanted to move to Hobart so I disregarded his letters and explained to him that we had to move and they wanted to come with me.  I allowed them to visit with him over Easter, as I thought that he was reasonable, and we had a court order in effect!  oh how wrong was I!  Good Friday I received a text from him, saying that the children would be staying with him and that If I tried to contact them at all he would take out a restraining order on me!

distraught I contacted Tasmania Police, only to be told that there is nothing that they could do to help me get my children back, I was due to move house in less than a week and It was looking like I would have to leave them behind,   I was told that even though I had a court order, and even though he was breaking it, it didn't matter!  I had to still find a lawyer, and go to court to request a recovery order in order to be able to see my children again. one of the police officers suggested that I should go to pick up the kids like normal, when it was the day that I would normally pick them up. only I should organise to take a police officer with me, so that he could not accuse me of anything that I did not do, and to help keep the peace.

I did just that,  this all happened on the very same day that we were packing up our house! I called in to the local police and explained what had happened, I explained that I knew that they couldn't help me get my children back but that they would only be there to help keep the peace, they agreed and graciously came along with me,    I went and knocked on the door, I could hear his girlfriend on the phone as he was at work. she was obviously unsure of what to do and was calling him for help.   she then answered the door and immediately I got a mouth full of abuse, the police tole her to settle down, she said that my ex was on his way home from work and that we should wait for him.  funny that,  as if you were to ask child support, he does not work much.

Anyway, he arrived guns blazing, screaming and yelling at me to get off his property, the police stepped in and I waited at the car while they spoke to him, then for some miracle, he allowed the kids to come with me, the police had managed to talk some sense into him. The children walked down the driveway visually upset from what had just happened, I felt really bad for them I didn't want it to be like this but I was not about to walk away and not see them again, and if their father had his way that is exactly what would happen. although I am not sure why as he has never paid any interest in them at all, he has never been to any school or sporting events or supported them in any way and he has always been reluctant to pay his child support.

we drove away, thank full that the children were safe with me again and spent the last night in our little home in Somerset. Bright and early, the next morning, we left our home, ready to take on the world or Tasmania at least, headed for Hobart, our new home. Kent had found us a nice nearly new home to rent and we were eager to settle in and get some normality back into our lives. it was the Easter holidays still and we had a few days left before I had to find a school for the children, I asked around and found the prefect little christian school, the Headmistress welcomed us as part of the family and the children seemed willing to try it out, so they made a decision to catch the bus to the school the next day and give it a try.

Toby was slowly improving, his apnoea's were happening less often but were still particularly worrying, but the doctors had managed to find him a bed on the paediatric ward and had after some time, convinced the ward to take him. Initially the ward nurses would come round to the ICU to care for Toby, to learn how to help him when he would stop breathing. and after a few days they were happy for him to be moved to the ward. This was a big milestone for Toby's care, he would have more room to be able to play on the floor and have cuddles with his brother and sisters and he would have a window!!!  In fact he was right next to the window, it was so nice to be able to let him lie in actual sun light. he had gone so many days in his life without a single drop of sunlight, and we all thought that this was important for him.

Over the next week or so, Toby chuffed along, i got myself into a routine with the kids at home, working night shift and visiting Toby in the hospital, and we somehow managed to find time to unpack the never ending pile of moving boxes. I had some long conversations with the children regarding what had happened at their fathers, I wanted to make sure of what they wanted, and that they were feeling OK, Larissa had told me of times when he father had said some horrible stuff about me, and she was not sure what to think.  I remember saying to her,  'honey, you know me, and you know your father, what do you think happened?' she said that she didn't think that I would be that horrible and that maybe her father was lying,  then I just left her to think. they all had told me several times that they wanted to live with me, that they were disappointed about moving and worried about starting a new school, but that they were happy living with me and they didn't want that to change. I assumed I was doing the right thing and we played happy family's for a week.

Then It was time for the children to return to their fathers for the weekend. I had horrible doubts about sending them after what happened last time and after what Larissa told me that he had been telling them about me. I knew that it would not end well, but I didn't want to stop them from seeing their father. after all they had a right to see him and he should be adult enough to do the right thing. Toby was still a little unstable but we also had our old house to clean up so that we could rent it out. we decided that Kent would take the kids up to their fathers and would spent the weekend cleaning up the house as I was still too scared for both of us to leave Toby for too long. He was now on the ward and although he was never left alone, I was unsure about how the nursing staff would  help him if he was to have a big apnoea.

