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/
Thursday, 18 March 2010
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!
Friday, 30 October 2009
What has been happening?
At the end of september we went to see the dietician. These appointments always seem to go well. I think the main reason being is that the dietician has never disregarded Kian's weight issues because he has WHS. When Kian was weighed, he was 24lb 8. The dietician was very pleased as was I. The dietician decided to keep Kian on the paediasure supplements, but have one a day with extra fibre. Kian seems to have loads of fibre in his diet but his last seizures seemed to be connected to constipation and straining. Kian has not yet started these feeds as there was issues with the GP surgery adjusting his perscription. Hopefully we will see a difference when they start.
Kian had been 6 months without having a seizure. I was at work and my brother called, who was babysitting, to say that Kian had a fit and he had gave him midazlom to help bring him out of it. He had been straining before falling asleep then fitted after waking up. He then had another seizure the next morning, again straining. The more recent fits had fell in a pattern of Kian having 2 in 24 hours. 9 hours after the 2nd fit Kian had another one. There was no straining but this one seemed more intense. We took him to hospital to get checked out as it did feel a worry. The doctor said it was possibly a viral infection and to keep him hydrated and on calpol paracetamol. Kian was struggling to drink so we used his medication syringues to keep giving him drinks of water. This was over a month ago, he is fine within himself now but has a cough that seems to have lingered. We spoke to Kian's consultant and she upped his anit-epileptic meds, and perscribed lactalose to help him not be constipated.
Nursery seems to be going ok. Kian goes to nursery tues-thurs on the transport with other children. He does like that. I am pleased that he is doing rebound, music & movement, and swimming, but I do not have a strong enough opinion on the school yet. There is not alot of choice of schools for children with difficulties, this is what I feel anyway. I would like to hope that every person working with children with difficulties or any children in fact have the childs best interests at heart. But that is not always going to be the case.
Physio & OT have worked really well with home and nursery. We have home input, input into the private nursery and then in his special nursery. Speech and Language Therapy seems to be a problem. We ceased working with the last ST because of lack of understanding to what we were asking as parents. I have been in touch with the lead professional of the department which I have not at this time found to be of any help. I was told that when Kian would go into nursery his therapist would transfer to a school based one but we would still have input at home. We had the visit in the summer for the new ST to meet Kian. She said she would assess him at nursery and determine targets for nursery and home. I have asked for these recently and I have now been sent a copy of Kian's SALT targets through the post. I think targets should be discussed and though I understand some things I am not a therapist and I expect a more involved role. One of the targets is something that Kian is achieving so I am wondering exactly about how these targets were reached. I am waiting to hear back as I have asked to discuss them. I have also tried to find out exactly how much therapy Kian is entitled to. It seems to be a very grey area with the department and I dont think our feelings as a family have been taking into consideration. There is an organisation called PALS who can help with any issue that deals with health. I will see what I hear back and if it not satisfactory I think I will have to speak to PALS. They will liase with professionals for you and if there is not enough funding they can apply for more funding to help get what is needed. It is worth a try.
This week we went to see Kian's consultant. She answered alot of questions and will find out others. For example, is Kian a child that should require the flu vaccine or the swine flu vaccine. We are going to carry on without the flu vaccine and she will find out about the swine flu. One of the issues we have had is our health visitor leaving who was also our key worker. I dont think we have had someone yet who has acted as a key worker really. Our consultant has said that if we need something to find out or someone to turn to, she will be the person to do it. Gosh, someone offering to help a little more than what is expected within their job role. These people are hard to come by. The Dr got down on the floor and played with Kian whilst he was shredding the roll that they have in Dr's rooms. As we left the Dr give me a hug, couldnt believe this is our doctor.
We go to the ENT department on monday. We met a lady at the nursery who came to assess Kian. She did get some responses on the hearing test but she thought that it seemed to be that Kian takes a moment or two before he responds to things which I have noticed. This could be the reason why there is doubts on the hearing. If this is the case then hearing aids wont be needed. I dont want Kian to have them if he does not really need them. Will update after monday.
At home Kian is continuing with his swimming lessons. He loves being in the water and can hold himself upright when he has his armbands on.
He is doing really well puting food to his mouth. Though he is also trying to put tissues and play doh in his mouth too. He tries to put his tommee tippee cup to his mouth but does not get much from it. He likes to drink out of the dodi cup, though we hold it for him.
He is now cruising along the furniture. He loves to be on his feet. He still is not crawling, but he gets himself around.
