Well I knew it was round the corner, Kian has a seizure on monday. He had been a little off over the weekend, but he seemed ok on monday so I took him to nursery as he really does love it. I said he had been a little off and to ring me if he didnt seem himself. They called me at lunch time and I brought him home. I put his favourite In the night garden programme on and I went into the kitchen to get him a dose of neurofen as he had already had calpol at nursery. When I came back through he was bent over in his chair fitting. I could have been classed as an absence seizure and his body was making no movement, but it went on for roughly 3 mins. I had his dose of midazolam ready but I was so pleased that he came out of it himself before the 5 mins. This has been the first time this has happened and Im hoping it to be a good thing. I had called the doctors before his fit to try and get an appointment to get him checked over but I was told to call back in the morning. After the fit I called again to get him checked out. We got an appointment and the doctor informed us Kian had an ear infection. It can all be a vicious circle as he doesnt seem to be moving his bowels which isnt normal for Kian. He has been given antibiotics and is seeming better already. We agreed with our consultant that we would contact her if Kian had two seizures, then she would up his meds. Luckly he did only have the one so we will see how things go. Count down begins again for the seizures!
Yesterday I attended a session on advacy for parents. It was really good and I did come away with some useful tips and advice. In this kind of environment parents and carers have had some terrible experiences and really want to off load them. Will it always be parents v professionals? I hope not but there are good professionals out there but you can also come across some not so good, maybe the job has worn them down, Im not sure.
I do have an issue still about Kian's speech therapy. Most people who know me are aware that when I get a bit between my teeth it is very hard for me to let go. This only developed in me once I had my child. I am not perfect, but I want and try for what is best for him. Maybe I will get it wrong sometimes, Im only human. But my little boy is under estimated at times. A solution to our problem would be for Kian to have a one to one session of speech therapy at nursery at least once per week for that person to get to know Kian and for him to be comfortable to engage with that person. I really dont think that is an unreasonable request. We shall see what happens as I have voiced my concerns. Kian is only 3, but communication is something that can be worked on.
A great surprise this week was finding out there is another family in our area with a child with whs. Their child is 4 months old and is a gorgeous little fella. They actually have the same consultant who we had at diagnosis. He told them he used to have a patient with WHS. Because of what they had been told of the condition and because he did not say anymore of us, they did think that the patient had died. Luckly we share a dietician who liased between us to see if we wanted to get in touch. The dietician couldnt believe it, she said, to never have a child with whs, and now she has two in her caseload is unbelievable. I wont go into this families details as it is their story to tell if they want, but to hear certain things that they were told about the syndrome is awful. It crossed my mind, how would I have felt or reacted to be told certain things before Kian was born or when he was just born. In a way, I cant believe Kian wasnt diagnose till 10 months. A parent has asked me before if I really didnt know anything. A relative today said she remembers me thinking there was a problem, but lots of people said that because Kian was small, it would just take time for him to catch up.
It is sad for another child to have the syndrome as it does bring difficulties but I hope that we can help and support this family in any way possible. But though I know that there are some really tough times, and at times you dont know why you have been chosen for you and your child to follow this different kind of life, having a disabled child isnt the end of the world. Sometimes you have no control over what happens but you can only try to do your best like any parent.
Wednesday, 24 March 2010
Thursday, 18 March 2010
Quick update
Kian has got his appointment through to be measured for some lycra shorts. This is at the end of April. I think his top half of his body could be helped also but we will see how the shorts go. Hopefully this will give more stability for Kian to stand and hopefully take those steps for his physio goal!
I went to a makaton group yesterday at Kian's nursery. It was really good and I learned some new interesting signs. Most of them were food, yum, mine and Kian's favourite thing. Going to the group I think gives you more encouragement about signing. The therapist running the group was lovely. I also met a parent who has a little boy in Kian's class which was lovely. We will hopefully keep in touch.
Our OT is coming next week to see if she has a chair that Kian could use at home for activites. The one we have is a little young for him now. I was looking forward to going out and buying a little table and chair set for him, but if the OT has something more suitable we will go with it.
