It has felt quite a while since I last blogged.
Kian is really well at the moment.
Therapy is going steady at the moment for Kian. I have yet another meeting with Speech next week to try and gain some more time or even just some time for Kian with a ST. It is really frustrating and annoying.
Kian has a hearing test next week also then it is back to seeing where we are with the hearing aids
After new year we are having a stair lift fitted at home. People who know Kian to see will know he is not the average size for a child of his age but he is 3 foot and when carrying him up and down stairs on at least 3 occasions a day, it can get awkward. Also Kian does not help in the way of holding on safely, he will pull himself back in a position where you get used to carrying him safely but really isnt ideal.
The push for the stair lift was finding out I was pregnant with my second child. This child was planned and wanted. I found out pretty much straight away as I was getting ready for the great north run on sep 19th and was waiting for my period to come. Sorry for the personal information. I had also been at a meeting on the thursday where I kept having flushes and feeling weak. On leaving the meeting I went to my local morrisons where I bought a test. I thought I would safe embarressment by going to the self service till. Oh no, not to be, I scanned the test and the light started flashing and I had to wait for an assistant to come over to my till. This was typical of my luck. Anyway, finally bought test and went to supermarket toilet to do it and there were the two lines. Eeeeee! I went in the car and spoke to a friend, I had to have some time to gather myself before I went home where my brother was babysitting Kian. I went home and took the second test in the pack to be sure, there were the two lines again. I had been able to speak to Craig by then who most will know works away. I thought we may have been different this time and kept it to ourselves until we knew what was what, unlike when I was pregnant with Kian, we spread the news straight away. Well we ended up sharing the news to close family and friends. I was aware that there could be mixed opinions. For instance would we cope when we have a disabled child to look after, what if this child was disabled too!
We had discussed future pregnancies with genetics and they had said there was no reason for us to not to go on to have a healthy child and to get intouch if I did become pregnant. I think everyone seemed quite pleased with the news, though I wouldnt have been shocked to hear people question our decision. The argument on our side had always been, why shouldnt Kian have a brother or sister and did we as parents not have the right to experience parenting from the different angle. Believe me looking after a disabled child is actually all I know at the moment, and I get great satisfaction a pride from Kian. I never said 100% after I had Kian that I would have another child, but Kian loves children, all children and I cant imagine my childhood dare I say, without my brother and sister.
My first decision was to pull out of the great north run, I know people will say pregnancy is not an illness but we didnt want to put anything to chance. I phoned the drs to see if I needed to go and see a dr but because of having the two tests I just had to register with the midwife. Being at the same drs from when I was pregnant with Kian, there is one main midwife and I did ask whether I would have to have her. She was not very approachable when I was pregnant with Kian, and I knew this time round I needed someone to be comfortable with.
Myself and Craig went to meet with Kian's genetic dr about the pregnancy. I have always said how nice and approachable he is and stick to that. He was very pleased with our news and spoke about our options. He did explain that there were tests we could have which could test the baby for whs but because me and Craig were not carriers of the gene then there would be a higher risk of miscarriage than the baby having whs. We came away from the appointment planning to have extra scans and just thinking on going ahead with the tests. Something had struck a cord when I got home with what the dr had said that we hadnt known before. He said that though we did not have the abnormal gene, Kian having whs could have happened 3 ways when conceived. If it had been two ways, it would never happen to us again but if had happened the other way (and it had to do with how the sperm meets the egg) then there was a 1 in 200 chance of it happening again. 1 in 200 didnt sound low risk when considering origionally we were told Kian being born with whs was a 1 in 90,000 chance!
The next morning we rung and told the dr we wanted to go ahead with the test on the baby. This is something that not everyone would choose to do or agree with but it was our decision.
We were booked in roughly going on my dates so that I would have a CVB test on the baby at 11 weeks. This was booked a the RVI. I was very nervous, worked up, anxious, frightened about this test. What if I miscarried? What is the results comes back bad? It was a horrible run up to the test and one where I felt I could not just let myself enjoy the pregnancy. It is very easy for people to say, it wont happen again but when you care for a child with a disability, it is heartbreaking at times. Not for your own selfish reasons but for what your child goes through and what they wont be able to access in life. But I must add, I hope that I give Kian the best quality of life possible and the most opportunities possible. And believe me he is very happy!
The day of the test came and I knew we would meet with a cousellor from genetics. I wasnt prepared for them to try and talk us out of the test. It clairified how serious this test was and they asked if we wanted to wait for the amneio at 16 weeks. I had some time alone with Craig and we spoke it over and agreed we wanted to still go ahead with the test if safe as possible. We had been told that the dr would not go ahead with test if she thought there were too many risks. So we went in and first of all saw our baby on the screen and the heart beating. That was a relief because it had been something I had worried about, getting there and there being no heart beat. Where the placenta was, it was not in the best place for the test to go ahead as the dr would have a struggle to get there. They said instead of a needle through the tummy they could try vaginally but we had already decided no to that as there was a greater risk. We booked in for the amneiotesis at 16 weeks.
