We are here and waiting room full of hungry tired kids. Denver is being a real champ and just playing why he waits, although he does remind us of his hunger often, but far enough. Waiting is hard.
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It is friday (I think) and I am sittin next to Deni as he goes off to sleep, I have a raging headache that i have had for ages, but at least I don't have leads coming out it. It is amazing watching the numbers change on the machine they tell us what the pressure is in his brain, one has to wonder how that is possible and who on earth volunteered for the first one. It is an addiction watching the numbers go up and down, I find myself looking at him and seeing what he is doing then looking at the number. He has great stats during the day most of the time in the normal range but when he goes to sleep it's a different story. There is nothing like being woken up by an alarm on the machine that is attached to your son's brain, there's a flashing orange light a loud awful noise and the nurse comes running in. And we just watch the numbers watch deni and see what happens. It's amazing what kids can sleep through. He just keep sleeping and they said that when his pressure gets high he wakes himself up slightly which lowers the pressure and then goes back to sleep, they think he probably has a headache most nights but is so used to it he sleeps through it. He is so cheeky with the nurses. I think he thinks it's not to bad here he gets to watch telly, has his own remote and can choose the shows, food gets brought to him on a regular basis and he gets to choose it off a menu, mum is with him all day and night and he gets visitors who bring him surprises. What more could a four year old want.
Wednesday, January 26, 2011
Monday, January 24, 2011
The thought of getting ready for hospital
So I have to get us ready for hospital which means I have to start planning and I hate planning. So I have written a list of what we need to take it looks like were going on a vacation pj's, books, DVDs, pillow, blanket and everything else we need. Looking at the list we must be going for ages but it's only 2 nights. But they will be two long nights. The fear is the unknown. How will he go with the general? will there be any problems in surgery? will he wake up ok and not full of fear? Will he be ok with the leads and monitors? Will he still trust me after we do this? Will I be ok? Will I still breathe when he is in surgery? Will I cry when I see him? Will I be strong? Will I survive this? I am scared and this surgery is tiny compared to the one he is going to have. I have a list and that is supposed to make me feel prepared for this trip. I have organised the kids. I am organising my husband. Then I have to organise myself.
Friday, January 21, 2011
Last night we danced.....
Last night we danced and it was lovely. We made an unplanned stop at the RSL to have dinner with Matts pa and there was great music. So after dinner the kids and I got to some serious dancing. It was fantastic just to dance and have fun with the kids. Towards the end of the night I sat down to have a breather and was watching the kids dance when I was watching Deni dance and all of a sudden I thought this is the last time we will be out together as a family before they change him and touch his head. What a strange thought at a strange time. On Thursday after eye u/s, eye tests and holding my son down screaming for the eye drops and then seeing the neurosurgeon we where told that they want to cut a hole in denvers skull put some special monitors on his brain and have the monitors connected to leads that come out of his head that are then connected to a machine that will read his brain pressure. We have to be there for 2 nights 3 days. It's freaky. He will have leads coming out of his head attached to a machine and be awake for 3 days with that. Heaven help us. How will we do that? He is four not really the laying still kind. We are doing this on Thursday, yep Thursday. What if they don't get the answers they need? What if some thing goes wrong? How will we do this? Some people have said why does he need that? Why don't they just do the big op? Why do we have to do this? I feel stupid saying cause they said so. It was only after I started telling people and people starting questioning the need for it that I started to get confused. I thought I totally understood it and why it was needed when talking to the neurosurgeon and was only once I walked out and started talking that the lines got blurry. I know with in me that it is needed. But his head I am so sad that they will mark him, cut him change him. Will we be ok we have to be don't we?
Monday, January 17, 2011
It is a dark day today and I don't know why.........
Today is shit just shit. I don't know why but today is dark and I wish it wasn't. there is no big reason for today to be dark. Deni and I are exhausted from yesterdays app. but why do I feel so dark on the inside??
I feel like cranio is taking over my life just this week we have 4 app's this week two last week and more next week and it just keeps going. Is this never going to end???We wait for letters in the mail for new appointments, we wait for phone calls, we wait for headaches, we wait for questions to be asked that we can't answer, we wait for answers to be given knowing they won't ever really come, we wait for deep sleep, we wait for a normal day with cranio hanging over our heads we wait and we wait but try not to let it take over our lives but we are always waiting for something. It is a heavy burden to carry and I am exhausted. We are lucky we only live an hour and a bit from the hospital but it feels like going to mars where they speak a different language and you can't quiet understand it and what they are saying, it's a different planet. They poke and prod your baby and you sit holding their hand saying it's ok it will be ok, but will it????
They say yep there is something abnormal at the back of his eyes but we don't know what it is? It's not effecting his vision, but it's abnormal and we can't figure it out. Go home don't worry but come back in three weeks for another day of never ending tests to wait and see if they have changed and see if we have an answer.
I will wait because I have no choice but what do you do why waiting?
We have more appointments this week I don't know if I can do it, put on clothes go holding my sons hand while they talk about every thing that's wrong and what we need to do or not do. No one knows the answers yet and that's so frustrating, I wonder if they ever will know all the answers.
I am losing the energy to function cranio is taking over my life and even my dreams. But there is joy. My son is alive and there is some solutions to his medical problems and we have a good life.
I feel very alone in this, normally when some thing happens I find a support group and I meet with them and we sit and talk and we are safe with our feeling and emotions and we are supported. With this cranio I feel isolated and distant. I want my house to run smoothly but it feels stuck stuck in chaos. Tomorrow will be better, it has to be.
I feel like cranio is taking over my life just this week we have 4 app's this week two last week and more next week and it just keeps going. Is this never going to end???We wait for letters in the mail for new appointments, we wait for phone calls, we wait for headaches, we wait for questions to be asked that we can't answer, we wait for answers to be given knowing they won't ever really come, we wait for deep sleep, we wait for a normal day with cranio hanging over our heads we wait and we wait but try not to let it take over our lives but we are always waiting for something. It is a heavy burden to carry and I am exhausted. We are lucky we only live an hour and a bit from the hospital but it feels like going to mars where they speak a different language and you can't quiet understand it and what they are saying, it's a different planet. They poke and prod your baby and you sit holding their hand saying it's ok it will be ok, but will it????
They say yep there is something abnormal at the back of his eyes but we don't know what it is? It's not effecting his vision, but it's abnormal and we can't figure it out. Go home don't worry but come back in three weeks for another day of never ending tests to wait and see if they have changed and see if we have an answer.
I will wait because I have no choice but what do you do why waiting?
We have more appointments this week I don't know if I can do it, put on clothes go holding my sons hand while they talk about every thing that's wrong and what we need to do or not do. No one knows the answers yet and that's so frustrating, I wonder if they ever will know all the answers.
I am losing the energy to function cranio is taking over my life and even my dreams. But there is joy. My son is alive and there is some solutions to his medical problems and we have a good life.
I feel very alone in this, normally when some thing happens I find a support group and I meet with them and we sit and talk and we are safe with our feeling and emotions and we are supported. With this cranio I feel isolated and distant. I want my house to run smoothly but it feels stuck stuck in chaos. Tomorrow will be better, it has to be.
