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.
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