Going home, I had thought we would have had the test. I was relieved I hadnt had it, but now seeing the baby move and heart beat I did have second thoughts about going for the amneio. Armed with scan pictures I felt like we still couldnt let everyone know our news yet even though I was 12 weeks.
So the amneio was at the beginning of december and I did go ahead with it. I think I would have still went ahead with the amneio anyway as I felt I wanted to enjoy the pregnancy but couldnt with fear of the unknown.
3 days after the test I found out the quicker results which was a count of the chromosomes. We were told that the results up to now were fine and that we had no worries about syndromes such as downs syndrome amongst others. We would find out the results for other chromosome abnormalities including whs in 2 weeks as they would have to grow what they had took from the baby. We did find out that day also though that we were having a girl. That was quite emotional. Then last monday I received the call to say that all the test results have came back fine. It was such good news to hear. So though chromosomes arent the only problems that can arise, it is a weight lifted!
Kian will be 4 next week, I cant believe where the time has gone. His progress is very very slow, but he makes it and he has fun in the meantime. Seizures arent completely under control but they seem to arise when he is poorly. My mission of 2011 is to get Kian into a school which meets his needs and challenges him too. This is a whole new stage for us, but hopefully we can get it right. I know it is very exiting to think of Kian with his little sister xxx
Wednesday 29 December 2010
Monday 20 September 2010
An update on the little fella
Things are going pretty ok. Kian is well and healthy though sometimes I regret admitting to that, as there can be something lurking around the corner.
We are still persisting with the hearing aids. At his last ent appointment the dr said his ears and grommets looked fine. We go back in 2 months for a hearing test and possibly new moulds for the aids. I dont think the hearing aids bother Kian, but he is terrible for pulling them out now, but he does this with a smile and mishief in his eyes.
Physio is going well. We have some ideas of getting up and down stairs which we are working on. We are aiming to bum shuffle down stairs and to crawl up them. When Kian is in the mood it works really well, otherwise that mischief returns to those eyes and it is, lets try another day. We are still using the lycra, and I feel it is hard to tell whether it does make a difference or not, but I am pleased we have it to try it.
Speech is going more slowly than anything. It is hard to know what Kian's hearing is, but he does understand alot of what is being said to him. That is at Kian's stage, not maybe the average 3 1/2 year olds understanding. I am attending a meeting on wednesday which will possibly turn into workshops for parents. They will be based on the hanen way of progression of communication.
Kian had two weeks back at his special nursery after summer holidays and we had a few issues. First week he came home on transport wet through two layers of clothes, top and bottom from playing in the water, then the next day he came home without his coat (not for the first time), then the second week he came home before 12pm (school finishes at 12), his hearing aids were in his bag minus their batteries and his lycra had not been put back on after swimming. There was no communication of any of this in his home school book. I called to find out what time Kian finished and I was told someone would call me back. His teacher called back and told me sometimes they finish at 11.45 because they sometimes start at 8.45. This was strange as our letter of pre school times is 9-12 and Kian doesnt get picked up till 8.45. She went on to tell me that the specialist professions had told her not to put his aids and lycra back on after swimming. The way the conversation had been I felt fobbed off and decided to keep Kian off nursery the rest of the week until we could feel comfortable of what was happening at school. Myself and Craig went into school today to meet with the head. She told us that sometimes Kian could be put on his transport before 12 if it was there,and they had sung there home song and had their coats ready. I asked why we were told that Kian would finish school initially at 12 then if that was the case. She said she would look into it. It may seem finicky but I need a level of consistency as well as Kian. I could have well have been not at home the day Kian returned home before he was even expected to be finished. We spoke of how the professionals had told us that hearing aids and lycra were fine to be put back on after swimming. The head told us that they were obviously being given different information. I am more inclined to think that the teacher made an excuse because I asked the question. I am realistic and human, so if Kian does come home without his lycra on or his hearing aids in, I can fully accept that every day is not going to run smoothly, but I dont expect to be fobbed off.
The end result is that before our meeting, the head has instructed staff to put bags and coats in the classroom before they finish so everything goes home, Kian is to be checked after water play and changed if nesicary. A care plan will be put together so that at home we know what to expect is happening at school. The professionals are to give there instructions so home and school have the same information. I later got a phone call to say that transport could arrive before 12 but the students would not be out of school until 12. We did make a point of saying that whilst Kian is in their care at school we do trust their decision of what is best for school. But we do need to hear the truth.
???? For me I feel that this has been unnessicary stress. All of the above should be happening anyway. All children are their own individual person with different characteristis, but Kian goes to a nursery where the children are as above but they have their difficulties also. Im glad we had the meeting, but it is a shame it had to come to that. The head teacher has acted promtly and hopefully everything has or will be resolved.
