Oh My Lord! Up to now I never gave carers a second thought. Actually I didnt even know what a 'carer' was. Now I see a carer a mile away and I instinctively know their routine, I can see if they've had not much sleep, and I totally understand why they look bedraggled. Its an effort just to have a shower most days because your too busy cleaning your dependants. I used to be scared of even looking at them in the shops because I didnt know anything about illness or that sort of responsability. Now I have the upmost respect for these amazing people and the strength they show everyday, with complete understanding and empathy for their family members in need.
Its the hospital visits that are the hardest. Its ok if people treat you respectfully, but if one person who can save your kids life crosses a line...it can be painful. Ive just gone through this growing pain of being a carer, where I have to make a choice. Do I want to focus on getting my kids help or do I want to be offended and distracted. With the right focus I can keep it up, with the wrong one I can have sleepless nights dreading my next visit to a cold room where I am nearly completely misunderstood. So Ive chosen the right focus - ignore all those who get in my way! Accept they are there for the long hawl, but their personal opinions dont matter one iota. Now hospital isnt so dark after all. Today for example we had a CT scan and the ladies were so lovely, it was hugs all round when we left and one walked me to my car. That is the result of positive strong focus.
The Morquio syndrome had me doing all sorts of things since my last entry. We visited Professor Sillence, a specialist in a nearby state and recieved a lot of new information on their development. It was a shock at first to realise your kids wont be immune to the symptoms. I then quit my job to take care of them as we were told the situation was quite grave. The kids have benefited so much by having me here in the arvos and nighttime and we are very content. Charlie's behaviour is doing amazing in regards to confidence and completeing tasks. The twins are less sick with fevers and flu, with reduced biting incidences from Andrew and less hitting from Michael.
Since the trip to the eastern states Ive been getting ready for their first fusion on the cervical area of the spine. They will be putting a metal plate underneath the brain after removing a few bits of bone. They attach this to a bone graft from their leg (I think) and then they put 5 or so screws into the spine beneath. Then they are put into visor orthosis for 3 months or so, which is a plastic cast that goes around the forehead all the way to the stomach, with a little hole for their face. Ive chosen blue casts with cute designs so the colour of their blue eyes will be striking, to melt people hearts in case people are afraid of them (yep it could happen) and ive resown recycled clothes from the thrift store, so they wont have wear the hospital gowns while they are in the ward. Its amazing that noone at the ward tells you they wont fit into their usual clothes because the cast add an extra cm to their head, it the Morquio and MPS families that told me on facebook nearly 7 months ago. Without that knowledge I would have been in a panic with hardly any clothes for them to wear.
Yes thankyou MPS people of the world, you are by far the most angelic group of people with all the right information for me anytime I need it. Without you I dont know where Western Australia would be in understanding this disease. You all dont know how much you mean to me, I love you all!
Wednesday, July 27, 2011
Friday, December 17, 2010
A Hard Pill To Swallow
Two weeks ago we visited the hospital and saw our spinal surgeon and a spinal doctor. We only had mikey with us and he wasn't impressed with the surgeon or her assistant. He just sat there and hoped they wouldn't go near him. Its like he knows who she is. She did say before his surgery that children who go under her knife don't like her, but I think it has more to do with the fact that she doesn't know how to bond with children. She didnt even get up from her chair to play with him. She did touch his feet though and said how big they were and commented ' oh your going to be tall, aren't you?' From that moment on she lost the focus of us. We couldnt believe she said that. She started talking about the surgery and I couldn't help but open my mouth and say 'You do realise don't you that the babies are going to be dwarfs?' She just explained that it was just a passing comment. I don't like her very much if she hasn't the decency to educate herself about their disease before making sensitive comments.
She went on to explain that in 2011 Michael would have to have his spine fused and Andrew will have his spine cut away to make room for the spinal cord. It wasn't what I went there to hear. Thinking of my babies stuck in a halo is pretty horrible not only for them but for us too....I don't know how we are going to manage them and with us both working we really need the support of family. Don't forget we have two other children who need our love and care as well.