6 months for Kian without a seizure. You really do dread writing those words as you never know what is round the corner. He is doing really well at the moment and seems so happy and healthy. Fingers crossed.
I went to a workshop on tuesday for confident parenting. It was based on your children having behaviour issues. My reason for going was to be proactive about Kian and his behaviour. He gets so frustrated through lack of communication and mobility. I found it quite useful. Some stories you hear from parents, especially in mainstream school are horrendous!
Im off to a workshop next week ran by Afasic who are a speech and communication charity. This is about advocacy for parents. I think this will be greatly helpful! http://www.afasic.org.uk/
I went to a makaton group yesterday at Kian's nursery. It was really good and I learned some new interesting signs. Most of them were food, yum, mine and Kian's favourite thing. Going to the group I think gives you more encouragement about signing. The therapist running the group was lovely. I also met a parent who has a little boy in Kian's class which was lovely. We will hopefully keep in touch.
Our OT is coming next week to see if she has a chair that Kian could use at home for activites. The one we have is a little young for him now. I was looking forward to going out and buying a little table and chair set for him, but if the OT has something more suitable we will go with it.
6 months for Kian without a seizure. You really do dread writing those words as you never know what is round the corner. He is doing really well at the moment and seems so happy and healthy. Fingers crossed.
I went to a workshop on tuesday for confident parenting. It was based on your children having behaviour issues. My reason for going was to be proactive about Kian and his behaviour. He gets so frustrated through lack of communication and mobility. I found it quite useful. Some stories you hear from parents, especially in mainstream school are horrendous!
Im off to a workshop next week ran by Afasic who are a speech and communication charity. This is about advocacy for parents. I think this will be greatly helpful! http://www.afasic.org.uk/
Wednesday, 17 March 2010
Multi-disciplinary meeting
Last week we had Kian's multi-disciplinary meeting at nursery. Physio, OT, Speech, Kian's other nursery's key worker attended alongside, me, Craig and Kian's nursery teacher.
Overall it was a positive meeting. Alot was spoken of how Kian has come on in personality and determination. His target from his physio, is to take 2 independant steps. She said it was an ambitious target but she felt with work and encouragement it was possible. We are waiting for a walker for Kian and also an appointment at a clinic for him to be measured for a lycra garment. Hopefully this will give him more stability.
OT is still working along the same lines of trying to have him on his tummy. But because he is quite determined not to be handled doing this they are going to think of other activites to encourage his co-ordination.
His teacher at his nursery said she felt Kian had settled in well.
His nursery key worker from his private nursery had lots of positive things to say of Kian. She also had in mind to created a book with photos of me and Dad, and then his favourite toys, and to say the words to him. She has noticed him making different sounds to certain words, for example "hello", and "look at this mess".
Our speech therapist felt we could not assume that Kian is making a particular sound to a word or an object as he would have to understand what the word or object means. This is where I find a large problem! All children can be SO underestimated. I know what words and objects Kian understands. I will ask him where something is and he will get it, for example, his ball, chair, train, boat, igglepiggle, the list actually does go on. I dont want to be opposed to our therapists opinion but I feel that opinions like that need backed up, and it wasnt. She see's Kian briefly at nursery and informed us that he is too tired to participate in her activities, after a physical activity. So I wonder what is being done about that? Nothing until we persist and pester, which you really do get tired of having to do. I say this as my opinion at the moment. Kian has developed with communication but I cant help feel that we are being let down by this service and that the therapist doesnt really know Kian. We do not have a regular date to see her which I requested at the meeting, to have. I will meet with her after easter. I am planning to film Kian as much as possible to show what Kian is able to do. I hope this will help in some way. I really want to have a positive opinion about this service, but I dont at this time. I may be seen as an awkward parent for asking for help. The majority of professionals have not come across whs, does this make Kian any less important than children with more well known conditions/syndromes. All our children deserve the best possible service available and more.
The nursery are going to create some pictures for home and private nursery to use for recognition. I see this as a positive approach.
Kian's statement will be begun in September, which will determine what help he does need and where his needs would be best met!