One of the big things for myself is that I have given up work. This was a difficult decision, I worked with such lovely people. It was so strange that I went to a new place of work 2 years ago, which was a special needs school. Then Kian was diagnosed a month later. It had got to the point that life was getting very very busy. Kian would not sleep through the night, then he would be up and ready for nursery. I would do some pottering around the house, then Kian would be back, have his lunch, have a sleep. Then an hour later I would go to work and when I came home Kian would be in bed. I want more time with Kian, there is so much to do with him and so much to enjoy. I did not want to be someone who did not have a job, but I felt that my job as mam to Kian has had to come first and there were no negotiations on that.
Kian had been 6 months without having a seizure. I was at work and my brother called, who was babysitting, to say that Kian had a fit and he had gave him midazlom to help bring him out of it. He had been straining before falling asleep then fitted after waking up. He then had another seizure the next morning, again straining. The more recent fits had fell in a pattern of Kian having 2 in 24 hours. 9 hours after the 2nd fit Kian had another one. There was no straining but this one seemed more intense. We took him to hospital to get checked out as it did feel a worry. The doctor said it was possibly a viral infection and to keep him hydrated and on calpol paracetamol. Kian was struggling to drink so we used his medication syringues to keep giving him drinks of water. This was over a month ago, he is fine within himself now but has a cough that seems to have lingered. We spoke to Kian's consultant and she upped his anit-epileptic meds, and perscribed lactalose to help him not be constipated.
Nursery seems to be going ok. Kian goes to nursery tues-thurs on the transport with other children. He does like that. I am pleased that he is doing rebound, music & movement, and swimming, but I do not have a strong enough opinion on the school yet. There is not alot of choice of schools for children with difficulties, this is what I feel anyway. I would like to hope that every person working with children with difficulties or any children in fact have the childs best interests at heart. But that is not always going to be the case.
Physio & OT have worked really well with home and nursery. We have home input, input into the private nursery and then in his special nursery. Speech and Language Therapy seems to be a problem. We ceased working with the last ST because of lack of understanding to what we were asking as parents. I have been in touch with the lead professional of the department which I have not at this time found to be of any help. I was told that when Kian would go into nursery his therapist would transfer to a school based one but we would still have input at home. We had the visit in the summer for the new ST to meet Kian. She said she would assess him at nursery and determine targets for nursery and home. I have asked for these recently and I have now been sent a copy of Kian's SALT targets through the post. I think targets should be discussed and though I understand some things I am not a therapist and I expect a more involved role. One of the targets is something that Kian is achieving so I am wondering exactly about how these targets were reached. I am waiting to hear back as I have asked to discuss them. I have also tried to find out exactly how much therapy Kian is entitled to. It seems to be a very grey area with the department and I dont think our feelings as a family have been taking into consideration. There is an organisation called PALS who can help with any issue that deals with health. I will see what I hear back and if it not satisfactory I think I will have to speak to PALS. They will liase with professionals for you and if there is not enough funding they can apply for more funding to help get what is needed. It is worth a try.
This week we went to see Kian's consultant. She answered alot of questions and will find out others. For example, is Kian a child that should require the flu vaccine or the swine flu vaccine. We are going to carry on without the flu vaccine and she will find out about the swine flu. One of the issues we have had is our health visitor leaving who was also our key worker. I dont think we have had someone yet who has acted as a key worker really. Our consultant has said that if we need something to find out or someone to turn to, she will be the person to do it. Gosh, someone offering to help a little more than what is expected within their job role. These people are hard to come by. The Dr got down on the floor and played with Kian whilst he was shredding the roll that they have in Dr's rooms. As we left the Dr give me a hug, couldnt believe this is our doctor.
We go to the ENT department on monday. We met a lady at the nursery who came to assess Kian. She did get some responses on the hearing test but she thought that it seemed to be that Kian takes a moment or two before he responds to things which I have noticed. This could be the reason why there is doubts on the hearing. If this is the case then hearing aids wont be needed. I dont want Kian to have them if he does not really need them. Will update after monday.
At home Kian is continuing with his swimming lessons. He loves being in the water and can hold himself upright when he has his armbands on.
He is doing really well puting food to his mouth. Though he is also trying to put tissues and play doh in his mouth too. He tries to put his tommee tippee cup to his mouth but does not get much from it. He likes to drink out of the dodi cup, though we hold it for him.
He is now cruising along the furniture. He loves to be on his feet. He still is not crawling, but he gets himself around.
One of the big things for myself is that I have given up work. This was a difficult decision, I worked with such lovely people. It was so strange that I went to a new place of work 2 years ago, which was a special needs school. Then Kian was diagnosed a month later. It had got to the point that life was getting very very busy. Kian would not sleep through the night, then he would be up and ready for nursery. I would do some pottering around the house, then Kian would be back, have his lunch, have a sleep. Then an hour later I would go to work and when I came home Kian would be in bed. I want more time with Kian, there is so much to do with him and so much to enjoy. I did not want to be someone who did not have a job, but I felt that my job as mam to Kian has had to come first and there were no negotiations on that.
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