After reading a hurtful email from my twin sister, I started getting down for the first time since the pregnancy. I stopped eating and I'm still struggling to eat a banana....for lunch. I don't think Ive lost my muscle because I still weigh roughly the same, but it must be in my arms cos I dont fit into my new work pants and they are a size 8. I have to keep a belt on to hold them up and my work mates are starting to get concerned. I have a solution to that - my auntie in law and my mother in law are trying to push me and my partner to the top of a waiting list to see a psychologist. They are involved high up in Communicare and they can access all sorts of assistance for us....they are even planning to lodge an application for HOME HELP!!
Home help is going to be awsome because taking shifts in hospital for breakfast, lunch and tea is so difficult. I got so worn out I couldn't hold my arm up to type at work. Plus Charlie goes to school everyday next year. I dont see how we can be in 2 or 3 places at once.
Something more shocking happened this week... I took Andrew to the doctor at hospital for his first checkup. We pinned him down and looked into his mouth. The doctor said look here and boy his throuat looked so different from normal. It was a small hole surrounded by lots of deposits of skin and the hole was struggling for air. The doctor and me didnt talk about it. In fact I didn't think about it until that night at work when I realised the implications of what I saw. I cried alot that night and didnt sleep much. My partner remained aloof and got irritated when I tried to snuggle into him for reassurance. LOL I never snuggle! Poor Andrew living with this for a year and a half and i've been ignoring the fact that he snores, has trouble swallowing food and can breathe better when he falls backward in our arms. I emailed the doctor and asked is it life threatening? He replied yes if he gets a bad flu or virus. So I thought one baby Michael was in a serious situation but turns out that little Andrew is even more so.
She went on to explain that in 2011 Michael would have to have his spine fused and Andrew will have his spine cut away to make room for the spinal cord. It wasn't what I went there to hear. Thinking of my babies stuck in a halo is pretty horrible not only for them but for us too....I don't know how we are going to manage them and with us both working we really need the support of family. Don't forget we have two other children who need our love and care as well.
After reading a hurtful email from my twin sister, I started getting down for the first time since the pregnancy. I stopped eating and I'm still struggling to eat a banana....for lunch. I don't think Ive lost my muscle because I still weigh roughly the same, but it must be in my arms cos I dont fit into my new work pants and they are a size 8. I have to keep a belt on to hold them up and my work mates are starting to get concerned. I have a solution to that - my auntie in law and my mother in law are trying to push me and my partner to the top of a waiting list to see a psychologist. They are involved high up in Communicare and they can access all sorts of assistance for us....they are even planning to lodge an application for HOME HELP!!
Home help is going to be awsome because taking shifts in hospital for breakfast, lunch and tea is so difficult. I got so worn out I couldn't hold my arm up to type at work. Plus Charlie goes to school everyday next year. I dont see how we can be in 2 or 3 places at once.
Something more shocking happened this week... I took Andrew to the doctor at hospital for his first checkup. We pinned him down and looked into his mouth. The doctor said look here and boy his throuat looked so different from normal. It was a small hole surrounded by lots of deposits of skin and the hole was struggling for air. The doctor and me didnt talk about it. In fact I didn't think about it until that night at work when I realised the implications of what I saw. I cried alot that night and didnt sleep much. My partner remained aloof and got irritated when I tried to snuggle into him for reassurance. LOL I never snuggle! Poor Andrew living with this for a year and a half and i've been ignoring the fact that he snores, has trouble swallowing food and can breathe better when he falls backward in our arms. I emailed the doctor and asked is it life threatening? He replied yes if he gets a bad flu or virus. So I thought one baby Michael was in a serious situation but turns out that little Andrew is even more so.