Overall it was a positive meeting. Alot was spoken of how Kian has come on in personality and determination. His target from his physio, is to take 2 independant steps. She said it was an ambitious target but she felt with work and encouragement it was possible. We are waiting for a walker for Kian and also an appointment at a clinic for him to be measured for a lycra garment. Hopefully this will give him more stability.
OT is still working along the same lines of trying to have him on his tummy. But because he is quite determined not to be handled doing this they are going to think of other activites to encourage his co-ordination.
His teacher at his nursery said she felt Kian had settled in well.
His nursery key worker from his private nursery had lots of positive things to say of Kian. She also had in mind to created a book with photos of me and Dad, and then his favourite toys, and to say the words to him. She has noticed him making different sounds to certain words, for example "hello", and "look at this mess".
Our speech therapist felt we could not assume that Kian is making a particular sound to a word or an object as he would have to understand what the word or object means. This is where I find a large problem! All children can be SO underestimated. I know what words and objects Kian understands. I will ask him where something is and he will get it, for example, his ball, chair, train, boat, igglepiggle, the list actually does go on. I dont want to be opposed to our therapists opinion but I feel that opinions like that need backed up, and it wasnt. She see's Kian briefly at nursery and informed us that he is too tired to participate in her activities, after a physical activity. So I wonder what is being done about that? Nothing until we persist and pester, which you really do get tired of having to do. I say this as my opinion at the moment. Kian has developed with communication but I cant help feel that we are being let down by this service and that the therapist doesnt really know Kian. We do not have a regular date to see her which I requested at the meeting, to have. I will meet with her after easter. I am planning to film Kian as much as possible to show what Kian is able to do. I hope this will help in some way. I really want to have a positive opinion about this service, but I dont at this time. I may be seen as an awkward parent for asking for help. The majority of professionals have not come across whs, does this make Kian any less important than children with more well known conditions/syndromes. All our children deserve the best possible service available and more.
The nursery are going to create some pictures for home and private nursery to use for recognition. I see this as a positive approach.
Kian's statement will be begun in September, which will determine what help he does need and where his needs would be best met!
Wednesday, 17 February 2010
Half term appointments
Dental Hospital
We had an appointment at the dental hospital for Kian because of his gums being indented above his front teeth. Craig had been the first to notice this, so we got it checked out with the special needs dentist. He decided to get a second opinion, though his opinion was it was fine but there is an operation to correct it. It was our first time at the dental hospital, and it has been the only place where I have saw a sign that said " if you wait 20 mins let the receptionist know". Well we didnt have to wait long. Kian has had a cold and been not himself at all so we werent sure how the appointment would go. He was quite good for the dentist. The dentist said his teeth look fine, though his top ones look like they may cross over. This can be reviewed later on and helped if needed. I do remember another parent tell me that they had their childs teeth corrected, but after the brace the teeth went to how they had been previously. Not sure if this is to do with some children not getting their second teeth. Kian just has to wait for his bottom back two teeth to come in. He is teething terribly at the moment and drooling constantly. The dentist said she didnt think we would get a good x-ray for above his top front teeth, but it will be monitored and she did not think it would cause him any problems at the present. She mentioned that our local dentist had noticed a small piece of skin attached to Kian's palate, and there was possibly a bit of bone missing. I questioned this more and she said she definitely didnt think this was a problem or would have any baring on speech. We will see our local dentist every 6 months and see how things go.
Paediatrician appointment
We see our paediatrician roughly every 4 months. She is a lovely doctor. She noticed a big difference in how mobile Kian was and he was giving her some nice eye contact. He is now 12kg and 88 cm long. She suggested speaking to the physio about a walker. I feel that it may be the time to try a specialised walker but we shall see what our physio says. She comes next week. In the meantime we have been letting Kian use the baby walker, though alot of professionals class this as a big no no. I spoke of how I feel I need to understand about speech and communication more. Speech is the service we have that does not feel gelled. The other services keep you involved and enthusiastic. I dont feel we get that from the speech service. They have recently held a workshop about their service and how to engage with parents. Hopefully this is a step forward. We discussed Kian's behaviour as he is a little flighty with his hand at the moment, usually with me getting a smack of him on my face. Hopefully this is a phase that will pass. Kian does understand "no", but at times will laugh when told this. This is a concern of mine, but we will be persistant and direct and hopefully this will pass. Our doctor is going to write to the ent consultant about what the dentist said about Kian's palate, and ask him to have another look at it. She said it is only a thought but with Kian not sleeping great during the night and coughing, could it be that his liquid supper is lying where is shouldnt. We will go back in another 4 months, but will be having a multi disciplinary meeting soon where all the professionals meet with us to discuss Kian.