Thursday, January 13, 2011
One test = two tests = three tests = ???????? tests
We had our next lot of app. on Monday and what a big day. First was the neurophcologist she is lovely. Denver had to do an IQ test and some other tests to see where he is at at the moment so we can keep track of his progress over time. It is so hard to sit there and watch you kid do all these tests and answer all these questions and I had to be perfectly still, it is so hard as a parent not to help. The test was really hard work for Deni and we had breaks every 20-30 minutes where we could go for a walk have a drink unwind before the next session. Deni got tired so it was hard to keep him going but he did it. The best thing was we got the results nearlly straight away which is so much better than having to wait for them. Deni has above average IQ for his age and his speech is better than normal for his age. So that was a relief and lovely to hear. Denver is displaying signs of brain pressure with the way he acts, gets restless, has trouble finding the information in his brain, trouble finding the right word, not being able to scan pictures and not being able to concentrate. There was a long list but thats enough. So her findings match the other dr's findings that there is pressure on the brain affecting his every day life. She also spoke about how most children do get better after the surgery once there is no more pressure on their brain with the problems that she found in Deni. So that was very reassuring to hear.
Next was the eye test. Deni did very well on his test for vision he has perfect sight. Yeh!!!!!!
They then put drops in his eyes which after about ten minutes allow them to see the nerves at the back of the eye. They were bloody alwful. They stung deni's eyes and then they make your vision go all blurry so you can't see any thing and cause deni was so tired it was hard to take. She took a long time looking in his eyes and I just thought it was because deni started to fall asleep. But no. She could see that the nerves were elevated which means there is pressure on the brain so she said that was fine and what they were expecting and matches what all the other dr's thought, but the thing that was worring her was that on one eye Denver had some lumps/bumps/growths on one of his nerves which shouldn't be there. She was worried and couldn't figure out what they were. She then gave us a referal to get an eye ultrasound as soon as possible today if we could and then go back to see her. So matt and I walk out going what just happened? What??? We started double checking with each other to make sure we had heard the right thing. Yep we had. Ultrasound could not fit us in till the following monday so we have to wait a week, while talking to the receptionst it dawns on me how do they do an eye ultrasound? So I am told they simply put gel on the eye ball and then the ultrasound probe just like any other ultrasound. I am floored, he will be awake for this. I hate eye drops let alone gel and then a probe. How the hell are we going to get him to do that? I don't know if I could do it let alone a 4yr old. The thought just freaks me out. How do I even begin to explain that to Denver? What???
Matt and I are quiet on the way back to the holiday house where we are staying with my family. I don't think we can believe that we have to do more tests and they have now found some thing else to worry about. Why can't we just got to our app. and be told yep thats fine or thats excatly what we expected, why are there more things to be worried about?
We don't talk to any one about it till the next day and I find myself being as I was before strangly sterile, unattached, cool, calm and collected. It's such an opposite to what I feel on the inside. It is a curse and a blessing to be surronded by people some times you long for company but most of the time I want to be alone and thats pretty hard when you are living with 12 other people. I go about telling people that need to know. I am so calm. I hold it together. I find myself so weird at times like this.
I am yet to find my safe person who I can tell my thoughts to about this and be completly honest. I haven't found that person I can fully relax with yet. I feel very alone in the way I feel at times. I often feel like we have been given a ticking bomb. I need to cry about this but I can't. I don't know why I can't. I feel like people expext me to just tell them the latest news/tests and then keep going like nothing as happened. I do that on the outside but on the inside it gets dark and I don't know what to do. Where do I go to fall apart? Where do I go where it will be ok to fall apart and no one will expect me to hold it together? Am i alone in this???????????
Next week is going to be another big week with the eye ultrasound, the results on Monday and then the neuro surgen on Thursday. I am praying and hoping for no more suprises and to find my person.
Next was the eye test. Deni did very well on his test for vision he has perfect sight. Yeh!!!!!!
They then put drops in his eyes which after about ten minutes allow them to see the nerves at the back of the eye. They were bloody alwful. They stung deni's eyes and then they make your vision go all blurry so you can't see any thing and cause deni was so tired it was hard to take. She took a long time looking in his eyes and I just thought it was because deni started to fall asleep. But no. She could see that the nerves were elevated which means there is pressure on the brain so she said that was fine and what they were expecting and matches what all the other dr's thought, but the thing that was worring her was that on one eye Denver had some lumps/bumps/growths on one of his nerves which shouldn't be there. She was worried and couldn't figure out what they were. She then gave us a referal to get an eye ultrasound as soon as possible today if we could and then go back to see her. So matt and I walk out going what just happened? What??? We started double checking with each other to make sure we had heard the right thing. Yep we had. Ultrasound could not fit us in till the following monday so we have to wait a week, while talking to the receptionst it dawns on me how do they do an eye ultrasound? So I am told they simply put gel on the eye ball and then the ultrasound probe just like any other ultrasound. I am floored, he will be awake for this. I hate eye drops let alone gel and then a probe. How the hell are we going to get him to do that? I don't know if I could do it let alone a 4yr old. The thought just freaks me out. How do I even begin to explain that to Denver? What???
Matt and I are quiet on the way back to the holiday house where we are staying with my family. I don't think we can believe that we have to do more tests and they have now found some thing else to worry about. Why can't we just got to our app. and be told yep thats fine or thats excatly what we expected, why are there more things to be worried about?
We don't talk to any one about it till the next day and I find myself being as I was before strangly sterile, unattached, cool, calm and collected. It's such an opposite to what I feel on the inside. It is a curse and a blessing to be surronded by people some times you long for company but most of the time I want to be alone and thats pretty hard when you are living with 12 other people. I go about telling people that need to know. I am so calm. I hold it together. I find myself so weird at times like this.
I am yet to find my safe person who I can tell my thoughts to about this and be completly honest. I haven't found that person I can fully relax with yet. I feel very alone in the way I feel at times. I often feel like we have been given a ticking bomb. I need to cry about this but I can't. I don't know why I can't. I feel like people expext me to just tell them the latest news/tests and then keep going like nothing as happened. I do that on the outside but on the inside it gets dark and I don't know what to do. Where do I go to fall apart? Where do I go where it will be ok to fall apart and no one will expect me to hold it together? Am i alone in this???????????
Next week is going to be another big week with the eye ultrasound, the results on Monday and then the neuro surgen on Thursday. I am praying and hoping for no more suprises and to find my person.
Saturday, January 8, 2011
testing begins....
31st December 2010
It's new years eve and everyone wants to celebrate the end of one year and the new beginning of what everyone hopes will be a better year. I am scared of what the new year will bring for our family. We had a shocked of a year in 2010 with Matt having his heart attack, me trying to get better after being unwell for a while and Denver being diganosied with cranio. So why won't I look forward to the new year? Because every day brings us closer to the day that we hand denver over to the surgens. I know he needs the surgery but it makes me scared and sad that we might lose him as he is, but there is no option, I know.
Denver headaches have settled down at the moment but his behaviour is hard, it is exhausting and so is he as he just can't stop Matt and i sometimes just look at each other and say it's his motor. That seems to make it better that we have a reason for this. Denver speech is still going backwards we spent three days at my uncles farm over christmas and when we got there he could say uncle robert and by the time we left three days later he couldn't say it any more. It is heart breaking and we just have to try and figure out what he is saying. It is great to sit and watch deni run around with his cousins and have a ball, but I know find myself looking at every kids head to see what shape it is and if it looks round or not, I can't help it. In my job I see alot of babies and I find myself checking out there heads. I am so thankfull for my job as it is the only real time i can tune out from cranio and it is such a welcome break.
We go away to the beach soon and I can't get excited deni has app. during the time that we are there.
The new year has begin, so away we go.