Monday, December 6, 2010
Saving Michael's Life
Its hard to describe what it was like at PMH. We had 4 children. Charlie came home from his dad's on Monday arvo after school. Tameka, my step daughter came home on Wednesday after school and Mikey had a twin brother who couldnt stay with us because I had to work evenings and my partner had to work mornings. It was a crazy juggle trying to provide Michael with the care he needed while still making sure all kids were looked after and loved. If it wasn't for my partner's family we would have all suffered alot. But Marion and Brendan held us together with their support and encouraging words and I will be eternally grateful to them.
Michael was afraid of the nurses and the doctors. Everytime they walked into the room he cried and I had to assist when they did ops and tests. After an mri, blood work and x rays they said that Mikey did have a narrow hole where the spinal cord goes, far too narrow for normal and his c1 vertebrae had formed far to forward which is why the spinal cord was pinched when he hit his head and hence was paralysed. By this point his body was getting back to normal, but his left side was not moving much at all. They told me they would have to operate and remove the bone that was pressing on the cord or else he could die.
The day I was asked to sign papers for the operation I was a mess. There were times that i had to hide behind the curtains or behind doors because as soon as he saw me he cried. I had been spending the night at hospital sleeping in a chair and still working 5 hours a night while my partner came in to look after Michael. That day I had held Michael for 4 hours straight because he wouldnt let me put him down or let me sit in a chair with him, plus I had to manoever the drip and the nurses were to busy to notice I was falling apart. To be honest that day one nurse pretty much ran away, she didnt want to have anything to do with his crying. The doctor came with the papers and I said 'Take him!' Then I hyperventilated and bawled my eyes out. I was so dissapointed that I had lost my control but my arms hurt so much and I was so tired of handling him by myself. Once I could breathe I grabbed Mikey again and walked with the surgeon to sign the papers. A nurse followed and offered to take Mikey so me and the doctor could talk. She told me that she was really good at what she does and that she does it every week on people but there was a chance that he could be paralysed from the kneck down or die. I signed the go ahead because if we didnt do it he could die when he got older just from a little knock.
I went back to the room and the nurse who had conveniently ran away before was holding him and he was fast asleep! I was thinking thankgod! They must have told her what was wrong with him because she had changed her attitude totally and she was more in tune with us from that point on. I told the nurses I couldnt stay at the hospital anymore because I needed a rest at night and they said that was fine, but my sister, Marion and Brendan visited him whenever they could while he was alone.
His spinal surgery was on Thursday and he was such a good mood when I took him into theatre. As soon as he chirped and smiled everyone fell in love with him. I kissed him and said goodbye. I didn't cry because I knew he would be better afterwards and God wasnt going to take him from us. I had so much faith in him to be strong too. I said to Damian that we shouldn't wait in hopsital in the Friendship room because the other couples looked too sad and that wasnt going to help us, so we went out for lunch and drank champagne. We were happy because Mikey was going to be well soon and everyone had prayed with thanks to god for taking care of him. I was adamant that people pray that way instead of praying with sadness.
We got a phone call 3 hours later. They said Michael was in recovery and he didnt even need a respirator, he was doing fine. We raced back and he slowly woke up out of his daze but every time he saw me he cried for a cuddle but it was hard because my body was worn out and I couldnt hold him for more than 1 minute. So I hid behind the hospital machines and watched as his Dad cuddled and talked to him and joked about Mummy having to hide to keep him calm.
Michael had fasted nearly the whole time from Sunday to Thursday so an hour after the operation he ate so much food the doctors were impressed. Again the following morning and every mealtime after he couldn't get enough food into his belly. His body was losing its paralysis and he was making headway in crawling and getting back to normal. Then we found out that not only did he have 3 types of displacia, he had a rare genetic bone diease called Mucopolysaccharidosis (MPS).