In the year Kian has been at nursery school I have tried to help out at the school, whether by selling raffle tickets, sending in bits for raffles, supporting their fayre, but I still need to and will speak up when things arent right for Kian. Is it possible to have the balance?? I would like to think so. I have heard many stories of professionals becoming defensive to parents and sometimes other services. I feel I have had a few encounters like that myself now. Parents do not want to do anything to hinder their childs care but sometimes things have to be said. I do wonder why some people are automatically defensive to parents? Not sure I will ever know the answer!
We are still persisting with the hearing aids. At his last ent appointment the dr said his ears and grommets looked fine. We go back in 2 months for a hearing test and possibly new moulds for the aids. I dont think the hearing aids bother Kian, but he is terrible for pulling them out now, but he does this with a smile and mishief in his eyes.
Physio is going well. We have some ideas of getting up and down stairs which we are working on. We are aiming to bum shuffle down stairs and to crawl up them. When Kian is in the mood it works really well, otherwise that mischief returns to those eyes and it is, lets try another day. We are still using the lycra, and I feel it is hard to tell whether it does make a difference or not, but I am pleased we have it to try it.
Speech is going more slowly than anything. It is hard to know what Kian's hearing is, but he does understand alot of what is being said to him. That is at Kian's stage, not maybe the average 3 1/2 year olds understanding. I am attending a meeting on wednesday which will possibly turn into workshops for parents. They will be based on the hanen way of progression of communication.
Kian had two weeks back at his special nursery after summer holidays and we had a few issues. First week he came home on transport wet through two layers of clothes, top and bottom from playing in the water, then the next day he came home without his coat (not for the first time), then the second week he came home before 12pm (school finishes at 12), his hearing aids were in his bag minus their batteries and his lycra had not been put back on after swimming. There was no communication of any of this in his home school book. I called to find out what time Kian finished and I was told someone would call me back. His teacher called back and told me sometimes they finish at 11.45 because they sometimes start at 8.45. This was strange as our letter of pre school times is 9-12 and Kian doesnt get picked up till 8.45. She went on to tell me that the specialist professions had told her not to put his aids and lycra back on after swimming. The way the conversation had been I felt fobbed off and decided to keep Kian off nursery the rest of the week until we could feel comfortable of what was happening at school. Myself and Craig went into school today to meet with the head. She told us that sometimes Kian could be put on his transport before 12 if it was there,and they had sung there home song and had their coats ready. I asked why we were told that Kian would finish school initially at 12 then if that was the case. She said she would look into it. It may seem finicky but I need a level of consistency as well as Kian. I could have well have been not at home the day Kian returned home before he was even expected to be finished. We spoke of how the professionals had told us that hearing aids and lycra were fine to be put back on after swimming. The head told us that they were obviously being given different information. I am more inclined to think that the teacher made an excuse because I asked the question. I am realistic and human, so if Kian does come home without his lycra on or his hearing aids in, I can fully accept that every day is not going to run smoothly, but I dont expect to be fobbed off.
The end result is that before our meeting, the head has instructed staff to put bags and coats in the classroom before they finish so everything goes home, Kian is to be checked after water play and changed if nesicary. A care plan will be put together so that at home we know what to expect is happening at school. The professionals are to give there instructions so home and school have the same information. I later got a phone call to say that transport could arrive before 12 but the students would not be out of school until 12. We did make a point of saying that whilst Kian is in their care at school we do trust their decision of what is best for school. But we do need to hear the truth.
???? For me I feel that this has been unnessicary stress. All of the above should be happening anyway. All children are their own individual person with different characteristis, but Kian goes to a nursery where the children are as above but they have their difficulties also. Im glad we had the meeting, but it is a shame it had to come to that. The head teacher has acted promtly and hopefully everything has or will be resolved.
In the year Kian has been at nursery school I have tried to help out at the school, whether by selling raffle tickets, sending in bits for raffles, supporting their fayre, but I still need to and will speak up when things arent right for Kian. Is it possible to have the balance?? I would like to think so. I have heard many stories of professionals becoming defensive to parents and sometimes other services. I feel I have had a few encounters like that myself now. Parents do not want to do anything to hinder their childs care but sometimes things have to be said. I do wonder why some people are automatically defensive to parents? Not sure I will ever know the answer!
Friday 23 July 2010
Following In Footsteps
We have been on this journey of disability for over 2 1/2 years now. People speak of the norm, and some would say my family is not the norm. But for us the majority of the time my life feels pretty normal. Sometimes you do get a harsh reminder that you are not perceived as normal. For me this is coming to terms with how relaxed people are using words that are sometimes directed towards disability. I know these words are not being directed to Kian but I am probably surprised how easy these words can be said. I had a conversation with a friend recently and we spoke of the word handicapped, how not many people use that word now and it seems strange at times to hear it, though a few years ago that was the word that I would now say has been replaced with disabled. I wonder if the word disabled will be replaced in time???