9th January 2011
I find myself at the beach again having a quiet moment. I am glad to be here, it feels right. Tomorrow we head to the children hospital for a full day of tests, don't know if we will find out anything tomorrow but it feels really good to be doing some thing to be active in his treatment rather than just waiting. It will be a long day but thats ok. We see the neurophycologist tomorrow to see where denver is at I am intrested to what she will say about his development and his speech, lets hope deni is up for it tomorrow and then he has a brain pressure test which they some how do through the eyes, it will be intresting to see. This test will help them decide when they need to do the surgery depending on how much pressure there is on his brain. I feel strangely calm and ok only a few little butterflies but thats ok. I love that I am at the beach again it a wonderful distraction.
It's new years eve and everyone wants to celebrate the end of one year and the new beginning of what everyone hopes will be a better year. I am scared of what the new year will bring for our family. We had a shocked of a year in 2010 with Matt having his heart attack, me trying to get better after being unwell for a while and Denver being diganosied with cranio. So why won't I look forward to the new year? Because every day brings us closer to the day that we hand denver over to the surgens. I know he needs the surgery but it makes me scared and sad that we might lose him as he is, but there is no option, I know.
Denver headaches have settled down at the moment but his behaviour is hard, it is exhausting and so is he as he just can't stop Matt and i sometimes just look at each other and say it's his motor. That seems to make it better that we have a reason for this. Denver speech is still going backwards we spent three days at my uncles farm over christmas and when we got there he could say uncle robert and by the time we left three days later he couldn't say it any more. It is heart breaking and we just have to try and figure out what he is saying. It is great to sit and watch deni run around with his cousins and have a ball, but I know find myself looking at every kids head to see what shape it is and if it looks round or not, I can't help it. In my job I see alot of babies and I find myself checking out there heads. I am so thankfull for my job as it is the only real time i can tune out from cranio and it is such a welcome break.
We go away to the beach soon and I can't get excited deni has app. during the time that we are there.
The new year has begin, so away we go.
9th January 2011
I find myself at the beach again having a quiet moment. I am glad to be here, it feels right. Tomorrow we head to the children hospital for a full day of tests, don't know if we will find out anything tomorrow but it feels really good to be doing some thing to be active in his treatment rather than just waiting. It will be a long day but thats ok. We see the neurophycologist tomorrow to see where denver is at I am intrested to what she will say about his development and his speech, lets hope deni is up for it tomorrow and then he has a brain pressure test which they some how do through the eyes, it will be intresting to see. This test will help them decide when they need to do the surgery depending on how much pressure there is on his brain. I feel strangely calm and ok only a few little butterflies but thats ok. I love that I am at the beach again it a wonderful distraction.
now what?. I fall apart.
19th November 2010
I decide to go away for the weekend with two of my sisters and my brother in laws. I need space, I need quiet, I need sleep. It is a 4 hour drive to where we are going and I can't talk about it I know that they want to know but I can't talk. I send a message app. done not ready to talk ring dad. I am numb, I am lost, I don't know what to feel or do. I am glad to be away from deni as if I looked at him it would all be too much. Glad to be away from my husband who doesn't like to talk about it, I am happy to have my own head space. I sleep so well I found that really strange why would i finally sleep well. The next day I still feel so exhausted my eyes feel swollen, my head huge. I just potter around. I tell my two sisters over morning tea I have some how managed to talk about it without emotion and sound quite disconnected and cold. I can't tell them every thing that was said. I am happy to have it out, but don't really feel any better. I keep having visions of his head without the skull his brain exposed lying on the table. I am afarid. What if he dies? What if he is damaged? What if we don't get our deni back? I want to be on a desserted island away from the medical world that is over taking our lives. I what will we do? Will we survive this? Where will I find the strength to get myself, Denver and everyone through this? What if I can't do it?
I spend alot of time just walking up and down the beach looking at the sea and the sand. Looking for answers. They don't come. I don't know what to do. How do you explain what you don't understand to any one else let alone a four year old.
I have to go home I have no choice. How will I face denver? What is I fall apart? What if I can't do it?
I have so many dark moments. The thoughts of the surgery are taking over my brain. The house is falling apart around me, the other kids are getting neglected. I can't function. I can't sleep. I keep having visions of denvers head cut open with his brain exposed on the operating table. What if he doesn't make it? What if he is damaged? What if he is different to the denver we know and love?
I find it hard to be with people, I can't handle their whinging about how bad their lives are, I want to shout at them they are going to cut my sons head open now thats some thing to whinge about, but I don't I can't. I can't sleep.
Denver's behaviour is getting worse but what do we do, it's not his fault but he can't get away with murder either.
We get letter after letter for app. with different dr's. They are not till feb, but they wanted them all done by feb. I am losing track.
We talk to the other kids. We explain as best we can what is happening. The older get how serious this is and the concern shows on their faces. We are positive and keep it simple. I explain to deni about his head and that the bones in his head have grown a little funny and thats why he keeps getting headaches and why we keep visiting his hospital. He takes it in gives me a kiss and off he goes. I hear him a couple of days later explaining it to his grandma that his head is a bit wobbly and the bones are a bit funny so thats why he goes to the dr's. I love kids how they interpert things and understand it and explain it to others. He is having more and more headaches, he blinks his eyes excessively when his head is annoying him and thats how we know he isn't feeling quite right. We now carry medication because of the headaches and have so much more down time. He is so cuddly. I know he feels what is going on with me.
8th December 2010
Deni is talking to me in the shower and he can't remember a word. It is one of the first words he learnt. He can't remember what to call it. I have to tell him and my heart breaks. It's a ute denver a ute.
17th December 2010
I spend half the day on the phone talking to Deni's dr's, I need his app. to be earlier his headaches are so frequent and he is losing words every day. Today he couldn't remember the colours. He is slowly dissappearing. I explain myself over and over again to the dr's, He needs earlier app. They aggree and will organise them. I am relieved. Thank goddness.
20th December 2010
Denver's neurophycologist rings she is lovely. She chats with me for about half an hour and we go over what is happening with denver. She lets me know that the head aches, the blinking the behaviour and the non stop energy is all normal for cranio kids that have pressure in their brains. She explains that their brain is like a little motor and because of the pressure on it it can't stop running and thats why he can't sit still. And because the motor never stops it gets sore and tired easily. The pressure on the brain is causing him to forget words and affect his speech. It is completly normal for cranio kids. It normally comed better after the op. She arranges all his app. for Jan. A whole day on Jan 10th and more on the 20th. I feel listened to and like there is someone on my side.
22nd December 2010
It's been a terrible week Denver and I are exhausted, head aches all the time and he can't sit still. This is not denver. I am struggling, but where do I go for help. I don't want to be told don't worry it will all be fine, thats not true we don't know that. I don't want my feeling pushed aside and made to feel as though I should be strong and positive. I am on the outside but inside it is dark. Denver is losing words every day and his speech is starting to get hard to understand he is slurring alot of his words and he is having trouble finding the right word he knows he knows it but can't spit it out.
I am meant to be goineg to a family dinner tonight but I can't, I can't be with people. I can't pretend I am ok. I can't sit there and be ok. I need to be with my family, I need to be home, I need quiet time with them. I need to feel safe and secure. No questions. No answers.
