I am reliving it. From start to finish. The worry, the talking and no one hearing me, the failure I feel about this, knowing I can't protect my son. Tomorrow we go to the surgeon. He has had 8 infections in his scar. 5 in one spot, 2 in another and then one other spot. The one he has now looks nasty and is getting sore. Iknow the trauma of going back there will resurface for him and for me. I sit here in bed at midnight and I can feel the tension in the house, the air, each other and in me. I am scared and feel so very alone. I want to curl up in a ball and sleep. It's just Deni and me tomorrow. I will be strong tomorrow, I will have the best five year old holding my hand as we go up elevators, down corridors and into rooms.
Pray for Deni and pray for me cause I don't want to feel alone.
Thursday, September 29, 2011
Tuesday, September 27, 2011
6 months post op and turning 5
So the end of this week it will be 6 months post op from surgery. Do I feel relieved? No. Do I feel happy?No. Do I feel like it is behind us?No. Do I feel sad?Yes. Do I feel exhausted by it?Yes. Do I think it will ever end? No. Do I think people understand?No.
You may wonder why all of these feelings are here with me and why I don't feel relief. We are having problems with Denver's scar. It is huge from ear to ear in a zig zag, His hair has grown alot lately so other people don't really notice it. Being nearly six months post op it should be healed and not a concern. Denver has had four infections in his scar on his right side and two on his left side. They are always in the same place. The last visit at the surgeon he had had three infections by then and we all thought that now he would not be wearing his helmet any more that he probably won't get any more. If he did get another one I was to ring the surgeon and they might want to go back in and clean up the scar and see what is the cause of the infections. Well he did get another one and I saw it early, so I decided to just treat it myself and see if I could get on top of it and not feel the need to ring the surgeon. I was trying to do any thing to protect Deni from more traumatizing surgery. It healed quickly and with no problems it wasn't as bad as the other infection so I felt good about avoiding the surgeons knife. Last Thursday I walked in the door said hello to everyone and then I saw it. What the hell was it. It looked like dry blood on his scar. Where was if from? Why was it there?
On closer examine and remaining calm I saw that it looked kinda like a blood blister, or hematoma or ???
I checked with every one that had been with him that day if they had noticed it ans no one had, some times only a mum notices these things.It wasn't there this morning. I asked Denver if he had bumped his head today and he said no, which I fully believe as if he ever bumps his head even slightly it is a very traumatic thing for Denver. His kindergarten also rings me if he bumps his head so I knew it wasn't from that, so what was it?
So off to the GP the next day and they don't know what it is, but it doesn't look like an infection, he is fine. I rang the surgeon knowing we couldn't avoid it this time. So we are now going there this Friday, what a way to celebrate 6 months post op. I am scared of what he will say and what it will mean. There is no relaxing with this cranio shit. I am always checking the scar making sure its OK and that there are no changes and it looks OK. But also not trying to scare Denver, i think he is just used to me now. It is now drying out a bit and looking a bit like an abscess. He has also had a few headaches in the last two weeks, with any other child I won't really pay that much attention to the odd headache, but with Denver it could just be a head ache or it could be more. If only I could protect his brain. There is already damage to the back half and that's more than enough thank you. I want it to stop, give us a break please. The exhaustion with cranio came back with the new strange thing on his scare. On face book that day i think my status says it perfectly.
I am not angry, bitter or frustrated.
I am just done.
Done with cranio.
Done with what it has done to my son, my family an me.
It's a grey cloud that just won't shift.
On a brighter note Denver turned 5 yesterday, the big all important 5. We celebrated with a party on Saturday and a family dinner last night. I was sad leading up to it as Denver is my last baby and he will now be five. I have enjoyed the early years so much with all my kids. But I was also so happy that he made it. My sister and i called i 'stayin alive at five'. He was so happy to be turning five and after such a big unknown year it was a relief to make it and get there. So my baby is now five and I am so proud.
What i wrote for Deni on his birthday.