Kent picked the children up after school and headed straight for Burnie to drop them off as there was not much time for them to come home first, I had said goodbye as they went to school, I was terrified of what would happen but I could not stop them from going. I spent the day with Toby in the hospital and then headed home to watch a video and have a quiet night to myself.

In the morning I made it to the hospital in time for the doctors rounds, I hadn't been able to do that for a few days and I really wanted to talk to them about Toby's progress. I almost jumped up and down with glee when the doctors said that I could take him home for the day.  We were now set up in Hobart and when we were staying at Rnald McDonald House we were allowed to take Toby back there, the doctor did not see why we would not be able to have some home visits now we lived near by. I only had one problem....I didn't have any car seats. Kent had taken the car with the seat in it back to Somerset and the other seat was left up there for him to bring back on Sunday, we didn't have enough room for everything to fit into the car on moving day, and as Toby was in the hospital we didn't think we would be needing the car seat!.  what to do?

After thinking about it for a bit, I decided that this opportunity to take him home even for a day was too good to pass up so I ran to the shops and brought him a new car seat, after all his other one was only a capsule and he would soon be too bight to fit in it anyway, I got it fitted into the car, picked up his portable oxygen cylinder from home and went in to pick him up. Toby and I spent the afternoon snuggling on the couch and playing with each other, I was drowning in his smell, loving every minute with him,home alone, the only thing we missed was being able to share this with his daddy,his sisters and brother.

Like I had promised, I returned Toby to the hospital for the night but I was eager to get their early on the Sunday to pick him up for the day again, It was fantastic having him at home, we really didn't do anything apart from just lye around together, usually with me looking at him and soaking him up. I couldn't wait for his daddy to come home so that we could all be together in our new home, I knew that if Toby continued to behave, it wouldn't be long before he would be allowed to come home for real.

Kent was due to pick up the kids from their fathers at 5pm, and at 4.55pm I received a text message that once again broke my heart. It was from my ex, and it said that Larissa would be staying with him, that she apparently did not want to live with me and she did not want to talk to me at all!  and there it was, the moment I had been dreading all weekend, my little bubble had burst and I was pushed back into reality. I called Kent and told him that he would only be picking up Aimee and Anthony, as I was not there with him there really was nothing that I could do about Larissa for the moment. It was breaking my heart I couldn't understand, she was only just telling me that she wanted to stay with me. why would she lie to me? He had to be telling her more lies about me, he had to be manipulating her somehow, Larissa was the easiest of all 3 to manipulate as she always wants to make people happy, she doesn't like conflict and I was sure that this is what she was doing, she must be. Holding back my tears, I returned Toby for the night and retreated home to meet Kent, Aimee and Anthony for lots of cuddles.  

The next day, the 19th April 2009 The doctors let me take Toby home again, only this time he was allowed to stay the night, I only had to bring him in for the doctors rounds in the mornings for the next few days but apart form that he was ours! 

This was our bitter sweet homecoming.  Toby was finally allowed home, but it was not really home, Larissa was missing and we were almost 400klm away from her and the rest of our family,  but Kent, Toby, Aimee, Anthony and I were together for now and we were safe!

Feb 2010 - April 2010

Toby spent many more weeks in the ICU after that episode, he also had many more episodes. and often scared the nursing staff, doctors and both mummy and daddy. No one could trust him, and it took a long time to convince the paediatric war to accept him so that he could transfer out of the ICU environment and Begin to get some normality into his life. he wanted to play, but he was greatly restricted to his cot and a small mat on the floor, in a windowless room. it wasn't ideal for a growing baby. In March Kent and I made the difficult decision to relocate  to Hobart. we had been separated form our family for way too long, Kent would travel back and fourth for work and the other children were attending school and staying with my mother, I was only seeing them once a fortnight as the other weekend they would visit their father. it was hard on us all, and we were all at breaking point. Kent and I spoke to Toby's doctors and we were told that it might be a a good Idea to relocate so that Toby could be close to the ICU if he needed it and after such a long time, and some pretty horrible experiences we were no longer in a hurry to take him back to Burnie, we just wanted him safe.