Craig told me today that there is nothing better than seeing Kian's smile up close. Im sure that is the opinion of most parents, but Craig tells me that when he smiles that is what he remembers when he thinks of him at night when he cant sleep. Craig does worry what might happen to Kian if Craig and I arent there for him anymore. I have heard some tragic stories of children with WHS. It is tragic I can only imagine to lose any child. But as I have said before I dont plan on Kian going anywhere, I cant let myself think that way. What Craig said to myself which I will always remember is that in Kian's mind he is happy, he knows no other. And that I am grateful for.
When Kian was diagnosed I was desparate for information. It was the medical profession that I was looking to for answers. But like I hear over and over again from parents of children with additional needs or a disability it is parents who you most learn from. As much as I share what I can in this blog, I am quite a private person and one not to share my feelings. Private you may think, writing all for anyone to read? Like any parent in my situation I wonder why this has happened to my family. Sometimes you do not want to hear that special children only go to special parents. I am grateful to have Kian and I get so much joy and pleasure from him. Alongside that though goes the worries with the seizures and the weakness of his immune system. But the good times more than outweigh the bad.
It is lovely to hear what other WHS children are up to. I wonder if Kian will achieve that paricular milestone. WHS has such a wide spectrum, you have to keep teaching and encouraging. I have heard fantastic stories of what children are achieving. Some people may wonder why such milestones are celebrated but it is a massive achievement for our children. The children who have been wrote off or extremely underestimated.
Though Kian is only 3 1/2, there are families with younger babies that you come in touch with and you hope that their children wont suffer specific symptoms of the condition. One of these would be seizures. Kian feeds orally which we are grateful for but the seizures for us are still not under complete control. There are so many different problems that can occur with whs.
For myself it has been lovely to meet new families with children with WHS. For families I do feel it is sad for the children to have the syndrome, but nothing stops these children. They and their families keep on striving to do their best. What I found though is the new families coming through the process, you hope their children dont have any of the symptoms such as seizures, and many more things. It is possible for some children not to suffer with them. But I hear of new families going through the process of what we went through over 2 years ago. You really dont want their child or family to go through that difficulty. But then you hear that another child is suffering from seizures or they will be giving a feeding tube. You hope for children to avoid that difficulty even if your child has that problem.
From the parents that I have met, I can imagine that Kian is going to follow along certain footsteps, also I can see that my feelings and emotions will go alongside certain ones. I can also see new families going through what we have. I really hope for the world to progress with disability and for WHS so much more awareness needs to be made. Our main focus is Kian but I am aware of children who will follow in his footsteps and I feel this is so important too.
Kian does have a disadvantage in life, but there is so much possible for him. He will develop and achieve and we as his parents will help him do that.
We love that mite very much xxx
Craig told me today that there is nothing better than seeing Kian's smile up close. Im sure that is the opinion of most parents, but Craig tells me that when he smiles that is what he remembers when he thinks of him at night when he cant sleep. Craig does worry what might happen to Kian if Craig and I arent there for him anymore. I have heard some tragic stories of children with WHS. It is tragic I can only imagine to lose any child. But as I have said before I dont plan on Kian going anywhere, I cant let myself think that way. What Craig said to myself which I will always remember is that in Kian's mind he is happy, he knows no other. And that I am grateful for.
When Kian was diagnosed I was desparate for information. It was the medical profession that I was looking to for answers. But like I hear over and over again from parents of children with additional needs or a disability it is parents who you most learn from. As much as I share what I can in this blog, I am quite a private person and one not to share my feelings. Private you may think, writing all for anyone to read? Like any parent in my situation I wonder why this has happened to my family. Sometimes you do not want to hear that special children only go to special parents. I am grateful to have Kian and I get so much joy and pleasure from him. Alongside that though goes the worries with the seizures and the weakness of his immune system. But the good times more than outweigh the bad.
It is lovely to hear what other WHS children are up to. I wonder if Kian will achieve that paricular milestone. WHS has such a wide spectrum, you have to keep teaching and encouraging. I have heard fantastic stories of what children are achieving. Some people may wonder why such milestones are celebrated but it is a massive achievement for our children. The children who have been wrote off or extremely underestimated.
Though Kian is only 3 1/2, there are families with younger babies that you come in touch with and you hope that their children wont suffer specific symptoms of the condition. One of these would be seizures. Kian feeds orally which we are grateful for but the seizures for us are still not under complete control. There are so many different problems that can occur with whs.
For myself it has been lovely to meet new families with children with WHS. For families I do feel it is sad for the children to have the syndrome, but nothing stops these children. They and their families keep on striving to do their best. What I found though is the new families coming through the process, you hope their children dont have any of the symptoms such as seizures, and many more things. It is possible for some children not to suffer with them. But I hear of new families going through the process of what we went through over 2 years ago. You really dont want their child or family to go through that difficulty. But then you hear that another child is suffering from seizures or they will be giving a feeding tube. You hope for children to avoid that difficulty even if your child has that problem.
From the parents that I have met, I can imagine that Kian is going to follow along certain footsteps, also I can see that my feelings and emotions will go alongside certain ones. I can also see new families going through what we have. I really hope for the world to progress with disability and for WHS so much more awareness needs to be made. Our main focus is Kian but I am aware of children who will follow in his footsteps and I feel this is so important too.