Early this morning five years ago I gave birth to my fifth baby and second boy, Denver James.
As we looked at each other for the first time, it was a look of there you are, we already know each other.
I miss having him to myself in my belly or snuggled at the breast, But I love to feel him in my arms for huggies and to see that smile on his face.
He has taught me so much in our five years, more than I thought possible.
He has the most deepest and richest love for me and my family.
He has taught us courage and to never give up, that every thing will be alright with a kiss and a cuddle.
I love you my Deni.
Thank you for choosing me to be your mum.
I love you so.
You may wonder why all of these feelings are here with me and why I don't feel relief. We are having problems with Denver's scar. It is huge from ear to ear in a zig zag, His hair has grown alot lately so other people don't really notice it. Being nearly six months post op it should be healed and not a concern. Denver has had four infections in his scar on his right side and two on his left side. They are always in the same place. The last visit at the surgeon he had had three infections by then and we all thought that now he would not be wearing his helmet any more that he probably won't get any more. If he did get another one I was to ring the surgeon and they might want to go back in and clean up the scar and see what is the cause of the infections. Well he did get another one and I saw it early, so I decided to just treat it myself and see if I could get on top of it and not feel the need to ring the surgeon. I was trying to do any thing to protect Deni from more traumatizing surgery. It healed quickly and with no problems it wasn't as bad as the other infection so I felt good about avoiding the surgeons knife. Last Thursday I walked in the door said hello to everyone and then I saw it. What the hell was it. It looked like dry blood on his scar. Where was if from? Why was it there?
On closer examine and remaining calm I saw that it looked kinda like a blood blister, or hematoma or ???
I checked with every one that had been with him that day if they had noticed it ans no one had, some times only a mum notices these things.It wasn't there this morning. I asked Denver if he had bumped his head today and he said no, which I fully believe as if he ever bumps his head even slightly it is a very traumatic thing for Denver. His kindergarten also rings me if he bumps his head so I knew it wasn't from that, so what was it?
So off to the GP the next day and they don't know what it is, but it doesn't look like an infection, he is fine. I rang the surgeon knowing we couldn't avoid it this time. So we are now going there this Friday, what a way to celebrate 6 months post op. I am scared of what he will say and what it will mean. There is no relaxing with this cranio shit. I am always checking the scar making sure its OK and that there are no changes and it looks OK. But also not trying to scare Denver, i think he is just used to me now. It is now drying out a bit and looking a bit like an abscess. He has also had a few headaches in the last two weeks, with any other child I won't really pay that much attention to the odd headache, but with Denver it could just be a head ache or it could be more. If only I could protect his brain. There is already damage to the back half and that's more than enough thank you. I want it to stop, give us a break please. The exhaustion with cranio came back with the new strange thing on his scare. On face book that day i think my status says it perfectly.
I am not angry, bitter or frustrated.
I am just done.
Done with cranio.
Done with what it has done to my son, my family an me.
It's a grey cloud that just won't shift.
On a brighter note Denver turned 5 yesterday, the big all important 5. We celebrated with a party on Saturday and a family dinner last night. I was sad leading up to it as Denver is my last baby and he will now be five. I have enjoyed the early years so much with all my kids. But I was also so happy that he made it. My sister and i called i 'stayin alive at five'. He was so happy to be turning five and after such a big unknown year it was a relief to make it and get there. So my baby is now five and I am so proud.
What i wrote for Deni on his birthday.
Early this morning five years ago I gave birth to my fifth baby and second boy, Denver James.
As we looked at each other for the first time, it was a look of there you are, we already know each other.
I miss having him to myself in my belly or snuggled at the breast, But I love to feel him in my arms for huggies and to see that smile on his face.
He has taught me so much in our five years, more than I thought possible.
He has the most deepest and richest love for me and my family.
He has taught us courage and to never give up, that every thing will be alright with a kiss and a cuddle.
I love you my Deni.
Thank you for choosing me to be your mum.
I love you so.