One thing the doctor asked was whether I have any friends at the mainstream private nursery Kian goes to. He only goes one day and I am generally in and out. But I did go to baby group with a mother who had two children go to the same nursery. Contact has eventually decreased to nothing, though if we saw each other in the street we would definitely chat. One clear thing I remember is when I told this mother that Kian was going to this nursery, she replied that she didnt realise that the nursery took children like Kian. That is something I will remember though honestly I know she thought nothing of that comment. Alot of people need educating. Sometimes you feel like you have not the energy to be the person to do it. There has been a few times it has crossed my mind to take Kian out of the mainstream nursery. I am so pleased I havent. It has been a massive part of Kians development, no matter how slow. Kian's dieticians child goes to the same nursery and has been in the same class at times. She told me that her daughter said to her once, Kian doesnt talk and he has really small feet. She wasnt sure of how much her child would know about Kian. Children are so honest, I found that comment, sad but funny at the same time. It is a sad thing that Kian has this condition, and the live that we have to lead through it. It is extremely hard and draining, but I never ever think that Im unlucky to have Kian. I believe people should appreciate what they have as you never know what is round the corner or what could have been, but we are lucky to have Kian, he is a sweetheart!
We had an appointment at the dental hospital for Kian because of his gums being indented above his front teeth. Craig had been the first to notice this, so we got it checked out with the special needs dentist. He decided to get a second opinion, though his opinion was it was fine but there is an operation to correct it. It was our first time at the dental hospital, and it has been the only place where I have saw a sign that said " if you wait 20 mins let the receptionist know". Well we didnt have to wait long. Kian has had a cold and been not himself at all so we werent sure how the appointment would go. He was quite good for the dentist. The dentist said his teeth look fine, though his top ones look like they may cross over. This can be reviewed later on and helped if needed. I do remember another parent tell me that they had their childs teeth corrected, but after the brace the teeth went to how they had been previously. Not sure if this is to do with some children not getting their second teeth. Kian just has to wait for his bottom back two teeth to come in. He is teething terribly at the moment and drooling constantly. The dentist said she didnt think we would get a good x-ray for above his top front teeth, but it will be monitored and she did not think it would cause him any problems at the present. She mentioned that our local dentist had noticed a small piece of skin attached to Kian's palate, and there was possibly a bit of bone missing. I questioned this more and she said she definitely didnt think this was a problem or would have any baring on speech. We will see our local dentist every 6 months and see how things go.
Paediatrician appointment
We see our paediatrician roughly every 4 months. She is a lovely doctor. She noticed a big difference in how mobile Kian was and he was giving her some nice eye contact. He is now 12kg and 88 cm long. She suggested speaking to the physio about a walker. I feel that it may be the time to try a specialised walker but we shall see what our physio says. She comes next week. In the meantime we have been letting Kian use the baby walker, though alot of professionals class this as a big no no. I spoke of how I feel I need to understand about speech and communication more. Speech is the service we have that does not feel gelled. The other services keep you involved and enthusiastic. I dont feel we get that from the speech service. They have recently held a workshop about their service and how to engage with parents. Hopefully this is a step forward. We discussed Kian's behaviour as he is a little flighty with his hand at the moment, usually with me getting a smack of him on my face. Hopefully this is a phase that will pass. Kian does understand "no", but at times will laugh when told this. This is a concern of mine, but we will be persistant and direct and hopefully this will pass. Our doctor is going to write to the ent consultant about what the dentist said about Kian's palate, and ask him to have another look at it. She said it is only a thought but with Kian not sleeping great during the night and coughing, could it be that his liquid supper is lying where is shouldnt. We will go back in another 4 months, but will be having a multi disciplinary meeting soon where all the professionals meet with us to discuss Kian.
