A bit of a stressfull week!

Well I knew it was round the corner, Kian has a seizure on monday. He had been a little off over the weekend, but he seemed ok on monday so I took him to nursery as he really does love it. I said he had been a little off and to ring me if he didnt seem himself. They called me at lunch time and I brought him home. I put his favourite In the night garden programme on and I went into the kitchen to get him a dose of neurofen as he had already had calpol at nursery. When I came back through he was bent over in his chair fitting. I could have been classed as an absence seizure and his body was making no movement, but it went on for roughly 3 mins. I had his dose of midazolam ready but I was so pleased that he came out of it himself before the 5 mins. This has been the first time this has happened and Im hoping it to be a good thing. I had called the doctors before his fit to try and get an appointment to get him checked over but I was told to call back in the morning. After the fit I called again to get him checked out. We got an appointment and the doctor informed us Kian had an ear infection. It can all be a vicious circle as he doesnt seem to be moving his bowels which isnt normal for Kian. He has been given antibiotics and is seeming better already. We agreed with our consultant that we would contact her if Kian had two seizures, then she would up his meds. Luckly he did only have the one so we will see how things go. Count down begins again for the seizures!

Yesterday I attended a session on advacy for parents. It was really good and I did come away with some useful tips and advice. In this kind of environment parents and carers have had some terrible experiences and really want to off load them. Will it always be parents v professionals? I hope not but there are good professionals out there but you can also come across some not so good, maybe the job has worn them down, Im not sure.

I do have an issue still about Kian's speech therapy. Most people who know me are aware that when I get a bit between my teeth it is very hard for me to let go. This only developed in me once I had my child. I am not perfect, but I want and try for what is best for him. Maybe I will get it wrong sometimes, Im only human. But my little boy is under estimated at times. A solution to our problem would be for Kian to have a one to one session of speech therapy at nursery at least once per week for that person to get to know Kian and for him to be comfortable to engage with that person. I really dont think that is an unreasonable request. We shall see what happens as I have voiced my concerns. Kian is only 3, but communication is something that can be worked on.

A great surprise this week was finding out there is another family in our area with a child with whs. Their child is 4 months old and is a gorgeous little fella. They actually have the same consultant who we had at diagnosis. He told them he used to have a patient with WHS. Because of what they had been told of the condition and because he did not say anymore of us, they did think that the patient had died. Luckly we share a dietician who liased between us to see if we wanted to get in touch. The dietician couldnt believe it, she said, to never have a child with whs, and now she has two in her caseload is unbelievable. I wont go into this families details as it is their story to tell if they want, but to hear certain things that they were told about the syndrome is awful. It crossed my mind, how would I have felt or reacted to be told certain things before Kian was born or when he was just born. In a way, I cant believe Kian wasnt diagnose till 10 months. A parent has asked me before if I really didnt know anything. A relative today said she remembers me thinking there was a problem, but lots of people said that because Kian was small, it would just take time for him to catch up.
It is sad for another child to have the syndrome as it does bring difficulties but I hope that we can help and support this family in any way possible. But though I know that there are some really tough times, and at times you dont know why you have been chosen for you and your child to follow this different kind of life, having a disabled child isnt the end of the world. Sometimes you have no control over what happens but you can only try to do your best like any parent.