He stayed in hospital for a week after the operation to find out which type of MPS he had and also to test his twin brother, Andrew. During this time Andrew had been staying with family and I had seen him only a handful of times for a hug. Little did I know he had the same rare bone disease and with lack of a proper routine was begining to get dark around the eyes, very irritable and dizzy from too much walking. I didnt realise that these were symptoms of MPS but I knew the sooner we got Andrew home the better he would be.
Before we got discharged we learnt that both boys had MPS IV but we are currently wating to see if its A or B.
Michael was afraid of the nurses and the doctors. Everytime they walked into the room he cried and I had to assist when they did ops and tests. After an mri, blood work and x rays they said that Mikey did have a narrow hole where the spinal cord goes, far too narrow for normal and his c1 vertebrae had formed far to forward which is why the spinal cord was pinched when he hit his head and hence was paralysed. By this point his body was getting back to normal, but his left side was not moving much at all. They told me they would have to operate and remove the bone that was pressing on the cord or else he could die.
The day I was asked to sign papers for the operation I was a mess. There were times that i had to hide behind the curtains or behind doors because as soon as he saw me he cried. I had been spending the night at hospital sleeping in a chair and still working 5 hours a night while my partner came in to look after Michael. That day I had held Michael for 4 hours straight because he wouldnt let me put him down or let me sit in a chair with him, plus I had to manoever the drip and the nurses were to busy to notice I was falling apart. To be honest that day one nurse pretty much ran away, she didnt want to have anything to do with his crying. The doctor came with the papers and I said 'Take him!' Then I hyperventilated and bawled my eyes out. I was so dissapointed that I had lost my control but my arms hurt so much and I was so tired of handling him by myself. Once I could breathe I grabbed Mikey again and walked with the surgeon to sign the papers. A nurse followed and offered to take Mikey so me and the doctor could talk. She told me that she was really good at what she does and that she does it every week on people but there was a chance that he could be paralysed from the kneck down or die. I signed the go ahead because if we didnt do it he could die when he got older just from a little knock.
I went back to the room and the nurse who had conveniently ran away before was holding him and he was fast asleep! I was thinking thankgod! They must have told her what was wrong with him because she had changed her attitude totally and she was more in tune with us from that point on. I told the nurses I couldnt stay at the hospital anymore because I needed a rest at night and they said that was fine, but my sister, Marion and Brendan visited him whenever they could while he was alone.
His spinal surgery was on Thursday and he was such a good mood when I took him into theatre. As soon as he chirped and smiled everyone fell in love with him. I kissed him and said goodbye. I didn't cry because I knew he would be better afterwards and God wasnt going to take him from us. I had so much faith in him to be strong too. I said to Damian that we shouldn't wait in hopsital in the Friendship room because the other couples looked too sad and that wasnt going to help us, so we went out for lunch and drank champagne. We were happy because Mikey was going to be well soon and everyone had prayed with thanks to god for taking care of him. I was adamant that people pray that way instead of praying with sadness.
We got a phone call 3 hours later. They said Michael was in recovery and he didnt even need a respirator, he was doing fine. We raced back and he slowly woke up out of his daze but every time he saw me he cried for a cuddle but it was hard because my body was worn out and I couldnt hold him for more than 1 minute. So I hid behind the hospital machines and watched as his Dad cuddled and talked to him and joked about Mummy having to hide to keep him calm.
Michael had fasted nearly the whole time from Sunday to Thursday so an hour after the operation he ate so much food the doctors were impressed. Again the following morning and every mealtime after he couldn't get enough food into his belly. His body was losing its paralysis and he was making headway in crawling and getting back to normal. Then we found out that not only did he have 3 types of displacia, he had a rare genetic bone diease called Mucopolysaccharidosis (MPS).
He stayed in hospital for a week after the operation to find out which type of MPS he had and also to test his twin brother, Andrew. During this time Andrew had been staying with family and I had seen him only a handful of times for a hug. Little did I know he had the same rare bone disease and with lack of a proper routine was begining to get dark around the eyes, very irritable and dizzy from too much walking. I didnt realise that these were symptoms of MPS but I knew the sooner we got Andrew home the better he would be.