One thing the doctor asked was whether I have any friends at the mainstream private nursery Kian goes to. He only goes one day and I am generally in and out. But I did go to baby group with a mother who had two children go to the same nursery. Contact has eventually decreased to nothing, though if we saw each other in the street we would definitely chat. One clear thing I remember is when I told this mother that Kian was going to this nursery, she replied that she didnt realise that the nursery took children like Kian. That is something I will remember though honestly I know she thought nothing of that comment. Alot of people need educating. Sometimes you feel like you have not the energy to be the person to do it. There has been a few times it has crossed my mind to take Kian out of the mainstream nursery. I am so pleased I havent. It has been a massive part of Kians development, no matter how slow. Kian's dieticians child goes to the same nursery and has been in the same class at times. She told me that her daughter said to her once, Kian doesnt talk and he has really small feet. She wasnt sure of how much her child would know about Kian. Children are so honest, I found that comment, sad but funny at the same time. It is a sad thing that Kian has this condition, and the live that we have to lead through it. It is extremely hard and draining, but I never ever think that Im unlucky to have Kian. I believe people should appreciate what they have as you never know what is round the corner or what could have been, but we are lucky to have Kian, he is a sweetheart!
Wednesday, 10 February 2010
Feb 10
Kian's physio's have just left our home. We had a meeting with his main physio, his TI and a physio from his special nursery. Kian was supposed to be at nursery today but he is a little unwell. It seems to be a bit of a cold but he is getting a little hot too. I have kept him off nursery to be on the safe side. The meeting was to discuss how things are and if we were happy with what service we are getting. At the beginning of our therapy journey I was not happy, but since we had our new physio, who we have had for almost 2 years things have greatly improved. She speaks to you with feeling and a caring attitude. Our first physio made us feel like Kian wasnt worth the bother. It is awful how many professionals, parents come across like that. The physio TI would come out every two weeks but we have now stopped that, and the main physio will come out to the home once a month. It has felt time to move on slightly.
We are waiting for Kian to be assessed for lycra. After seeing some fellow whs children using theratogs, braces etc I asked our physio about such for Kian. At the moment she feels that Kian is too good for lycra, which is what was suggested our local service supply in their budget. She feels that Kian is close to stepping, that it is not totally balance that is stopping him but confidence. I have a lot of respect for the opinion, but Im not sure. I am of the opinion that if there is something possible to help Kian then we should try it. We are going to try neoprene swim trunks to see if that makes a difference as they are meant to be similar.
Nursery is going well, I am looking to finding out about statements which guarentees your children accesses what they need. Kian's nursery is an assessment nursery so he accesses all the different therapies but his statement will be begun next year.
We think the hearing aids may be helping. Kian will sign baby and say, ah which has been progress. If he is eating and someone has said "what a mess", it has sounded like he has tried to copy. This has given me hope that Kian might one day say a word. Our genetic doctor told us that Kian will never speak sentences like you and I, but words are very possible. Let's hope. At his monday nursery, his keyworker has told us Kian does not sign as much but is making more sounds. I still do not like putting the hearing aids in, but I am hoping it will get easier. He wears them all day unless he is sleeping. We have a hearing test in two weeks. When we were at ENT, the doctor removed one of his grommets that were on their way out. The other is still in. He hopes because Kian's adnoids were removed that he may not need grommets again. We now go to a monthly group which is for children with hearing impairments. There is beautiful little girl who is profoundly deaf, she signs lots and is very clever. Then there is an almost ready to walk 9 month year old who has her little pink hearing aids. All the children were fantastic and their parents were great. I felt very comfortable meeting them all and I think it helped that the group are ran by the hearing impairment team. They have been one of the nicest teams I have come across.
