A July Update

Kian is quite well at the moment. Sometimes I feel like I am just waiting for him to catch another cold, or have another seizure. But from the last bout of seizures I knew I was going to make the most of when Kian is healthy. As Kian is getting older there is definitely less colds and illnesses, and the seizures you come to live with. Epilepsy though is unpredictable and you cant take it for granted. Some people are unaware of epilepsy but it is all around us. Some people manage with it, some are ashamed of it and some of scared of it.

This week has been a mixture of news for whs children. As I log onto facebook to catch up with what has been happening with other families, there is one little girl quite poorly in hospital, another little girl taking steps with her walker, and then another little boy leaving hospital after quite an ordeal. I feel with the connection of these families that we all share the joy of hitting milestones, and defying the Drs odds, but we also feel the pain and sadness of when one of our children are poorly. I am so grateful for the support network of other whs families, it is a massive lifeline in my life.

Alot is going on at home with finding out from services what we need for Kian that can make life easier. At this time things are going pretty straight forward. I hope it lasts.

Kian is looking steadier on his feet when he does his supported walking. I had imagined that Kian would need to be able to stand static without support before being able to walk, but our physio has said she has lots of patients who cant stand but manage to walk. That is encouraging about Kian. Kian is so wobbly that I cant imagine him standing independently for a long time. But we are going to keep walking him about the house and to and from the car.

Our OT have give us some nice new exercises to try which will be great fun and interesting, and em messy I think.

Kian has a dummy which is mainly for during the night. Im not sure whether I should be withdrawing it from him because of his teeth. His teeth do not look fantastic and there is a history connected with whs that has made me expect it. His dummy is something that he can get himself and use if he wants to. It is one of the little choices Kian can make for himself and it also does comfort him. Im not sure on this one???

Kian breaks up from nursery for the summer holidays next week, I cant wait!