We hunted and hunted for a rental and at the same time Kent had to prepare our home in Somerset so that we could rent it out. there was no way that we would be able to afford to pay a mortgage and rent a property in Hobart. Our money was running out and I had to go back to work so I took on some night shifts a the hospital to help us get back on track, unfortunately life still goes on and the world keeps spinning around you even when you have a sick child. oh how nice it would be if the bills would stop coming in.

In March Toby had a follow up to his hearing test. and we were totally blown away when we were told that it was again, not good. heartbroken, we listened as we were told all about hearing aids and cochlear implants, hearing tests, never ending trips to Melbourne and the road that was being mapped out for us. we never expected it, yes we both knew that It was a possibility but you never expect to find out that your child actually is deaf. we never really prepared for that outcome. and here we were propelled in to this new state of dealing with his hearing loss and the grief that we were feeling. Toby was still in the ICU and we were also trying to come to terms with moving our family. this was not a good time for any one in our little family but we pulled ourselves together and threw ourselves into learning different ways to communicate with Toby as he grows. and we prepared ourselves for more tests and the eventual fitting of hearing aids.  We decided then that we would not let anything stand in Toby's way and we were going to do anything needed to help him along.

Week leading up to Feb 28th 2010

Toby and I were home form Monash, and it appeared that things were starting to go along smoothly, He was still having his apnoea's but with his oxygen we were able to handle them better and they ar not quite as scary when you can actually do something about them. But he was still having that period at the beginning of the apnoea where his airways would close down completely, and we couldn't bag "resuscitate" him at all, we just had to wait and that time was always horrifying.
Having the oxygen at home meant juggling tubing, machines and tanks. and we never went anywhere without his bag and mask, just in case!. and the following weekend, the 29th was no exception. we were settling back into our lives again. and Larissa had her State Surf Lifesaving Championships, that was held at the Burnie beach. we all went along to cheer her along while Kent had to work. I loaded Toby and the kids up along with his oxygen and all his bits and bobs and we headed for the beach.   It was a beautiful day and Larissa did very well considering it was her first ever championships. Towards the end of the day, it all went horribly wrong. Larissa was preparing for he final event and we were trying to find her amongst the sea of little bodies in the marshaling area. Toby decided it was time he got some attention and he promptly had one of his apnoea's.  only this was bigger than normal. I whipped out his mask and started to resuss  him. there were plenty of onlookers and someone went to get help from the surf life savers who were on patrol while someone else called for an ambulance.  I managed to get Toby breathing again and as I looked around at the horror that was on everyone's faces I sighed a huge sigh of relief. That one seemed to last forever!   when the ambulance arrived Toby was fine, he was perfect in fact but the Ambos wanted to take him to hospital anyway, and the surf life savers I declined as I explained that we had just got back from Monash and we were told that we probably should get use to it and that we don't need to go to hospital with him unless he starts having too many or we are worried.  As it was not unusual for him, I wasn't overly keen to spend hours in hospital, get admitted just to be told that there is nothing they can do for him and that we would get use to it.  he was OK now, so I took him home. 
Kent arrived home not long after us, we unpacked the car and gave everyone a shower to wash off the sand collected from our day at the beach. Kent went up the shop to get some hot chips for dinner as we were both too tired to cook.
As he left, I was preparing a bottle for Toby while he was playing on the floor with Aimee.  He decided to have another apnoea. only this one was BIG,  so much bigger than all the others. When Aimee called out to me.... MUM TOBY'S GONE BLUE!  I rushed to check on him and he was unconscious, blue and clearly not breathing, i calmly got his bag and mask out and attempted to bag him, I got no response, he was still in laryngospasm, I couldn't get any air into his tiny lungs at all, I held the mask over his face and called for Larissa to fetch his pulse oximiter so that I could see more clearly what he was doing. he was still not breathing and as I was attempting to resusctiate him I was getting nowhere, it was like attempting to bag a brick wall!. his airways had completely shut down. I attached his monitor and the numbers were not good I got a reading of 32% then nothing as his peripheral pulses were non existent, his heart rate was dangerously low, I kept trying to resuscitate him as the time seamed to have stopped. this was much longer than any episode he had ever had, as Toby lay limp on the floor,  I calmly told Larissa to call the ambulance and I was relieved when they were on their way, I was beginning to be able to finally get some air into his lungs and his colour was starting to slowly return,  it had been about 8 minutes since he had stopped breathing. Kent came in the door and was horrified to see what had happened while he was picking up dinner. we both crouched over Toby, helping him to breath, desperately waiting for the Ambulance. Aimee, Anthony and Larissa all crowed around, wondering why he was not breathing yet. I had to ask them to stand back, I was really starting to panic and I didn't want to show this to them, they are all old enough to know how serious this was and the only thing that was keeping us together was that I was pretending to be so calm,  god only knows how I didn't totally loose it, I guess you just do what you have to do.   
Then the miracle... Toby started breathing on his own, he started to cry and with in no time he was looking at us like he had no idea what we were all doing and why were we all standing around him. I could breath again too. but I knew that this was not good, I knew that we were definitely going to the hospital this time and I knew that he'd be flown pretty quickly out of Burnie back to a Paediatric ICU. Toby was fine by the time the ambulance had arrived. again!   He still had his oxygen turned right up and he was still very pale, but he looking around wondering what all the fuss was about. we went back in and sure enough the retrieval team from Hobart had to come to collect him. I kissed him gently on the head as he was loaded onto the NETS stretcher and I quietly said a little prayer to myself, praying for him to stay safe.
His flight doctor and nurse both knew him well as they had flown him to Monash and had cared for him for 6 months while he was in the NICU. I knew he was in good hands  but I was still terrified for him. and I hadn't quite recovered from the days events myself. 