I have become a member of the Steering group in our area. They aim to arrange 2 conferences a year for parents like myself to hear from professional, organisations and other parents. There is also alot of other work being done in our area to improve the lives of children and families with disabilities. I have become involved as there is so much that we have not been happy with as a family with a disabled child, but also we have felt let down by the services at times that I want to be involved to help make a difference for the future!
We are waiting for Kian to be assessed for lycra. After seeing some fellow whs children using theratogs, braces etc I asked our physio about such for Kian. At the moment she feels that Kian is too good for lycra, which is what was suggested our local service supply in their budget. She feels that Kian is close to stepping, that it is not totally balance that is stopping him but confidence. I have a lot of respect for the opinion, but Im not sure. I am of the opinion that if there is something possible to help Kian then we should try it. We are going to try neoprene swim trunks to see if that makes a difference as they are meant to be similar.
Nursery is going well, I am looking to finding out about statements which guarentees your children accesses what they need. Kian's nursery is an assessment nursery so he accesses all the different therapies but his statement will be begun next year.
We think the hearing aids may be helping. Kian will sign baby and say, ah which has been progress. If he is eating and someone has said "what a mess", it has sounded like he has tried to copy. This has given me hope that Kian might one day say a word. Our genetic doctor told us that Kian will never speak sentences like you and I, but words are very possible. Let's hope. At his monday nursery, his keyworker has told us Kian does not sign as much but is making more sounds. I still do not like putting the hearing aids in, but I am hoping it will get easier. He wears them all day unless he is sleeping. We have a hearing test in two weeks. When we were at ENT, the doctor removed one of his grommets that were on their way out. The other is still in. He hopes because Kian's adnoids were removed that he may not need grommets again. We now go to a monthly group which is for children with hearing impairments. There is beautiful little girl who is profoundly deaf, she signs lots and is very clever. Then there is an almost ready to walk 9 month year old who has her little pink hearing aids. All the children were fantastic and their parents were great. I felt very comfortable meeting them all and I think it helped that the group are ran by the hearing impairment team. They have been one of the nicest teams I have come across.
I have become a member of the Steering group in our area. They aim to arrange 2 conferences a year for parents like myself to hear from professional, organisations and other parents. There is also alot of other work being done in our area to improve the lives of children and families with disabilities. I have become involved as there is so much that we have not been happy with as a family with a disabled child, but also we have felt let down by the services at times that I want to be involved to help make a difference for the future!
Saturday, 16 January 2010
What's been happening?
Starting with Kian's hearing, we were giving the hearing aids and I was shown how to insert them into Kian's ears. I did not like doing it as I did not feel comfortable and confident enough. The teacher of the deaf came out to our home and gave myself and Craig some advice and some items that would be useful with the aids. A device where we can test the aid so we have an idea what it is like how Kian is hearing with the aid, some batteries and an object to dry the aid when washed.
In the last 2 months, Kian has had an ear infection, then a viral, then cold so it has been hard to get going with the hearing aids properly. Craig is quite confident inserting them, and once in, Kian doesn't mind them. I am going in to Kian's special nursery next week where I will meet with the teacher of the deaf and nursery staff so the hearing aids can be tried whilst in nursery. I felt that I would like the opinion of the staff who are familiar with children using the aids and whether they think they are making a difference to Kian's hearing, and we will continue to try at home. We go to ENT at the beginning of Feb to assess it, but we know that Kian's grommets are on their way out of his ears. I feel that they will want to put more in, but we will find out more at his appointment.
Kian has proved that he can crawl, though he did it briefly and has decided not to carry on doing it. When he crawled we think he did not think the process of it but just did it. He has chosen the method of bum shuffling to get himself around. We are really pleased that he has determination to get from one place to another by which ever means, be that bum shuffling, but we know how important the crawling is for his co-ordination. We have no equipment from physio to aid standing or walking but I am starting to feel that we may need something else to help. This isnt bacause Im in a massive rush for Kian to do certain things, you soon get in your head that you can never be in a rush for milestones with a disabled child, but I feel that a little bit of help might help him enjoy more things in his life. Not sure if that will make sense to people! Will speak to physio next week, though the opinion has been to let Kian learn the things independently.