Saturday, August 6, 2011
Life goes on....
Life is still going and as always it has it ups and downs. Denver is loving kindergarten and being back with his friends and feeling normal now that he doesn't have to wear his helmet. He has the sparkle back in his eyes and is confident. He is going so well, but sometimes it is as though we have gone back in time and we are back just after the operation. If he bumps his head even just a tiny bit, the fear and trauma that that can bring Denver is huge and normally takes quite alot of hugs and soothing to reassure him that he is OK. he had his first fall at kinder and knocked his head. His teacher was wonderful and sat him down and made sure he was fine, before calling me and having a little panic attack. He was fine and we all survived. I overheard Denver having a conversation with Terry in the cars about operations. He was explaining how the first one hurt and wasn't nice but that the second one didn't hurt and they took all the hurts away and the bad bits so the second one was much better. So that was so nice to hear and really reassuring that he was going OK and wasn't angry about it at all, or untrusting. His hair is growing, oh so slowly but growing.
The only down side is we are still just waiting and seeing to make sure his brain is OK. He has had a few things that are worrying me. He has had a day sleep every day this week, which normally wouldn't raise alarm bells so others but for Deni it is a thing to watch as it may mean he is not sleeping well at night again which could be due to brain pressure. yesterday we were painting and having fun and he could not remember the colours. Denver knows his colours but he didn't yesterday. His favorite colours are orange and blue and he couldn't remember their names. Oh my heart broke, but in true mummy style we just move on and keep painting. But i am now on high alert (as if i never was). The other thing i am worrying about is school next year. With all this going on is he going to be ready, is his brain going to be able to cope, will he be OK? It is a struggle between wanting him to be 'normal' and go with the flow and do what we had planned for him or stopping and going no, our kid has special things we need to take into consideration. Denver is so excited about going to school next year, if we decided to keep him in kinder for another year it would be a blow for him. So...
But Denver is here and doing well and so is the rest of the family.
We only have to go to the hospital every three weeks now so that is such a welcome relief. For the most part our days are 'normal' just like any other family. I am getting used to the new Denver but sometimes my heart cracks when I see his scars and wish it could be different for him. But it's not and we are learning to live with cranio being part of our lives.
Tuesday, July 19, 2011
I wish I could be more positive today, but I can't. I have been going to write about our last appointment for a couple of days but waiting to get more positive about it but it hasn't happened yet. Don't get me wrong the appointment was not dome and gloom not even close, but I am struggling with it. We went to Denver's neurosurgeon on Thursday. I haven't told many people about the appointment or have just said it went fine when asked as I have already been told don't worry about it, it's fine, forget about it. So been keeping to myself on this one.
I really like his neurosurgeon so that's a good start. She was amazed at how well he looks and how he appears to be going. She said that his brain was very very tight when they took the skull off and that it had no room left so it was lucky it was done then as his brain really had no time to spare. She said that she expected that his brain would have expanded nicely into the new shape by now. She is confident that his brain pressure has gone down as he doesn't have nearly as many headaches and his memory and speech have improved. So that all sounds rosy. I then ask what about the future, will the coopering at the back of his brain improve or disappear, will his brain by OK from all of this, will he have 'normal' brain function, will he be OK. She replies we don't know. We know that his brain was suffering but we don't know if his brain will mend itself or if it will do OK. We hope that it does but we just have to wait and see. So I say wait and see for what? We have to wait and see if he reaches his milestones, if his brain continues to develop correctly, if he learns and remembers things as he gets older, we have to wait and see if the brain will heal itself or not. We just don't know what will happen we just have to wait and see.