I decide to go away for the weekend with two of my sisters and my brother in laws. I need space, I need quiet, I need sleep. It is a 4 hour drive to where we are going and I can't talk about it I know that they want to know but I can't talk. I send a message app. done not ready to talk ring dad. I am numb, I am lost, I don't know what to feel or do. I am glad to be away from deni as if I looked at him it would all be too much. Glad to be away from my husband who doesn't like to talk about it, I am happy to have my own head space. I sleep so well I found that really strange why would i finally sleep well. The next day I still feel so exhausted my eyes feel swollen, my head huge. I just potter around. I tell my two sisters over morning tea I have some how managed to talk about it without emotion and sound quite disconnected and cold. I can't tell them every thing that was said. I am happy to have it out, but don't really feel any better. I keep having visions of his head without the skull his brain exposed lying on the table. I am afarid. What if he dies? What if he is damaged? What if we don't get our deni back? I want to be on a desserted island away from the medical world that is over taking our lives. I what will we do? Will we survive this? Where will I find the strength to get myself, Denver and everyone through this? What if I can't do it?
I spend alot of time just walking up and down the beach looking at the sea and the sand. Looking for answers. They don't come. I don't know what to do. How do you explain what you don't understand to any one else let alone a four year old.
I have to go home I have no choice. How will I face denver? What is I fall apart? What if I can't do it?
I have so many dark moments. The thoughts of the surgery are taking over my brain. The house is falling apart around me, the other kids are getting neglected. I can't function. I can't sleep. I keep having visions of denvers head cut open with his brain exposed on the operating table. What if he doesn't make it? What if he is damaged? What if he is different to the denver we know and love?
I find it hard to be with people, I can't handle their whinging about how bad their lives are, I want to shout at them they are going to cut my sons head open now thats some thing to whinge about, but I don't I can't. I can't sleep.
Denver's behaviour is getting worse but what do we do, it's not his fault but he can't get away with murder either.
We get letter after letter for app. with different dr's. They are not till feb, but they wanted them all done by feb. I am losing track.
We talk to the other kids. We explain as best we can what is happening. The older get how serious this is and the concern shows on their faces. We are positive and keep it simple. I explain to deni about his head and that the bones in his head have grown a little funny and thats why he keeps getting headaches and why we keep visiting his hospital. He takes it in gives me a kiss and off he goes. I hear him a couple of days later explaining it to his grandma that his head is a bit wobbly and the bones are a bit funny so thats why he goes to the dr's. I love kids how they interpert things and understand it and explain it to others. He is having more and more headaches, he blinks his eyes excessively when his head is annoying him and thats how we know he isn't feeling quite right. We now carry medication because of the headaches and have so much more down time. He is so cuddly. I know he feels what is going on with me.
8th December 2010
Deni is talking to me in the shower and he can't remember a word. It is one of the first words he learnt. He can't remember what to call it. I have to tell him and my heart breaks. It's a ute denver a ute.
17th December 2010
I spend half the day on the phone talking to Deni's dr's, I need his app. to be earlier his headaches are so frequent and he is losing words every day. Today he couldn't remember the colours. He is slowly dissappearing. I explain myself over and over again to the dr's, He needs earlier app. They aggree and will organise them. I am relieved. Thank goddness.
20th December 2010
Denver's neurophycologist rings she is lovely. She chats with me for about half an hour and we go over what is happening with denver. She lets me know that the head aches, the blinking the behaviour and the non stop energy is all normal for cranio kids that have pressure in their brains. She explains that their brain is like a little motor and because of the pressure on it it can't stop running and thats why he can't sit still. And because the motor never stops it gets sore and tired easily. The pressure on the brain is causing him to forget words and affect his speech. It is completly normal for cranio kids. It normally comed better after the op. She arranges all his app. for Jan. A whole day on Jan 10th and more on the 20th. I feel listened to and like there is someone on my side.
22nd December 2010
It's been a terrible week Denver and I are exhausted, head aches all the time and he can't sit still. This is not denver. I am struggling, but where do I go for help. I don't want to be told don't worry it will all be fine, thats not true we don't know that. I don't want my feeling pushed aside and made to feel as though I should be strong and positive. I am on the outside but inside it is dark. Denver is losing words every day and his speech is starting to get hard to understand he is slurring alot of his words and he is having trouble finding the right word he knows he knows it but can't spit it out.
I am meant to be goineg to a family dinner tonight but I can't, I can't be with people. I can't pretend I am ok. I can't sit there and be ok. I need to be with my family, I need to be home, I need quiet time with them. I need to feel safe and secure. No questions. No answers.
Friday, January 7, 2011
We get the answer............................
I am so relieved that the ct is done and dusted but now I have stupid thoughts like what if he moved, what if it's not a good picture what if we have to do ita ll again. So now this is keeping me awake.
We get another letter from the childrens with his app, it's soon and an over booking again. Will just have to wait and life must go on.
18th November 2010
The app. is tomorrow and I am shittin myself I am alwful to be around, I am snappy, crappy, tired, irritatable and can't make any decisions to save my self. My dad has offered to go with us for the app tomorrow. I just can;t make up my mind I am trying not to think about it and if I say yes to him coming does that mean it might be bad news, what if they talk to him and not me if I make up my mind that means I have to think about it and I don't want to, I just want it to be over. Deni is sleeping with me more again now I think we both need the comfort and support of wach other, it's nice but matt doesn't like it, but I decide it what deni and i need so thats what we will do.
19th November 2010
What a day. I decided to take my dad at the last minute last night so it was a bit of a pain for him to change his plans but once I ask him to come I am relieved and happy that I made that decision.
In the waiting room I am checking out all the kids do they have cranio what do their heads look like. What do their parents look like are they tired or stressed do they look worried. All the other kids are wee babies and snuggled up with their mums so can't really get a good look and the other mums all look fine. What with me then I feel like shit and look like shit why do they all look fine, why am I the only one falling apart. It's a long weight and I want it done.
Ever walk into a room and just want to back out slowly but swiftly. Thats what it was like this morning. The dr calls us in so we all walk over and the rooms are tine but we get aroud the corner and in the door and there are 6 dr's in there yep six bloody dr's surely there no here for us they must just be chatting. But no they shut the door before I can leave and we sit. They are all staring at us, I want to go home. Introductions are done this is blah blah head neurosurgon, this is blah blah head bone dr, this is blah blah head neurophysochologist ( is she for me or denver I could use a shrink) and it goes on around the room. I have never been good at names.