I sipped down a few cans of Bourbon as Kent's parents drove me to Hobart.

Monash Medical Center Jan 2010

Toby spent 2 weeks in the Moansh Paediatric Intensive Care Unit. and a further week in the childrens ward. His first night, went really well I was afraid that he would prove me wrong now that things seem like they were going to be investigated. I was horrified to arrive at his bedside to see him sprawled out on an open cot, one just like the ones they used when things were bad in the ICU in Hobart.    I was told that it was just for precaution, but seeing him like that opened some very raw wounds for me.  Toby had a rather peacefull night as I slept or rather didnt sleep on an uncomfortable recliner by his bedside. It wasnt untill about lunchtime the following day, I had gone to organise a room for me to stay at Ronald Mc Donald House, I also despirately needed to express and thought the night there was little chance of being able to in the ICU environment.  I returned to find Toby surrounded by drs and nurses and my heart sank as I was told that he had had a pretty big episode. He continued to have several episoded a day and frightened the begeevers out of the medical staff and I. I was beginning to think that we got him to hospital just in time as his episodes were more and more frequent and much more severe.  
During his stay Toby had many tests in an attempt to discover what was causing his condition. he had an Echocardiogram of his heart, an EEG and ECG, he had an MRI of his Brain and a CT of his airways and chest, many blood tests and a bronchoscopy. 
All of his tests pretty much came back normal, he had mild tracheal, laryngo malacia, where the airways are a little floppy and he had a mild stenosis. his slppe study was a little more revealing showing that he was severely lacking of oxygen when he was asleep, he was having both obstructive and central apnoeas and his respiratory paediatrician decided to put him on oxygen at home, the thought was that he might stop having so many apnoea episoded if he was getting the oxygen he needed.   it wasnt so much because his oxygen levels were always low, but that when he would have even the slightest pause in his breathing Tobys oxygen levels or 'sats' would drop horribly, as he had no reserves and then he would have trouble picking up form there. 
With that in mind and some training how to use a bag and mask for resuscitation we were allowed to take Toby home from Melbourne. The air ambulance came to pick us up and we were flown back to Tassie. Toby spent another night in the burnie hospital while his home oxygen was organised and then it was up to us,  we were so glad that he was home, but we wernt taking any chances with him,  his apnoeas had slightly improved but he could still scare us with some pretty big ones,  I think that we were just learning how to handle them a bit better.