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!

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!