The head guy ( I know him I think I have seen him on telly on a doco) says yes the x-ray shows that denver has craniosynostosis. Is it ok if we all have a feel of his head. Why ask me it's not my head. So i ask denver and he says yep and goes and stands in the middle of them all. One of them is watching deni closely and taking notes. They all have a feel and then deni retreats to me. They explain a bit about cranio and it just flys over my head. They pu the x-ray up, yep it's a skull x-ray they show where it looks to be joined, yep got it. But then his one of voice changes. Unfortuantly the x-ray shows copper beading of the back part of denver's brain and he points to it, thats the pretty part I think. He goes copper beading means that there is pressure on the brain as that only results after the brain is under strain for a while. He has quite a bit at the back right where i first noticed the funny lump it looks to take up nearly half of his brain. Does denver get headaches, yes a few more lately and he blinks his eyes alot yep all to do with the copper beading. He says the next step is to do a ct. No no no we have done one oh my god it didn't work he should have had the fucking general now we won't get the answers. Thank god they find the ct, it pops on screen and i look from the dr to my dad. They have both slumped in their chairs and the look on their faces says enough. I don't need to be told it's worse then they thought. All the dr's are looking and the image moves around on the screen I show deni look there is your special video denver is getting annoyed so many people in one room and he starts to play up the lady takes more notes. The dr slowly turns around. I don't want him to talk I don't need him to talk, i saw his face and that was enough. But he talks and says the ct scan shows that ALL of deni sutures are fused, they have all gone together which explains the amount of copper beading. It is unusal to have them all joined, but they are. Deni starts hitting me softly thats very unusal for denver he can feel the tension in the air. The lady takes more notes. They start talking about how he operation will be much bigger and much more complicated. Because of denvers age his bones won't re-grow and re-shape. We normally do it before they are one so their bones can recover and re-grow. My dad says how will you do the operation. He slowly says we will cut the head from ear to ear over the top fold away the sking and then cut the bones along his eyebrows down to on top of his ears and around to the back of the head. We then lift the skull off and try to re- shape it. Then he says we are virtually panel beaters to his skull to try and re-shape it. Then we put it back on as best we can and stitch up the head. He will have alot os swelling his eyes will swell shut he will have alot of pain. We are told he will need to wear a helmet. He will be in intensive care and then on a ward. I ask how long does this take? 6-8-10 hours. What about his brain? Yep his brain will be exposed but it will be taken care of and he will be watched very closely. The biggest risks are to his vision and behaviour. We have had 2 deaths over the past 7 yrs at about 3,500 operations.Denver is smuthering me in kisses and big hugs I can't deal with it I don't like it I want him off me, I give him to matt who is just looking at the floor and not saying any thing. Dad is asking more questions, I am glad he is here. I ask what about sport? Denver may have some holes on his skull from the surgery so he might not be able to do any contact sport untill we can fix them up in a few years. My first thought is this guy has never seen my kids wrestling on the floor at home is he kidding, no contact? How the hell do you have no rough contact in a house with five kids and you let the kids play outside and be kids. Denver is agitataed and crawls under the table and chairs he is not himself the lady takes more notes and I want to shout at her STOP this is not him we are locked ina tiny room with all you guys Stop taking your notes this is not him. But I can't. What about the future? They tell me that they are suprised denver doesn't have more behavioural problems. They don't really answer my question but he does say it's ok some do go on to become lawyers and doctors. I don't want a lawyer or a doctor I want my son. I want my son just the way he is. I feel they are not telling me the full story. Bu I probably couldn't take it in any way. They are still talking I have no idea what they are saying. All I can do is the look at the main dr's head he is shinning bald and has the most beautiful round perfect head, why is it so shiny it is so perfect and round, I picture myself getting a hammer to smash that shinning head just once so it's not so perfect and round I don't think you should be allowed to talk to me and other parents with such a round, perfect shiny head. I think I am losing my mind. That lady is still taking notes. All the doctors expressions have changes they now look at us with sympathy no one is smiling any more. I ask is this the only option? They try to not say a straight out no. But if we leave it it will only get worse, there will be more pressure on his brain and one day his brain won't be able to take it any more, so it is really your only option. I can't take in any moe. So I hear we will be sent letters with app. to get some tests done to help decide when to do the op. He says I want them all done by feb. so we can decide. Any questions. Hah. Ring if anything changes.
We leave that women is still taking bloody notes.
We get lunch and go sit out in the back garden trying to talk about it but not knowing what to say. How do you sit around a table eating lunch chatting when you have just been told they are going to cut your sons head open and take his skull off bash it into place and then put it back and hope that he is ok. My Dad rings mum to let her know what is going on I say I don't want to talk. I watch him and when he starts to talk about the app. he moves away so we can't hear and then he moves so we can't see him and thats when it hits me, I know it is bad very bad worse than any one had even thought of. I lay down on the hard wood bench and fall into a deep sleep.
We get another letter from the childrens with his app, it's soon and an over booking again. Will just have to wait and life must go on.
18th November 2010
The app. is tomorrow and I am shittin myself I am alwful to be around, I am snappy, crappy, tired, irritatable and can't make any decisions to save my self. My dad has offered to go with us for the app tomorrow. I just can;t make up my mind I am trying not to think about it and if I say yes to him coming does that mean it might be bad news, what if they talk to him and not me if I make up my mind that means I have to think about it and I don't want to, I just want it to be over. Deni is sleeping with me more again now I think we both need the comfort and support of wach other, it's nice but matt doesn't like it, but I decide it what deni and i need so thats what we will do.
19th November 2010
What a day. I decided to take my dad at the last minute last night so it was a bit of a pain for him to change his plans but once I ask him to come I am relieved and happy that I made that decision.
In the waiting room I am checking out all the kids do they have cranio what do their heads look like. What do their parents look like are they tired or stressed do they look worried. All the other kids are wee babies and snuggled up with their mums so can't really get a good look and the other mums all look fine. What with me then I feel like shit and look like shit why do they all look fine, why am I the only one falling apart. It's a long weight and I want it done.
Ever walk into a room and just want to back out slowly but swiftly. Thats what it was like this morning. The dr calls us in so we all walk over and the rooms are tine but we get aroud the corner and in the door and there are 6 dr's in there yep six bloody dr's surely there no here for us they must just be chatting. But no they shut the door before I can leave and we sit. They are all staring at us, I want to go home. Introductions are done this is blah blah head neurosurgon, this is blah blah head bone dr, this is blah blah head neurophysochologist ( is she for me or denver I could use a shrink) and it goes on around the room. I have never been good at names.