Before we got discharged we learnt that both boys had MPS IV but we are currently wating to see if its A or B.
Sunday, November 14, 2010
Hospital
I said 'Lets take him to the doctor, theres something not right with him.'
I walked to our bedroom and layed Mikey down on the bed, while I got dressed. Everything turned into a slow motion clip from a horror movie as I put my head through a t-shirt and looked at Mikey. He just layed there, not moving....not crying....just looking at me. His eyes looked at me and said, 'Mum notice me!' It was then I realised he wasnt moving because his body was paralysed. It had to be the only reason because Mikey was such a robust child, he would have got off the bed by now. I called D in and told him we had to leave NOW! 'Where's my flippin thongs, I can't find my THONGS!!!'
The worst thing in an emergency is getting dressed and it feels like hours when your trying to get your clothes on!
We got 3 kids into the car and couldnt find a doctor because it was Sunday and of course none were open. So we headed to hospital. Mikey had stopped crying since I picked him up and now chirped to us from his baby seat. His head was still tilted one way and he didnt want any water. He usually drank like a sailor so that was a little disconcerting. Every now and then he would blow raspberries, one of his favourite games and I felt he was trying to lighten the mood which was pretty grim by that point. He wasnt grabbing at the water bottle and still wasnt lifting his arms or legs.
We walked into the Fremantle hopital emergency room and Mikey was still limp. They soon realised that something was seriously wrong and said there could be blood on his brain, so we would have to do a CT scan. I held mikey tight and kissed his forehead while they put the drip in for his anaesthetia. He was so brave and hardly screamed. When he passed out I followed the trolley to the CT room and began to cry. I had been so strong up to that point and now realised that Mikey was in trouble. My partner was taking the kids to their grandmothers so I didnt have anyone to hold...only mikey and now he was out of it and I was left with my own pain. I didnt want Mikey to see me upset later so I tried to remain calm.
They came back a few hours later and said there was no problems with his brain but there was a deformity which had been there since birth and that meant doing another CT scan to see further down underneath the brain stem. His dad had arrived and we held onto eachother as he was wheeled away again. I was afraid he would die under the anaesthatic so I kept a careful watch on Mikey and so did his dad.
Princess Margaret Hospital was receiving the CT scans and advising the doctors on what to do. At 5 pm we were sent by ambulance to PMH and by midnight we were in a ward. Up to that point I had been laying next to Mikey so our noses touched and he would smile and talk to me until he cried and got impatient. It was a juggle of comfort the whole day, but as soon as we got to the ward he was in a crib so there was no cuddling in bed anymore.
I walked to our bedroom and layed Mikey down on the bed, while I got dressed. Everything turned into a slow motion clip from a horror movie as I put my head through a t-shirt and looked at Mikey. He just layed there, not moving....not crying....just looking at me. His eyes looked at me and said, 'Mum notice me!' It was then I realised he wasnt moving because his body was paralysed. It had to be the only reason because Mikey was such a robust child, he would have got off the bed by now. I called D in and told him we had to leave NOW! 'Where's my flippin thongs, I can't find my THONGS!!!'
The worst thing in an emergency is getting dressed and it feels like hours when your trying to get your clothes on!
We got 3 kids into the car and couldnt find a doctor because it was Sunday and of course none were open. So we headed to hospital. Mikey had stopped crying since I picked him up and now chirped to us from his baby seat. His head was still tilted one way and he didnt want any water. He usually drank like a sailor so that was a little disconcerting. Every now and then he would blow raspberries, one of his favourite games and I felt he was trying to lighten the mood which was pretty grim by that point. He wasnt grabbing at the water bottle and still wasnt lifting his arms or legs.