Kian does have a disadvantage in life, but there is so much possible for him. He will develop and achieve and we as his parents will help him do that.
We love that mite very much xxx
Thursday 15 July 2010
A July Update
Kian is quite well at the moment. Sometimes I feel like I am just waiting for him to catch another cold, or have another seizure. But from the last bout of seizures I knew I was going to make the most of when Kian is healthy. As Kian is getting older there is definitely less colds and illnesses, and the seizures you come to live with. Epilepsy though is unpredictable and you cant take it for granted. Some people are unaware of epilepsy but it is all around us. Some people manage with it, some are ashamed of it and some of scared of it.
This week has been a mixture of news for whs children. As I log onto facebook to catch up with what has been happening with other families, there is one little girl quite poorly in hospital, another little girl taking steps with her walker, and then another little boy leaving hospital after quite an ordeal. I feel with the connection of these families that we all share the joy of hitting milestones, and defying the Drs odds, but we also feel the pain and sadness of when one of our children are poorly. I am so grateful for the support network of other whs families, it is a massive lifeline in my life.
Alot is going on at home with finding out from services what we need for Kian that can make life easier. At this time things are going pretty straight forward. I hope it lasts.
Kian is looking steadier on his feet when he does his supported walking. I had imagined that Kian would need to be able to stand static without support before being able to walk, but our physio has said she has lots of patients who cant stand but manage to walk. That is encouraging about Kian. Kian is so wobbly that I cant imagine him standing independently for a long time. But we are going to keep walking him about the house and to and from the car.
Our OT have give us some nice new exercises to try which will be great fun and interesting, and em messy I think.
Kian has a dummy which is mainly for during the night. Im not sure whether I should be withdrawing it from him because of his teeth. His teeth do not look fantastic and there is a history connected with whs that has made me expect it. His dummy is something that he can get himself and use if he wants to. It is one of the little choices Kian can make for himself and it also does comfort him. Im not sure on this one???
Kian breaks up from nursery for the summer holidays next week, I cant wait!
This week has been a mixture of news for whs children. As I log onto facebook to catch up with what has been happening with other families, there is one little girl quite poorly in hospital, another little girl taking steps with her walker, and then another little boy leaving hospital after quite an ordeal. I feel with the connection of these families that we all share the joy of hitting milestones, and defying the Drs odds, but we also feel the pain and sadness of when one of our children are poorly. I am so grateful for the support network of other whs families, it is a massive lifeline in my life.
Alot is going on at home with finding out from services what we need for Kian that can make life easier. At this time things are going pretty straight forward. I hope it lasts.
Kian is looking steadier on his feet when he does his supported walking. I had imagined that Kian would need to be able to stand static without support before being able to walk, but our physio has said she has lots of patients who cant stand but manage to walk. That is encouraging about Kian. Kian is so wobbly that I cant imagine him standing independently for a long time. But we are going to keep walking him about the house and to and from the car.
Our OT have give us some nice new exercises to try which will be great fun and interesting, and em messy I think.
Kian has a dummy which is mainly for during the night. Im not sure whether I should be withdrawing it from him because of his teeth. His teeth do not look fantastic and there is a history connected with whs that has made me expect it. His dummy is something that he can get himself and use if he wants to. It is one of the little choices Kian can make for himself and it also does comfort him. Im not sure on this one???
Kian breaks up from nursery for the summer holidays next week, I cant wait!
Sunday 27 June 2010
Emotional rollercoaster!
Our summer fayre is happening next saturday, which is to raise awareness of WHS and to raise funds to donate to Wolf Hirshhorn Syndrome Trust. I also hope that families have a lovely day and enjoy themselves.
Organising this event has been a rollercoaster of emotions. Lots of ups and down. We have had companies bluntly tell us that they cant support our cause. In this current econmic climate that is totally understandable. On the occasions that I have been in a store asking for support in some way, generally with a friend, it is hard when someone does not want to even hear what you are arranging your event for. But the people that say yes, more than make up for the harsh no's. I have been so touched when people donated for personal reasons. Sometimes you really dont know what peoples stories are!
The main thing I probably wanted to explain in this blog is about a new experience.
It is difficult to put into words.
My Kian as you will all probably know was born in 2007 and I feel very lucky to have him. Last week when having an assessment done at home, the assessor said "he drew the short straw". I replied " well maybe, but he is lovely". The lady didnt stay long and we were okayed for our assessment. It is hard sometimes as you want people to know they are luckier in life than others, but as I have said before I do not feel unlucky to have Kian. When I check on him in bed and I know he is fine I look at his innocent little face, his cute little toes and I get that surge of love.