The head guy ( I know him I think I have seen him on telly on a doco) says yes the x-ray shows that denver has craniosynostosis. Is it ok if we all have a feel of his head. Why ask me it's not my head. So i ask denver and he says yep and goes and stands in the middle of them all. One of them is watching deni closely and taking notes. They all have a feel and then deni retreats to me. They explain a bit about cranio and it just flys over my head. They pu the x-ray up, yep it's a skull x-ray they show where it looks to be joined, yep got it. But then his one of voice changes. Unfortuantly the x-ray shows copper beading of the back part of denver's brain and he points to it, thats the pretty part I think. He goes copper beading means that there is pressure on the brain as that only results after the brain is under strain for a while. He has quite a bit at the back right where i first noticed the funny lump it looks to take up nearly half of his brain. Does denver get headaches, yes a few more lately and he blinks his eyes alot yep all to do with the copper beading. He says the next step is to do a ct. No no no we have done one oh my god it didn't work he should have had the fucking general now we won't get the answers. Thank god they find the ct, it pops on screen and i look from the dr to my dad. They have both slumped in their chairs and the look on their faces says enough. I don't need to be told it's worse then they thought. All the dr's are looking and the image moves around on the screen I show deni look there is your special video denver is getting annoyed so many people in one room and he starts to play up the lady takes more notes. The dr slowly turns around. I don't want him to talk I don't need him to talk, i saw his face and that was enough. But he talks and says the ct scan shows that ALL of deni sutures are fused, they have all gone together which explains the amount of copper beading. It is unusal to have them all joined, but they are. Deni starts hitting me softly thats very unusal for denver he can feel the tension in the air. The lady takes more notes. They start talking about how he operation will be much bigger and much more complicated. Because of denvers age his bones won't re-grow and re-shape. We normally do it before they are one so their bones can recover and re-grow. My dad says how will you do the operation. He slowly says we will cut the head from ear to ear over the top fold away the sking and then cut the bones along his eyebrows down to on top of his ears and around to the back of the head. We then lift the skull off and try to re- shape it. Then he says we are virtually panel beaters to his skull to try and re-shape it. Then we put it back on as best we can and stitch up the head. He will have alot os swelling his eyes will swell shut he will have alot of pain. We are told he will need to wear a helmet. He will be in intensive care and then on a ward. I ask how long does this take? 6-8-10 hours. What about his brain? Yep his brain will be exposed but it will be taken care of and he will be watched very closely. The biggest risks are to his vision and behaviour. We have had 2 deaths over the past 7 yrs at about 3,500 operations.Denver is smuthering me in kisses and big hugs I can't deal with it I don't like it I want him off me, I give him to matt who is just looking at the floor and not saying any thing. Dad is asking more questions, I am glad he is here. I ask what about sport? Denver may have some holes on his skull from the surgery so he might not be able to do any contact sport untill we can fix them up in a few years. My first thought is this guy has never seen my kids wrestling on the floor at home is he kidding, no contact? How the hell do you have no rough contact in a house with five kids and you let the kids play outside and be kids. Denver is agitataed and crawls under the table and chairs he is not himself the lady takes more notes and I want to shout at her STOP this is not him we are locked ina tiny room with all you guys Stop taking your notes this is not him. But I can't. What about the future? They tell me that they are suprised denver doesn't have more behavioural problems. They don't really answer my question but he does say it's ok some do go on to become lawyers and doctors. I don't want a lawyer or a doctor I want my son. I want my son just the way he is. I feel they are not telling me the full story. Bu I probably couldn't take it in any way. They are still talking I have no idea what they are saying. All I can do is the look at the main dr's head he is shinning bald and has the most beautiful round perfect head, why is it so shiny it is so perfect and round, I picture myself getting a hammer to smash that shinning head just once so it's not so perfect and round I don't think you should be allowed to talk to me and other parents with such a round, perfect shiny head. I think I am losing my mind. That lady is still taking notes. All the doctors expressions have changes they now look at us with sympathy no one is smiling any more. I ask is this the only option? They try to not say a straight out no. But if we leave it it will only get worse, there will be more pressure on his brain and one day his brain won't be able to take it any more, so it is really your only option. I can't take in any moe. So I hear we will be sent letters with app. to get some tests done to help decide when to do the op. He says I want them all done by feb. so we can decide. Any questions. Hah. Ring if anything changes.
We leave that women is still taking bloody notes.
We get lunch and go sit out in the back garden trying to talk about it but not knowing what to say. How do you sit around a table eating lunch chatting when you have just been told they are going to cut your sons head open and take his skull off bash it into place and then put it back and hope that he is ok. My Dad rings mum to let her know what is going on I say I don't want to talk. I watch him and when he starts to talk about the app. he moves away so we can't hear and then he moves so we can't see him and thats when it hits me, I know it is bad very bad worse than any one had even thought of. I lay down on the hard wood bench and fall into a deep sleep.
Thursday, January 6, 2011
and it keeps going..........
15th October 2010
We have an app. with the dr who suggested the x-ray and i am happy cause i really like her. Feel ok. Our app. is for the 27th of this month, thats quick. I notice on the letter that they have us markes as a urgent double booking. SHIT. Now I am worried. But it's not that bad and i really like this dr. Will just have to wait and see.
26th October 2010
Tomorrow is the app. Matt is coming which is nice but weird he has never come to any of deni's other app with his weight, I am happy he is coming but know that that means he is worried. We tell deni that we are going to his hospital to look at his pictures and to see if he is smiling on them. He is excited. I know I won't sleep tonight.
27th October 2010
I still love this dr. She was straight to the poing we think he has craniosynostosis. Which means that one or some of the suture lines in his head have fused together too early. Which means that his bones can't grow correctly and thats why his head is long and thin. We don't know why he has it. It can be gentic but we have no history of it. It is more common in premmie babies but deni was well and truly cooked. So for us it looks like just bad luck. She has a feel of his head, deni really likes her and is having a good chat. She asks me when I first notice and I tell her the short version of the story and she says "well done, welldone for assking the question over and over again. Thankyou for not giving up." Did i say that i love her. She asks about his heath history where he was born and stuff and for the first time ever I am happy to say that he was born at the womens, because they are happy with that answer. I know that if I had had him at home like I planned they would be wondering if it was noticeable at birth and if I had had him in hospital it might of been picked up by the peads. I smile to myself that thank god I don't have to have that discussion right now. She recommends a CT scan so they can see all the lines in his head and the shape. then we are off to the cranio dr with the results. We leave and i feel ok that wasn't to bad, she doesn't seem to worried. So we head home to wait for the time and date of the CT.
11th November 2010
Today if the day of the ct scan and it's been alwful. His app is not till 12 but because he has to have a general for the ct so he doesn't move he is not allowed to eat or drink. Deni loves his breakfast and grazes all morning till mid afternoon. So trying to keep him away from food and drink is hard work and it sucks for us all.
WE get to the hospital and deni has cried and whinges the whole way in the car, but we made it and on time. The waiting room for day ops is alwful no one talks to any one else and the kids are tired, hungrey cranky and bored. Luckily we don't hav that long a wait and we are called. The nurse says don't get excited I am just here to give you information and asses denver. Bugger! He will be one of the last on the list as it goes fromm oldest to youngest. So we sit and chat she starts focusing on denver and seeing how well he listens and they read a book, they she turns to us and says I think he could do the ct with out the general I think he is calm enough and listens well. I think he can do it. I am unsure what if he moves, what if he gets scared of the machine. What if? What if?
She says lets go have a look and see how he goes. So off we trot and we see the big donut machine that takes the special video and pictures of jis head he gets to put a sticker on it and then he gets a ride on the table that moves. They then bet him that he can't stay still as a statue while the bed and the machine works. He does and so they go once move and then you get a prize. Well with a huge smile on his face for the pictures he goes in the machine as still as can be and it is done. It is over. All that worry for that. He jumps down gets his proze waves good bye and says can we have breakfast now mum.
We have an app. with the dr who suggested the x-ray and i am happy cause i really like her. Feel ok. Our app. is for the 27th of this month, thats quick. I notice on the letter that they have us markes as a urgent double booking. SHIT. Now I am worried. But it's not that bad and i really like this dr. Will just have to wait and see.
26th October 2010
Tomorrow is the app. Matt is coming which is nice but weird he has never come to any of deni's other app with his weight, I am happy he is coming but know that that means he is worried. We tell deni that we are going to his hospital to look at his pictures and to see if he is smiling on them. He is excited. I know I won't sleep tonight.
27th October 2010
I still love this dr. She was straight to the poing we think he has craniosynostosis. Which means that one or some of the suture lines in his head have fused together too early. Which means that his bones can't grow correctly and thats why his head is long and thin. We don't know why he has it. It can be gentic but we have no history of it. It is more common in premmie babies but deni was well and truly cooked. So for us it looks like just bad luck. She has a feel of his head, deni really likes her and is having a good chat. She asks me when I first notice and I tell her the short version of the story and she says "well done, welldone for assking the question over and over again. Thankyou for not giving up." Did i say that i love her. She asks about his heath history where he was born and stuff and for the first time ever I am happy to say that he was born at the womens, because they are happy with that answer. I know that if I had had him at home like I planned they would be wondering if it was noticeable at birth and if I had had him in hospital it might of been picked up by the peads. I smile to myself that thank god I don't have to have that discussion right now. She recommends a CT scan so they can see all the lines in his head and the shape. then we are off to the cranio dr with the results. We leave and i feel ok that wasn't to bad, she doesn't seem to worried. So we head home to wait for the time and date of the CT.