We walked into the Fremantle hopital emergency room and Mikey was still limp. They soon realised that something was seriously wrong and said there could be blood on his brain, so we would have to do a CT scan. I held mikey tight and kissed his forehead while they put the drip in for his anaesthetia. He was so brave and hardly screamed. When he passed out I followed the trolley to the CT room and began to cry. I had been so strong up to that point and now realised that Mikey was in trouble. My partner was taking the kids to their grandmothers so I didnt have anyone to hold...only mikey and now he was out of it and I was left with my own pain. I didnt want Mikey to see me upset later so I tried to remain calm.
They came back a few hours later and said there was no problems with his brain but there was a deformity which had been there since birth and that meant doing another CT scan to see further down underneath the brain stem. His dad had arrived and we held onto eachother as he was wheeled away again. I was afraid he would die under the anaesthatic so I kept a careful watch on Mikey and so did his dad.
Princess Margaret Hospital was receiving the CT scans and advising the doctors on what to do. At 5 pm we were sent by ambulance to PMH and by midnight we were in a ward. Up to that point I had been laying next to Mikey so our noses touched and he would smile and talk to me until he cried and got impatient. It was a juggle of comfort the whole day, but as soon as we got to the ward he was in a crib so there was no cuddling in bed anymore.
Friday, November 12, 2010
The Beginning
Mikey didn't stop crying that morning, and the pillow over my head didnt block it out. It was my chance for a sleep in that I had been fighting over for 3 weeks. Life was so busy, 4 kids, two schools, two cars rarely togerther in the garage. Both of us working to make ends meet and both with ex partners to work around, our life was an amazing achievement but full of hard work. Thats what I was thinking when I finally got up and went to see what was wrong with Mikey.
I walked into the kitchen and saw D was holding him. I quickly picked him up and felt suddenly he wasn't himself. The more I calmed him down and talked to him I realised he wasnt moving like normal and his neck leant to one side. I told D something wasnt right and suddenly regretted putting Mikey to sleep the night before.
The night before...
I went to the video shop at 7.09 and while I was away, Mikey had one his usual tantrums at bathtime and had eventually thrown his head backwards onto the floor in his room. This was a usual occurance but this time he wouldnt stop crying. I got home and grabbed him out of his cot, while D told me what had just happened.
It was past bed time now and I knew he was tired. I gave him panadol as he seemed to be in a little bit of pain and turned him on his stomach. I stroked his spine and rubbed his back to soothe him. I could see he has some nerve situation going on.. his leg would shake when held above the body. I ask D what he thought about it, and we decided that he was probably exhausted from the unusual amount of walking practise we had done that day.
I massaged him for about 10 mins and saw he was falling asleep. I carried him to his cot and we put both the boys to sleep. He cried 30 mins later and I went in to rub his back again. He hadnt moved from the stomach position. He quickly fell asleep again.
I walked into the kitchen and saw D was holding him. I quickly picked him up and felt suddenly he wasn't himself. The more I calmed him down and talked to him I realised he wasnt moving like normal and his neck leant to one side. I told D something wasnt right and suddenly regretted putting Mikey to sleep the night before.
The night before...
I went to the video shop at 7.09 and while I was away, Mikey had one his usual tantrums at bathtime and had eventually thrown his head backwards onto the floor in his room. This was a usual occurance but this time he wouldnt stop crying. I got home and grabbed him out of his cot, while D told me what had just happened.
It was past bed time now and I knew he was tired. I gave him panadol as he seemed to be in a little bit of pain and turned him on his stomach. I stroked his spine and rubbed his back to soothe him. I could see he has some nerve situation going on.. his leg would shake when held above the body. I ask D what he thought about it, and we decided that he was probably exhausted from the unusual amount of walking practise we had done that day.
I massaged him for about 10 mins and saw he was falling asleep. I carried him to his cot and we put both the boys to sleep. He cried 30 mins later and I went in to rub his back again. He hadnt moved from the stomach position. He quickly fell asleep again.
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