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!