I hate the words wait and see, they don't tell you anything. I have decided I am not a patient person when it comes to the medical side of things I want answers and I want them now. I HATE wait and see. I left feeling like I can never relax, I have to keep watching so closely, never drop my guard always be on the look out. I said to my hubby I feel like nothing will ever just be normal, when he brings his school report home I will be scanning it to see if he is keeping up, if he is improving, is he 'normal'. I read my other kids school reports and just want to know that they are learning and happy, I am not bothered about if they are doing every thing at the right time and level, I just want them to enjoy learning and be happy. I nearly feel that that has been stolen from me with Denver because we will always be waiting and seeing. I think I am really feeling this one because the last one made me feel so positive. It is also because I have lost one of my support groups which was my class every Friday with my doula women, losing a place where you can be free to feel any thing and be comforted by others, with no judgement and no questions and no you should be over it by now statements has left me longing for that safety. It's also school holidays so I have been out of routine and missing my coffee friends who always make me laugh and forget about the world. It would be better if I thought that this would ever end, knowing that it won't is exhausting. having people say " I bet your glad that that's over" is hard to take politely, that operation is over, but the trauma is still here. Denver has become extra clingy since that appointment, Tells me don't ever leave me mummy, your my mummy or I am never gonna leave you mummy cause your my mummy. he is stuck to me like glue and I am finding him in our bed once more at night. So no I don't think it is over, but we will just have to wait and see.
Quote of the week from Denver.
"Mummy I think I've lost you know that thingy in my brain that remembers things, I think it has moved somewhere else in my head."
If only he knew how true that was.
I really like his neurosurgeon so that's a good start. She was amazed at how well he looks and how he appears to be going. She said that his brain was very very tight when they took the skull off and that it had no room left so it was lucky it was done then as his brain really had no time to spare. She said that she expected that his brain would have expanded nicely into the new shape by now. She is confident that his brain pressure has gone down as he doesn't have nearly as many headaches and his memory and speech have improved. So that all sounds rosy. I then ask what about the future, will the coopering at the back of his brain improve or disappear, will his brain by OK from all of this, will he have 'normal' brain function, will he be OK. She replies we don't know. We know that his brain was suffering but we don't know if his brain will mend itself or if it will do OK. We hope that it does but we just have to wait and see. So I say wait and see for what? We have to wait and see if he reaches his milestones, if his brain continues to develop correctly, if he learns and remembers things as he gets older, we have to wait and see if the brain will heal itself or not. We just don't know what will happen we just have to wait and see.
I hate the words wait and see, they don't tell you anything. I have decided I am not a patient person when it comes to the medical side of things I want answers and I want them now. I HATE wait and see. I left feeling like I can never relax, I have to keep watching so closely, never drop my guard always be on the look out. I said to my hubby I feel like nothing will ever just be normal, when he brings his school report home I will be scanning it to see if he is keeping up, if he is improving, is he 'normal'. I read my other kids school reports and just want to know that they are learning and happy, I am not bothered about if they are doing every thing at the right time and level, I just want them to enjoy learning and be happy. I nearly feel that that has been stolen from me with Denver because we will always be waiting and seeing. I think I am really feeling this one because the last one made me feel so positive. It is also because I have lost one of my support groups which was my class every Friday with my doula women, losing a place where you can be free to feel any thing and be comforted by others, with no judgement and no questions and no you should be over it by now statements has left me longing for that safety. It's also school holidays so I have been out of routine and missing my coffee friends who always make me laugh and forget about the world. It would be better if I thought that this would ever end, knowing that it won't is exhausting. having people say " I bet your glad that that's over" is hard to take politely, that operation is over, but the trauma is still here. Denver has become extra clingy since that appointment, Tells me don't ever leave me mummy, your my mummy or I am never gonna leave you mummy cause your my mummy. he is stuck to me like glue and I am finding him in our bed once more at night. So no I don't think it is over, but we will just have to wait and see.
"Mummy I think I've lost you know that thingy in my brain that remembers things, I think it has moved somewhere else in my head."
If only he knew how true that was.
Tuesday, June 28, 2011
It is hard to believe that we might be on the other side. It has taken such a long time to get here, but maybe we are here.