But I am now in contact with parents of children with whs who have lost their fight for life. This is hard, but I am so privilaged to become to know them. I look at pictures of beautiful, innocent children who should be here. Each picture has a resemberlance of Kian, and that is because of the syndrome. Our children tend to have a look of each other at some point. I am confused of how I should feel. I feel blessed because I have Kian, but so sad for anothers loss. Craig told me tonight, what would he do if something happens to Kian. I need to be reminded sometimes that Craig feels how I do at times. He does really worry like I do. Reality is something that just all of a sudden hits you in the face. I dont plan on Kian going anywhere, but more needs to be done to look after our whs babes. I know why Im trying to raise awareness of the syndrome, our babies our precious no matter what age, and they need looked after. I want to help make a difference no matter how small!
I am not a religious person by nature, but bless all our children past and present xxx
Organising this event has been a rollercoaster of emotions. Lots of ups and down. We have had companies bluntly tell us that they cant support our cause. In this current econmic climate that is totally understandable. On the occasions that I have been in a store asking for support in some way, generally with a friend, it is hard when someone does not want to even hear what you are arranging your event for. But the people that say yes, more than make up for the harsh no's. I have been so touched when people donated for personal reasons. Sometimes you really dont know what peoples stories are!
The main thing I probably wanted to explain in this blog is about a new experience.
It is difficult to put into words.
My Kian as you will all probably know was born in 2007 and I feel very lucky to have him. Last week when having an assessment done at home, the assessor said "he drew the short straw". I replied " well maybe, but he is lovely". The lady didnt stay long and we were okayed for our assessment. It is hard sometimes as you want people to know they are luckier in life than others, but as I have said before I do not feel unlucky to have Kian. When I check on him in bed and I know he is fine I look at his innocent little face, his cute little toes and I get that surge of love.
But I am now in contact with parents of children with whs who have lost their fight for life. This is hard, but I am so privilaged to become to know them. I look at pictures of beautiful, innocent children who should be here. Each picture has a resemberlance of Kian, and that is because of the syndrome. Our children tend to have a look of each other at some point. I am confused of how I should feel. I feel blessed because I have Kian, but so sad for anothers loss. Craig told me tonight, what would he do if something happens to Kian. I need to be reminded sometimes that Craig feels how I do at times. He does really worry like I do. Reality is something that just all of a sudden hits you in the face. I dont plan on Kian going anywhere, but more needs to be done to look after our whs babes. I know why Im trying to raise awareness of the syndrome, our babies our precious no matter what age, and they need looked after. I want to help make a difference no matter how small!
I am not a religious person by nature, but bless all our children past and present xxx
Monday 31 May 2010
Risk management or Not!
Kian had 3 seizures in the space of 8 hours on wednesday. Tuesday night he did have a little sickness that came completely out of the blue. He then got a raging temperature that I tried to manage the way we normally do, but a little while later it came back and Kian fitted. Always it is a horrible thing to see. I didnt completely expect the second one as there was no temperature. I didnt have to use midazolam for Kian to come out of them but he went a little over 5 mins. There was 5 hours between the 1st and 2nd then it was 3 hours later he fitted again. Those 5 minutes that you are waiting to see if he can come out of a fit by himself without meds is a long old 5 minutes. I was contemplating calling an ambulance with them being quite close together for Kian. He came out of it and I took him straight to hospital. We live 5-10 minutes from it which I never contemplated would come in so handy. I called Kian's paediatrician before we left as we had an appointment arranged that morning, and to let her know what had happened.
At the hospital though he was a fraction of what his temp had felt previously he was 38.9. They gave a dose of neurofen and took his temp a little while later and it had actually went higher.
Eventually his temp came down and we got a urine sample using a pad in Kians nappy. We were referred to childrens assessment unit. They told us the sample showed infection but they wanted us to do another straight into a bottle. We were at the hospital from 9.30 - 5.30pm and did not get another sample. We agreed to go home and get a sample there and take back to hospital the next day. They could feel something on Kian's chest but said no more about it. They had been in touch with Kian's paediatrician and she said that if there showed a big infection (neumonÃa), then that was why he fitted and we shouldnt up his meds, otherwise it was up to ourselves to decide to up from 5ml to 6ml.
We decided to up the med. It is a very hard decision to make for parents as ideally I dont want Kian on meds which possibly make him more sleepy, affect his development even more and can cause behaviour problems but Kian doesnt have this many fits, even when he is poorly!
I was at a meeting where I and another parent are giving our opinions of a new service being created in our local authority. I spoke of how Kian had been poorly, when I mentioned his meds, and how at the national conference we were advised that kidneys should be monitored, and our Dr, (who I do have alot of time and respect for) decided instead of doing a yearly test said we will wait until something crops up. Someone at this meeting said "they are not managing Kian's health but they are using risk management". It took what that person said, who has never met my child to realise that is exactly how I feel. WHY do we have to wait until something goes wrong?????????? We had an agreement between the Dr that if Kian fitted twice we would up his meds, now he had 5 and the decision was still up in the air. Dont get me wrong, medicating isnt the answer to everything but I know Kian. I know with the syndrome there is a good chance of Kian outgrowing his fits, and I pray for this to happen. But fits can be dangerous- Fact-
I have got used to the fits but I dont want to become too complacent that I dont recognise he needs more help, and it is very hard to make that opinion while your child is fitting.