11th November 2010
Today if the day of the ct scan and it's been alwful. His app is not till 12 but because he has to have a general for the ct so he doesn't move he is not allowed to eat or drink. Deni loves his breakfast and grazes all morning till mid afternoon. So trying to keep him away from food and drink is hard work and it sucks for us all.
WE get to the hospital and deni has cried and whinges the whole way in the car, but we made it and on time. The waiting room for day ops is alwful no one talks to any one else and the kids are tired, hungrey cranky and bored. Luckily we don't hav that long a wait and we are called. The nurse says don't get excited I am just here to give you information and asses denver. Bugger! He will be one of the last on the list as it goes fromm oldest to youngest. So we sit and chat she starts focusing on denver and seeing how well he listens and they read a book, they she turns to us and says I think he could do the ct with out the general I think he is calm enough and listens well. I think he can do it. I am unsure what if he moves, what if he gets scared of the machine. What if? What if?
She says lets go have a look and see how he goes. So off we trot and we see the big donut machine that takes the special video and pictures of jis head he gets to put a sticker on it and then he gets a ride on the table that moves. They then bet him that he can't stay still as a statue while the bed and the machine works. He does and so they go once move and then you get a prize. Well with a huge smile on his face for the pictures he goes in the machine as still as can be and it is done. It is over. All that worry for that. He jumps down gets his proze waves good bye and says can we have breakfast now mum.
Wednesday, January 5, 2011
The Beginning.
I have thought about writing this blog for awhile as I have found it very hard to find information about craniosynostosis (cranio) and having an older than normal child affected by it. Denver (Deni) is now four but our story with cranio started years ago. This blog is for other parents and for me there's a lot that often goes around in my head and some times you just can't find the right person to talk to or you don't know how to say it and some times you don't want to say it. My thoughts and worries with Denver often keep me awake at night so I am also hoping that by getting them out of my head it will help. I hope to be able to be really honest with what i right, I think it's the only way to be. Sometimes I bet I will be laughing, crying or just stunned. So here goes.
The Beginning!!!
I remember this day like it was yesterday I am giving Deni a bath with his sisters it's fun because he has just started sitting up and he can now sit and splash in the bath he is about 7 months old. I wash the girls hair and then i wet Deni's head he turns and I seee that at the back of his head near the bottom of the skull kind of sticks out, it's weird not smooth like the others. I wash his hair and try to push that feeling in my tummy aside.
A few days later we are swimming with family and friends and i mention it as his hair is wet again they all notice the funny lumpy thing at the back of his head when i mention it but no one seems concerned every ones head is different it's just the shape of his head. Oh ok, but it still doesn't sit right, but it must just be me no one else is worried,
When he has his next dr's appionment with the gp i mention his head they have a feel and measure his head na it's fine just his shape.
When Deni is7 & 9 months old he is admitted to the royal childrens hospital with really bad gastro and needs medical help to keep hydrated. He is small for his age so once we leave we are giving appionments for the outpatients clinic to keep a watch on his weight. I am not worried about his weight he eats really well, gains weight just not as fast as others and all my kids are small. He is diagnosed with faliure to thrive (bullshit) and we now need to attend every 3-6 months. Deni has every test under the sun they want to figure out why his weight gain is so slow, nothing shows up. He is 12 months old. At every appionment I ask the dr's we see ( we only see the same one for about 2 visits in a row) can you just look at his head and i explain my concern they all look and feel no it seems fine just the shape of his head. Ok, but I still ask every time, the feeling in my stomach just won't go away, some thing's just not right. Some one dares to call my an over reactive mum. yep that went down like a ton of bricks. At each visit they check his motor skills and his speech and that all his mile stones are on target, they are. We continue on this way for ages. His head to me is so different to my other kids it's not round and the shape of his face is different. Now i know that all kids look different but I don't know. His lump at the back of his head was more pronunced and his fore head was also more pronunced. His head was really long and skinny. Hats could be a problem. People did notice the shape of his head and sometimes you would get a comment on it. Deni started talking quite early ( I think he had too being the youngest of 5) and people always commented on how well he spoke and that he sounded much older than what he was and that he could put sentences together and tell great stories and use great big words. Deni and I have a great time together I always tell people he is the perfect last child.
We start to notice in June this year that some times Deni's language doesn't sound just right. His behaviour is changing. We put it dwn to him being the baby of the family and he is spoilt. We head off to his four year old health check up through the local dr's we are a few months early but told thats fine. His motor skills are great his weight is still under, he won't be the tallest kid in the block and his langauge is fine. yeh. I feel relieved it must just be us it must be cause he is the baby of the family. For the first time i think yep it's me may-be I am over reacting.
17th September 2010
We have what I hope is my last app. at the royal childrens Denver will be four at the end of this month and we are hoping this is it. We see a different dr again and Deni has gained nearlly 400grams in 5 months which is good for him and he now weight 13.56 kg. The Dr i see id lovely and we chat and it turns out she knows my gp. I ask her about deni's head she has a look and a feel and says its with in the normal range for size and it is long and thin I think it's ok but there is another dr here who has worked in the skull department so i will get her to double check before you leave. The other dr comes in I love her she is great. We have a chat abput what I have noticed with deni's head and she has a feel. She just casually says to me lets just get a skull x-ray to make sure every thing is fine then you can relax about it. Great. We head up stairs for an skull x-ray and denver loves it. (his grandpa takes x-rays so he thinks that this is fantastic) he smells for the camera and chats away to evrey one, he had a ball. We leave and I breathe a sigh of relief it's over we don't have to go back.
8th October 2010
I recieve a letter in the mail, deni had been offically discharged from the out patients at the kids hospital. I can't believe how happy I am. I jump up and down with joy and relief finally we don't have to worry about it any more every thing is fine. I tell every one.
11th October 2010
I am recovering from gastro and am home alone when the phone rings. It is the dr we saw at the childrens, Some thing showed up on deni's skull x-ray thats not quite right. I hear the wold craniosynostosis. We think the front suture is fused. I don't hear any thing else she talks to me and I don't hear any thing I get off the phone. What???? What just happened??????????? What did she say????????? How do you spell that????????? I make my way to the computer and google skulls and kids and up pop hese web sites for cranio I start looking holy fuck!!!!!!! Thats not what she says. Na can't be evrey thing is fine it's just the shape of his head. I don't want this answer. But all the kids on this web site are babies they all got picked up when they were babies. Denis four. No. what?????????
What do I do??? I need to ring Katy (my little sister) she will fix it she will tell me it's ok, she will make it better. Were the fuck is her number why the hell is she in kenya, what is the special number i have to ring. Katy. Katy answers and i burst into tears I am sobbbing I can't stop. Katy can barely understand me. Her phones drops out. She rings back I can hear the tears in her voice. If she's crying what does that mean, Katy says she will ask around she is a nurse and she will see what she can find out. She manages to calm me down. Shit the kids and hubby come home I must be ok. I go to my room they leave me alone for fear of being vomited on. I talk to matt, he is quite and calm. He says we will just wait and see it can't be that bad other wise they would have picked it up earlier. It's fine don't worry.
I worry and I don't sleep I search the internet for more answers but I don't like what i see. I think I know which type he has. I think by reading and looking at the pictures it's his sag. suture that is fused. Thats good only one. I spend the day crying on and off i am in shock, i don't know what to do.