We had our 12week post op appointment last Friday and they are very happy with how Denver's head has been healing and the shape that it now has. Of course there are things we are still watching but overall the news was good. Denver has had three infections in his suture wound and if he develops another they want to operate to remove and undissolved stitches that may be left and causing the infection. The ridge on the back of his head is still prominent and a little cause for concern. The main worry that if something were to hit that ridge the skin would split open because of the shape of the ridge. They are hoping that it will mould and settle down but if not the will do an operation to smooth it down. They also spoke about that they might want to go back and make his scar smaller as it is quite large on the sides and no hair is growing there at the moment, but its a wait and see. None of those things even compare to were we have been and feel so minor at the moment, they are not life threatening and can wait for another day.
So that's all the concerns but there if GREAT news. Denver is now helmet free, yep helmet free. He has gained so much confidence and you can see that there is more light and joy in his eyes, its amazing. He now thinks he can do anything with often leads to me cringing, but he is so happy. He is so happy that there is nothing different or standing out on him, no one asks him about his helmet, I suppose he feels normal again.
They are so excited that Denver is getting memory back. Not as excited as us though. That he can now remember things that happened before the operation and after is so exciting. To know that all those memories can be slowly accessed again is mind blowing and brings a tear to my eyes. He was able to read a book back to me the other day from memory which I took for granted with my other kids, but didn't realise how important it is until Denver could no longer do it.
They think that Denver should be able to play contact sport when he is older. Once again to know that he will be able to join in at school sports and games and not be singled out is a huge relief.
So it felt like a happy fest of good information on Friday. It feels so much lighter, it's so nice to hear good news instead of doom and gloom.
We now only have one appointment a month for a few months so that's going to be good not to be always going back and fourth. We are not out of all the woods yet, but its good progress and we are so happy today and Deni is beaming and that's what we did this all for and that all that matters.
We are off on a holiday, me and the kids to have some fun, relax and be normal, no doctors, no helmets but lots and lots of fun.
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We had our 12week post op appointment last Friday and they are very happy with how Denver's head has been healing and the shape that it now has. Of course there are things we are still watching but overall the news was good. Denver has had three infections in his suture wound and if he develops another they want to operate to remove and undissolved stitches that may be left and causing the infection. The ridge on the back of his head is still prominent and a little cause for concern. The main worry that if something were to hit that ridge the skin would split open because of the shape of the ridge. They are hoping that it will mould and settle down but if not the will do an operation to smooth it down. They also spoke about that they might want to go back and make his scar smaller as it is quite large on the sides and no hair is growing there at the moment, but its a wait and see. None of those things even compare to were we have been and feel so minor at the moment, they are not life threatening and can wait for another day.
So that's all the concerns but there if GREAT news. Denver is now helmet free, yep helmet free. He has gained so much confidence and you can see that there is more light and joy in his eyes, its amazing. He now thinks he can do anything with often leads to me cringing, but he is so happy. He is so happy that there is nothing different or standing out on him, no one asks him about his helmet, I suppose he feels normal again.
They are so excited that Denver is getting memory back. Not as excited as us though. That he can now remember things that happened before the operation and after is so exciting. To know that all those memories can be slowly accessed again is mind blowing and brings a tear to my eyes. He was able to read a book back to me the other day from memory which I took for granted with my other kids, but didn't realise how important it is until Denver could no longer do it.
They think that Denver should be able to play contact sport when he is older. Once again to know that he will be able to join in at school sports and games and not be singled out is a huge relief.
So it felt like a happy fest of good information on Friday. It feels so much lighter, it's so nice to hear good news instead of doom and gloom.
We now only have one appointment a month for a few months so that's going to be good not to be always going back and fourth. We are not out of all the woods yet, but its good progress and we are so happy today and Deni is beaming and that's what we did this all for and that all that matters.
We are off on a holiday, me and the kids to have some fun, relax and be normal, no doctors, no helmets but lots and lots of fun.
Thursday, June 23, 2011
can you believe it's been 12 weeks.......