Kian continues to enjoy his signing with songs and words. We are no longer attending the session that Kian has attended for the last two years as we felt it was time to move on. The group and the leader will be a massive miss, but we will continue to use it through out of daily life, and the signs are used at nursery.
We have heard about pecs which we thought might be an idea to use with Kian. This involves using pictures to recognise things and routine. Kian's ST thought the time was not right for Kian to try this but said she would think about it. There is never enough time in the day to do even most of what you would like to achieve. We don't overload Kian with activities and exercises, but try to involve it all in "normal life".
We missed Kian's eye appointment in dec with him being poorly. His eyesight has been said is fine. I would like to ask though about visual perception when we have the appointment. This appointment will be through our primary care trust. Visual perception has not been mentioned at previous appointments but after attending a workshop on this subject I would like to know more and if there is something that could help Kian. If we dont get a great response from this appointment, we will travel to scotland where we will see a man who specialises in this. It was unbelievable to see what this man demonstrated through the use of tinted glasses. One example was a sufferer of parkinson disease. This lady was shaking terribly, the glasses were placed on her and the shaking decreased dramatically. Could this of been something that would of helped my dad who died two years ago and suffered of PD. Now though I am of the opinion through seeing examples of children with disablities, could this be something that could help Kian? We have to explore this avenue to know either way.
Kian has been 3 months without a seizure which is good news but in our hearts we know he is going to have more. We have just received an epilepsy monitor through the Muir Maxwell Trust. This will be placed under his mattress in his cot and will hopefully notify us if he has a seizure by an alarm. We have bought a camera monitor that isnt very good to be honest, so fingers crossed for this monitor. It arrived this week so will get it set up to try.
Kian has a dummy/soother. For the last few months he has been able to pick it up and put in his mouth. Not a great deal to some people but I love that he can do it. It takes his core stability to balance and reach, then his fine motor skills to pick it up and get it to his mouth, and he has the determination to do it. Im very proud of that little milestone.
I dont think we take much for granted. Kian can manage drinking out of one kind of cup by himself. Each time I hand him that cup, I think how lucky we are that he can manage it. It was a great possiblity that he wouldnt. It is one of the little things he can manage by himself. There are so many children out there who need help with everything. I do not take that for granted.
Our year is already filling up with special occasions and appointments. Kian has such determination and personality and I hope that this is going to be a really good year for us!
In the last 2 months, Kian has had an ear infection, then a viral, then cold so it has been hard to get going with the hearing aids properly. Craig is quite confident inserting them, and once in, Kian doesn't mind them. I am going in to Kian's special nursery next week where I will meet with the teacher of the deaf and nursery staff so the hearing aids can be tried whilst in nursery. I felt that I would like the opinion of the staff who are familiar with children using the aids and whether they think they are making a difference to Kian's hearing, and we will continue to try at home. We go to ENT at the beginning of Feb to assess it, but we know that Kian's grommets are on their way out of his ears. I feel that they will want to put more in, but we will find out more at his appointment.
Kian has proved that he can crawl, though he did it briefly and has decided not to carry on doing it. When he crawled we think he did not think the process of it but just did it. He has chosen the method of bum shuffling to get himself around. We are really pleased that he has determination to get from one place to another by which ever means, be that bum shuffling, but we know how important the crawling is for his co-ordination. We have no equipment from physio to aid standing or walking but I am starting to feel that we may need something else to help. This isnt bacause Im in a massive rush for Kian to do certain things, you soon get in your head that you can never be in a rush for milestones with a disabled child, but I feel that a little bit of help might help him enjoy more things in his life. Not sure if that will make sense to people! Will speak to physio next week, though the opinion has been to let Kian learn the things independently.
Kian continues to enjoy his signing with songs and words. We are no longer attending the session that Kian has attended for the last two years as we felt it was time to move on. The group and the leader will be a massive miss, but we will continue to use it through out of daily life, and the signs are used at nursery.