12th October 2010
I an angry so angry. How could they not have known. What the fuck. I am angry. No one listened. No one heard me. No one listened. Why?? Why?? Why him??? I am like a bear with a sore head luckly on am on my own for most of the day. I find myself pacing the house. I am so angry.
I get a letter from the hospital, Denevr has an app.
13th October 2010
Why??? Why???? Why???
Why didn't they listen?
Why didn't they hear me?
Why didn't I do some thing??
Why didn't I ask some one else?
Why didn't I push harder?
Why did I ignore my gut?
I am his mother I should be able to protect him.
I have failed.
How can this happen to him he is my baby?
It's my fault. What could I have done to change this?
I have failed him.
14th October 2010
I start to tell family and my closest friends. It's so hard for me to talk about. I don't want to talk about it but they need to know. Every one is asking questions but I don't know the answers. I want this all to stop. I have had enough. I want to sleep. I want to look at Denver and not see the funny shape of his head. I want to see him as I saw him before, my perfect last child not the child I failed and couldn't protect. I am sorry Denver I am so sorry.
The Beginning!!!
I remember this day like it was yesterday I am giving Deni a bath with his sisters it's fun because he has just started sitting up and he can now sit and splash in the bath he is about 7 months old. I wash the girls hair and then i wet Deni's head he turns and I seee that at the back of his head near the bottom of the skull kind of sticks out, it's weird not smooth like the others. I wash his hair and try to push that feeling in my tummy aside.
A few days later we are swimming with family and friends and i mention it as his hair is wet again they all notice the funny lumpy thing at the back of his head when i mention it but no one seems concerned every ones head is different it's just the shape of his head. Oh ok, but it still doesn't sit right, but it must just be me no one else is worried,
When he has his next dr's appionment with the gp i mention his head they have a feel and measure his head na it's fine just his shape.
When Deni is7 & 9 months old he is admitted to the royal childrens hospital with really bad gastro and needs medical help to keep hydrated. He is small for his age so once we leave we are giving appionments for the outpatients clinic to keep a watch on his weight. I am not worried about his weight he eats really well, gains weight just not as fast as others and all my kids are small. He is diagnosed with faliure to thrive (bullshit) and we now need to attend every 3-6 months. Deni has every test under the sun they want to figure out why his weight gain is so slow, nothing shows up. He is 12 months old. At every appionment I ask the dr's we see ( we only see the same one for about 2 visits in a row) can you just look at his head and i explain my concern they all look and feel no it seems fine just the shape of his head. Ok, but I still ask every time, the feeling in my stomach just won't go away, some thing's just not right. Some one dares to call my an over reactive mum. yep that went down like a ton of bricks. At each visit they check his motor skills and his speech and that all his mile stones are on target, they are. We continue on this way for ages. His head to me is so different to my other kids it's not round and the shape of his face is different. Now i know that all kids look different but I don't know. His lump at the back of his head was more pronunced and his fore head was also more pronunced. His head was really long and skinny. Hats could be a problem. People did notice the shape of his head and sometimes you would get a comment on it. Deni started talking quite early ( I think he had too being the youngest of 5) and people always commented on how well he spoke and that he sounded much older than what he was and that he could put sentences together and tell great stories and use great big words. Deni and I have a great time together I always tell people he is the perfect last child.
We start to notice in June this year that some times Deni's language doesn't sound just right. His behaviour is changing. We put it dwn to him being the baby of the family and he is spoilt. We head off to his four year old health check up through the local dr's we are a few months early but told thats fine. His motor skills are great his weight is still under, he won't be the tallest kid in the block and his langauge is fine. yeh. I feel relieved it must just be us it must be cause he is the baby of the family. For the first time i think yep it's me may-be I am over reacting.
17th September 2010
We have what I hope is my last app. at the royal childrens Denver will be four at the end of this month and we are hoping this is it. We see a different dr again and Deni has gained nearlly 400grams in 5 months which is good for him and he now weight 13.56 kg. The Dr i see id lovely and we chat and it turns out she knows my gp. I ask her about deni's head she has a look and a feel and says its with in the normal range for size and it is long and thin I think it's ok but there is another dr here who has worked in the skull department so i will get her to double check before you leave. The other dr comes in I love her she is great. We have a chat abput what I have noticed with deni's head and she has a feel. She just casually says to me lets just get a skull x-ray to make sure every thing is fine then you can relax about it. Great. We head up stairs for an skull x-ray and denver loves it. (his grandpa takes x-rays so he thinks that this is fantastic) he smells for the camera and chats away to evrey one, he had a ball. We leave and I breathe a sigh of relief it's over we don't have to go back.
8th October 2010
I recieve a letter in the mail, deni had been offically discharged from the out patients at the kids hospital. I can't believe how happy I am. I jump up and down with joy and relief finally we don't have to worry about it any more every thing is fine. I tell every one.
11th October 2010
I am recovering from gastro and am home alone when the phone rings. It is the dr we saw at the childrens, Some thing showed up on deni's skull x-ray thats not quite right. I hear the wold craniosynostosis. We think the front suture is fused. I don't hear any thing else she talks to me and I don't hear any thing I get off the phone. What???? What just happened??????????? What did she say????????? How do you spell that????????? I make my way to the computer and google skulls and kids and up pop hese web sites for cranio I start looking holy fuck!!!!!!! Thats not what she says. Na can't be evrey thing is fine it's just the shape of his head. I don't want this answer. But all the kids on this web site are babies they all got picked up when they were babies. Denis four. No. what?????????
What do I do??? I need to ring Katy (my little sister) she will fix it she will tell me it's ok, she will make it better. Were the fuck is her number why the hell is she in kenya, what is the special number i have to ring. Katy. Katy answers and i burst into tears I am sobbbing I can't stop. Katy can barely understand me. Her phones drops out. She rings back I can hear the tears in her voice. If she's crying what does that mean, Katy says she will ask around she is a nurse and she will see what she can find out. She manages to calm me down. Shit the kids and hubby come home I must be ok. I go to my room they leave me alone for fear of being vomited on. I talk to matt, he is quite and calm. He says we will just wait and see it can't be that bad other wise they would have picked it up earlier. It's fine don't worry.
I worry and I don't sleep I search the internet for more answers but I don't like what i see. I think I know which type he has. I think by reading and looking at the pictures it's his sag. suture that is fused. Thats good only one. I spend the day crying on and off i am in shock, i don't know what to do.
12th October 2010
I an angry so angry. How could they not have known. What the fuck. I am angry. No one listened. No one heard me. No one listened. Why?? Why?? Why him??? I am like a bear with a sore head luckly on am on my own for most of the day. I find myself pacing the house. I am so angry.
I get a letter from the hospital, Denevr has an app.
13th October 2010
Why??? Why???? Why???
Why didn't they listen?
Why didn't they hear me?
Why didn't I do some thing??
Why didn't I ask some one else?
Why didn't I push harder?
Why did I ignore my gut?
I am his mother I should be able to protect him.
I have failed.
How can this happen to him he is my baby?
It's my fault. What could I have done to change this?
I have failed him.
14th October 2010
I start to tell family and my closest friends. It's so hard for me to talk about. I don't want to talk about it but they need to know. Every one is asking questions but I don't know the answers. I want this all to stop. I have had enough. I want to sleep. I want to look at Denver and not see the funny shape of his head. I want to see him as I saw him before, my perfect last child not the child I failed and couldn't protect. I am sorry Denver I am so sorry.
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