Yep it was 12 weeks on Tuesday, unbelievable. It feels like some of the time has flown and then that other times have gone incredibly slow. We head back to the surgeon tomorrow for our 12 week post op check. I am nervous but not as nervous as i have been before. I feel OK at this moment. But as I think about it more I am starting to get a little nervous. But Denver looks great, he is not sleeping in our bed anymore he has moved in to terry's bed, it's a step in the right direction. So not sure what we will find out tomorrow or what they are looking for. I hope to find out more about the ridge at the back of his head where they think his bone and slipped and see what they what to do with that. I am very excited as in the last three days Denver has started to remember things, which doesn't sound huge but for his it is as it was something he lost. He remembered a story I read to him and could read it back from memory, he remembered a place we went to today that we were last at in August. So little things like that have started to happen and Matt and I are so excited. It's those little things you take for granted, that matter so much. He has just recovered from his third infection of the suture wound so need to get that checked out and hopefully maybe get rid of the helmet. He has been allowed to wear it less and I am starting to like and get used to the new Denver. His hair is starting to grow. He and I, well everyone for that matter gets very nervous when he doesn't have his helmet on so if we do get to toss it it will be interesting to see how that goes for us all. So all I can do now is hope and pray. Tomorrow's appointment involves no physical pain for Denver so that's a bonus and a half, not looking forward to the next round of appointments. Here's some pictures of took of Deni yesterday to show you his head 12 weeks post op.
His cousin Marlee loves the helmet and thinks she is pretty cool.
Wednesday, June 15, 2011
A Picture......
It's amazing the power that a picture can have. Picking Denver up from kinder on Tuesday and I spotted their place mats that they have with a picture of them on it and their name on the other side. On top of the pile was one that looked like Denver. I picked it up and just held it in my hands and starred at it. It looked like Denver but it didn't as well. I just kind of starred at it in disbelief. Was that really Denver. I even turned the place mat over to make sure that it was Denver that it was his and his name was on the back. I looked up at Denver and then back at the picture, it felt unreal. He looks so different now. I then had to put the picture down as I am sure I looked odd (more than normal).
On driving home I got mad how could they not see, how could the Dr's not see what I saw. I hated that I was getting made about this again. But the feeling of not being heard and believed were all coming back up to the surface. But then I just got sad. Sad at the difference that there is in the way he looks. I hate to say it but I still like the old Denver more. That Denver was the love of my life for 4 years and now he looks different and I love the new Denver, but their is a but. If I could have the Denver that looks like that back without the cranio and the suffering I would. It hurts deep inside that he looks so different to me and I am amazed that I still feel so deeply about it still. It is hard as this journey is not over. His head is still changing after the op and there might be more surgery down the road we don't know yet. Cranio has changed Denver not only on the outside but on the inside as well, Denver often has daily struggles with something to do with cranio and all the medical stuff. We are constantly together and trying to quietly reassure each other. I think we are both exhausted.
Denver gives me the most incredible hugs with his tiny little arms and if I close my eyes and melt into the hug I can forget the cranio for that moment and that is when I am truly happy and at peace.
On driving home I got mad how could they not see, how could the Dr's not see what I saw. I hated that I was getting made about this again. But the feeling of not being heard and believed were all coming back up to the surface. But then I just got sad. Sad at the difference that there is in the way he looks. I hate to say it but I still like the old Denver more. That Denver was the love of my life for 4 years and now he looks different and I love the new Denver, but their is a but. If I could have the Denver that looks like that back without the cranio and the suffering I would. It hurts deep inside that he looks so different to me and I am amazed that I still feel so deeply about it still. It is hard as this journey is not over. His head is still changing after the op and there might be more surgery down the road we don't know yet. Cranio has changed Denver not only on the outside but on the inside as well, Denver often has daily struggles with something to do with cranio and all the medical stuff. We are constantly together and trying to quietly reassure each other. I think we are both exhausted.
Denver gives me the most incredible hugs with his tiny little arms and if I close my eyes and melt into the hug I can forget the cranio for that moment and that is when I am truly happy and at peace.
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