We have heard about pecs which we thought might be an idea to use with Kian. This involves using pictures to recognise things and routine. Kian's ST thought the time was not right for Kian to try this but said she would think about it. There is never enough time in the day to do even most of what you would like to achieve. We don't overload Kian with activities and exercises, but try to involve it all in "normal life".
We missed Kian's eye appointment in dec with him being poorly. His eyesight has been said is fine. I would like to ask though about visual perception when we have the appointment. This appointment will be through our primary care trust. Visual perception has not been mentioned at previous appointments but after attending a workshop on this subject I would like to know more and if there is something that could help Kian. If we dont get a great response from this appointment, we will travel to scotland where we will see a man who specialises in this. It was unbelievable to see what this man demonstrated through the use of tinted glasses. One example was a sufferer of parkinson disease. This lady was shaking terribly, the glasses were placed on her and the shaking decreased dramatically. Could this of been something that would of helped my dad who died two years ago and suffered of PD. Now though I am of the opinion through seeing examples of children with disablities, could this be something that could help Kian? We have to explore this avenue to know either way.
Kian has been 3 months without a seizure which is good news but in our hearts we know he is going to have more. We have just received an epilepsy monitor through the Muir Maxwell Trust. This will be placed under his mattress in his cot and will hopefully notify us if he has a seizure by an alarm. We have bought a camera monitor that isnt very good to be honest, so fingers crossed for this monitor. It arrived this week so will get it set up to try.
Kian has a dummy/soother. For the last few months he has been able to pick it up and put in his mouth. Not a great deal to some people but I love that he can do it. It takes his core stability to balance and reach, then his fine motor skills to pick it up and get it to his mouth, and he has the determination to do it. Im very proud of that little milestone.
I dont think we take much for granted. Kian can manage drinking out of one kind of cup by himself. Each time I hand him that cup, I think how lucky we are that he can manage it. It was a great possiblity that he wouldnt. It is one of the little things he can manage by himself. There are so many children out there who need help with everything. I do not take that for granted.
Our year is already filling up with special occasions and appointments. Kian has such determination and personality and I hope that this is going to be a really good year for us!
Monday, 2 November 2009
ENT update
Just back from ENT appointment. Kian was really good with the Dr looking in his ear and was even having a giggle at it. The hearing test did not go great. Kian seemed to me more interested in the toys that they were using to distract him. They definitely worked in distracting him but he wasnt concentrating on the sounds.
We saw the consultant who is lovely and two teachers of the deaf. They have met Kian before. They agree that Kian does definitely hear but it is hard to determine how much he hears or how he hears. The testing has not shown great results in the hearing.
On the last appointment hearing aids were discussed but we agreed to see how things went. I believe Kian is selective in his hearing but if hearing aids will help, as much as I would rather he didnt need them, then we have to try them. The team have advised us to try them at the beginning for an hour per day and see how they work for Kian. Sometimes Kian will not focus on a person for longer than a couple of moments so it may help his attention if hears more.
Impressions have been taken of his ears. The ears were checked first, then a small spongue inserted and positioned in the ear, then a mould was placed just in the ear. Kian was so good having this done to both ears. We will be called when they are ready. We will go in and the hearing aids will be initially tried with Kian and we will be shown exactly what to do with them. Time will tell hopefully with them!
We saw the consultant who is lovely and two teachers of the deaf. They have met Kian before. They agree that Kian does definitely hear but it is hard to determine how much he hears or how he hears. The testing has not shown great results in the hearing.
On the last appointment hearing aids were discussed but we agreed to see how things went. I believe Kian is selective in his hearing but if hearing aids will help, as much as I would rather he didnt need them, then we have to try them. The team have advised us to try them at the beginning for an hour per day and see how they work for Kian. Sometimes Kian will not focus on a person for longer than a couple of moments so it may help his attention if hears more.
Impressions have been taken of his ears. The ears were checked first, then a small spongue inserted and positioned in the ear, then a mould was placed just in the ear. Kian was so good having this done to both ears. We will be called when they are ready. We will go in and the hearing aids will be initially tried with Kian and we will be shown exactly what to do with them. Time will tell hopefully with them!
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