Bringing us upto date!

We are not far off being two years down the line from when Kian was diagnosed. The previous blogs have been really our history with it all. This blog will be about the last few months, then hopefully we will be upto date with news!

Kian was measured for his second pair of piedro boots in early july. We attend a special needs school where he has his orthhotics appointment. The first pair have been really helpful to him with his standing. We do alot of standing without the shoes also as hopefully he wont have to depend on the shoes forever to give him the correct support.

We have had input from a dietician since march,08. Another whs mum had mentioned being involved with a dietician and I had not even thought of it even though Kian's weight was very slow. I spoke to our then paediatrician who said we knew Kian was going to have slow weight as that is a symptom of whs. If he had downs syndrome we would be able to follow a downs syndrome chart, but there was not one for whs. Eventually with a little nagging we were referred to Kian's dietician. I believe one of the good ones. On the first appointment she told us that even though there would be slow weight gain with whs, we should still maximise Kian's calories. So we started with all the extra cheese, butter, milk etc in food. We then went on to give him a paediasure drink with his breakfast. This did show results. Kian is now on two cartons of paediasure plus a day. One with breakfast and one with supper. He loves a variety of food, so he has fattening food, but also lots of veg and fruit. Our last visit showed Kian was on the 2nd centile line of the "normal" weight chart, weighing 23lbs. We, including the dietician were over the moon. He is 85cm in length. I did give our dietician the link to the whs growth chart that we have found out from other whs parents. These parents have been such a great source of information and give lots of support. The link for growth for whs is http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2413080
We go back to the dietician at the end of sep.

When Kian had grommets inserted it was believed that his hearing tests would improve. This has not been the case. We have been involved with a teacher of the deaf. We know that Kian does hear, but what or how he hears we do not know. He is going to be monitored at nursery over the next term. At home we think that his hearing is fine, so hopefully when at nursery they will also agree with this. If this is not the case then hearing aids will be tried. Initially I don't think Kian will like them one bit. In my mind I am thinking that possibly his hearing is delayed like everything else. The hearing impaired team have been fantastic and have offered support in other areas which has been great.

At our last paediatrician appointment the doctor was really pleased with how Kian is doing. He is on a lower dose of sodium valporate for his seizures, this being because he has put on weight and as far as we are aware, he has had no more seizures since march. They looked to whether to up his medicine, but we are to wait until he puts on another 2 kilo or if he has any more seizures. I do not like the sound of waiting for him to have more seizures but I obviously do not want it to be a higher dose if it is not nessicary. We spoke of how at the whs meeting it was recommended to have the kidneys checked yearly. The doctor will write to our genetic doctor for advice on that. We spoke of Kian not sleeping too well, and it has been suggested to have an oxygen test done whilst he is sleeping. We are going to see how things go.

We went to see our genetic doctor last week. Kian was asleep till the end, typical. Craig wanted to show off his signs. He has suggested urine samples for the kidney check annually until Kian is 5. We have heard people speak of micro deletions, he told us that we can find out the size of the deletion and the complete breakdown, but it would not determine what Kian will or will not be able to achieve. We said we will leave that for now, but possibly in the future find out more. We also asked whether a brain scan would be helpful. He said it would be interested to see what it would look like from a research point of view, but it would not tell us anything more for Kian. We also spoke of possible future children, how we felt about it and also what our options would be for us to feel as much informed if we do decide to have more children. We will go back again in 6 months.

Kian has went to a private mainstream nursery since last oct. He started by doing 2 half days and recently it has changed to one full day a week. He started in the second baby room where the children were a little younger than him but were more developed. We wanted Kian to see what children can do to be motivated. He moved into the next room in Jan, which was a good changed for Kian. He gets great enjoyment from other children. In this room the children were more active, they played more with gloop etc. This was the room where the therapists began showing the exercises. The nursery have been very good, and Kian has a great relationship with his key worker. She tries very hard with Kian but it comes so natural with her. Kian was awarded funding which would give him one to one support. This would be extremely helpful when Kian moved to his next room "the penguins", in june. His key worker agreed to work in the next room on the times that Kian was in there. With the nursery working alongside what we do at home has been great. We have had 3 multi-disciplinary meetings there, where all the professionals involved and myself and Craig discuss Kian and what happens next for him.
We have chose for Kian to access a special needs nursery from sep. He will do 3 mornings for 2 1/2 hours. He could go in for 5 mornings. This is from the age of 2 1/1. We did want to keep the mainstream involvement for as long as we can. We are not nieve about Kian's needs but hopefully at this age it is not an issue of inclusion. Kian has the support which means he and his peers are safe and he has the mainstream experience. At the special needs nursery he will do music and movement on one day, rebound on another, and then swimming on the last. Hopefully this will bring great benefits. This nursery will also assess Kian's needs and who and where they can be best met. It will be an exciting time come september!

Finally, we are hopefully going to be part of a behaviour study in people with whs. Though Kian is still quite young, if sharing our experiences help, then great. There was talk at the conference in May of autism. Hopefully more research will go into whs which will help us find out more, but we are keeping an open mind about autism. Kian is very loving, but there have been a few characteristics that have made me wonder. Some people say, all special needs people will have some autistic traits. Some people say that ALL people have some autistic traits. ???