Craig came home that day from work, as most people know he normally only gets home on the weekend. The next day as our little precious being was lying in his travel cot where we could see him constantly, Craig said he didnt think Kian would have a long life. This isnt the first time this conversation has came about and Im sure it wont be the last. Some people may think that is a strange thing to say, but in our world you dont know what is round the corner, and though that can happen to anyone, we become to expect things to go wrong. Then the next day at the meeting I speak of Kian and Craig and say Im not expecting Kian to be going anywhere. Another parent who has had many battles to fight says that she is the opposite she doesnt know whether her child might go at anytime. That is what it can be like in the everyday life of someone with a disabled child. If some professionals could only understand that! I dont expect Kian to be going anywhere, and the main reason being I cant imagine a world without my little Kian. Kian who after so many days of looking drained and out of it, has smiled all day. He has been full of mischief, he made it know to be when he wasnt happy or when he was really happy.
Is he worthy of "risk managment", I think not!
I feel my blogs can be serious and sad at times and I am hoping they do become happy and witty, because Kian is a happy little person and I do enjoy him so much. But this is our journey, as it is!
At the hospital though he was a fraction of what his temp had felt previously he was 38.9. They gave a dose of neurofen and took his temp a little while later and it had actually went higher.
Eventually his temp came down and we got a urine sample using a pad in Kians nappy. We were referred to childrens assessment unit. They told us the sample showed infection but they wanted us to do another straight into a bottle. We were at the hospital from 9.30 - 5.30pm and did not get another sample. We agreed to go home and get a sample there and take back to hospital the next day. They could feel something on Kian's chest but said no more about it. They had been in touch with Kian's paediatrician and she said that if there showed a big infection (neumonÃa), then that was why he fitted and we shouldnt up his meds, otherwise it was up to ourselves to decide to up from 5ml to 6ml.
We decided to up the med. It is a very hard decision to make for parents as ideally I dont want Kian on meds which possibly make him more sleepy, affect his development even more and can cause behaviour problems but Kian doesnt have this many fits, even when he is poorly!
I was at a meeting where I and another parent are giving our opinions of a new service being created in our local authority. I spoke of how Kian had been poorly, when I mentioned his meds, and how at the national conference we were advised that kidneys should be monitored, and our Dr, (who I do have alot of time and respect for) decided instead of doing a yearly test said we will wait until something crops up. Someone at this meeting said "they are not managing Kian's health but they are using risk management". It took what that person said, who has never met my child to realise that is exactly how I feel. WHY do we have to wait until something goes wrong?????????? We had an agreement between the Dr that if Kian fitted twice we would up his meds, now he had 5 and the decision was still up in the air. Dont get me wrong, medicating isnt the answer to everything but I know Kian. I know with the syndrome there is a good chance of Kian outgrowing his fits, and I pray for this to happen. But fits can be dangerous- Fact-
I have got used to the fits but I dont want to become too complacent that I dont recognise he needs more help, and it is very hard to make that opinion while your child is fitting.
Craig came home that day from work, as most people know he normally only gets home on the weekend. The next day as our little precious being was lying in his travel cot where we could see him constantly, Craig said he didnt think Kian would have a long life. This isnt the first time this conversation has came about and Im sure it wont be the last. Some people may think that is a strange thing to say, but in our world you dont know what is round the corner, and though that can happen to anyone, we become to expect things to go wrong. Then the next day at the meeting I speak of Kian and Craig and say Im not expecting Kian to be going anywhere. Another parent who has had many battles to fight says that she is the opposite she doesnt know whether her child might go at anytime. That is what it can be like in the everyday life of someone with a disabled child. If some professionals could only understand that! I dont expect Kian to be going anywhere, and the main reason being I cant imagine a world without my little Kian. Kian who after so many days of looking drained and out of it, has smiled all day. He has been full of mischief, he made it know to be when he wasnt happy or when he was really happy.
Is he worthy of "risk managment", I think not!
I feel my blogs can be serious and sad at times and I am hoping they do become happy and witty, because Kian is a happy little person and I do enjoy him so much. But this is our journey, as it is!
Monday 17 May 2010
Confused!
Kian had another seizure last monday, his known previous one before that was Feb. He was absaloutely fine on the monday morning and I took him to nursery as norm. A week or two before he had had a cold and there does seems to be lots of colds and bugs going around. At 1pm I got the call from his nursery to say he had had a fit. I got to the nursery within 5 mins. They had administered the midazolam though by how they describe he was possibly coming out of the fit before they gave it. It was the first time that they had saw him have one and I think it is very difficult those first times knowing what to expect. They said he had been happy as normal beforehand babbling and playing and then had just flopped down. They looked after him really well.
Because he did not seem poorly, I and his physio (who was co-incidently at the nursery) spoke of whether he was ready for an increase of meds due to growing. I called our paediatrician to see if we should up meds. It is our normal agreement that if Kian has 2 fits we up. His first one being Feb. She decided not to as his dose it quite high of what he is on. My next appointment has been brought forward where I will discuss this. He will be weighed there and see if there is a growing need to up his meds. I think we should have got him weighed last week and discussed meds after his weigh in. Dont get me wrong Kian is growing though Im not sure it has been a rapid growth spurt, as we know it is hard for our children to put on weight. I more than make up for that for Kian!
That night we had an awful night with Kian. He had a raging temp, though thankfully he didnt fit. With stripping down, damp compress, calpol and eventually neurofen, the temp passed but he couldnt settle. We got him to the doctors that morning. The dr said she thought he had a really bad infection but wasnt sure where. His ears appeared fine. His throat was a little pink. She said his legs were really cold and though she didnt think it was meningitis, we had to be aware that could be a sign. She gave us antibiotics and asked be to get a urine sample before the antibiotics were started. The sample was not back when I was told to ring so I will hopefully get the results today.
ENT appointment was yesterday. Our appointment was very rushed as they were running quite behind and Craig had to get back to work. Anyway, we discussed the palate and he had a little feel as Kian had fell asleep. He thinks it feels normal, but there are other ways of looking but do we go down that route now? And would it actually help? Kians hearing test was terrible, alot of the time he is just not interested. But as it happens he has fluid in both of his ears. His one grommet left in is on its way out. Do we go ahead with more grommets or see if it clears up itself? We have said yes to more grommets, with the thinking that by the time the op date comes through, if the fluid has gone then we dont go ahead. Last year we waited and the fluid didnt clear, so we are going to try it this way. I dont want Kian to go through having an anethestic again, it was awful, but when Kian first had grommets he went seizure free for 9 months. Maybe co incidental, but it possibly did help. Also Ive been told that with glue ear you hear echoey sounds, if it is like that for Kian it must be so confusing.
Sometimes I wonder if people think, you have a disabled child, just accept it and stop trying to find things to mess on with Kian. I am proud of my little Kian, his disabilty is part of him and that is not going away. But there are so many disadvantages that Kian has that I will look into as many things as I can. If it is something that myself and Craig think is worth a try then we have to try, but we always think of all the outcomes and take on expertise of professionals as well as other parents opinions. There are no magic wands for our children and no miracle cures. Kian has alot of hope and alot of love around him and that is ultimately the most important thing!
Because he did not seem poorly, I and his physio (who was co-incidently at the nursery) spoke of whether he was ready for an increase of meds due to growing. I called our paediatrician to see if we should up meds. It is our normal agreement that if Kian has 2 fits we up. His first one being Feb. She decided not to as his dose it quite high of what he is on. My next appointment has been brought forward where I will discuss this. He will be weighed there and see if there is a growing need to up his meds. I think we should have got him weighed last week and discussed meds after his weigh in. Dont get me wrong Kian is growing though Im not sure it has been a rapid growth spurt, as we know it is hard for our children to put on weight. I more than make up for that for Kian!
That night we had an awful night with Kian. He had a raging temp, though thankfully he didnt fit. With stripping down, damp compress, calpol and eventually neurofen, the temp passed but he couldnt settle. We got him to the doctors that morning. The dr said she thought he had a really bad infection but wasnt sure where. His ears appeared fine. His throat was a little pink. She said his legs were really cold and though she didnt think it was meningitis, we had to be aware that could be a sign. She gave us antibiotics and asked be to get a urine sample before the antibiotics were started. The sample was not back when I was told to ring so I will hopefully get the results today.
ENT appointment was yesterday. Our appointment was very rushed as they were running quite behind and Craig had to get back to work. Anyway, we discussed the palate and he had a little feel as Kian had fell asleep. He thinks it feels normal, but there are other ways of looking but do we go down that route now? And would it actually help? Kians hearing test was terrible, alot of the time he is just not interested. But as it happens he has fluid in both of his ears. His one grommet left in is on its way out. Do we go ahead with more grommets or see if it clears up itself? We have said yes to more grommets, with the thinking that by the time the op date comes through, if the fluid has gone then we dont go ahead. Last year we waited and the fluid didnt clear, so we are going to try it this way. I dont want Kian to go through having an anethestic again, it was awful, but when Kian first had grommets he went seizure free for 9 months. Maybe co incidental, but it possibly did help. Also Ive been told that with glue ear you hear echoey sounds, if it is like that for Kian it must be so confusing.
Sometimes I wonder if people think, you have a disabled child, just accept it and stop trying to find things to mess on with Kian. I am proud of my little Kian, his disabilty is part of him and that is not going away. But there are so many disadvantages that Kian has that I will look into as many things as I can. If it is something that myself and Craig think is worth a try then we have to try, but we always think of all the outcomes and take on expertise of professionals as well as other parents opinions. There are no magic wands for our children and no miracle cures. Kian has alot of hope and alot of love around him and that is ultimately the most important thing!
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