What has been happening?

At the end of september we went to see the dietician. These appointments always seem to go well. I think the main reason being is that the dietician has never disregarded Kian's weight issues because he has WHS. When Kian was weighed, he was 24lb 8. The dietician was very pleased as was I. The dietician decided to keep Kian on the paediasure supplements, but have one a day with extra fibre. Kian seems to have loads of fibre in his diet but his last seizures seemed to be connected to constipation and straining. Kian has not yet started these feeds as there was issues with the GP surgery adjusting his perscription. Hopefully we will see a difference when they start.

Kian had been 6 months without having a seizure. I was at work and my brother called, who was babysitting, to say that Kian had a fit and he had gave him midazlom to help bring him out of it. He had been straining before falling asleep then fitted after waking up. He then had another seizure the next morning, again straining. The more recent fits had fell in a pattern of Kian having 2 in 24 hours. 9 hours after the 2nd fit Kian had another one. There was no straining but this one seemed more intense. We took him to hospital to get checked out as it did feel a worry. The doctor said it was possibly a viral infection and to keep him hydrated and on calpol paracetamol. Kian was struggling to drink so we used his medication syringues to keep giving him drinks of water. This was over a month ago, he is fine within himself now but has a cough that seems to have lingered. We spoke to Kian's consultant and she upped his anit-epileptic meds, and perscribed lactalose to help him not be constipated.

Nursery seems to be going ok. Kian goes to nursery tues-thurs on the transport with other children. He does like that. I am pleased that he is doing rebound, music & movement, and swimming, but I do not have a strong enough opinion on the school yet. There is not alot of choice of schools for children with difficulties, this is what I feel anyway. I would like to hope that every person working with children with difficulties or any children in fact have the childs best interests at heart. But that is not always going to be the case.

Physio & OT have worked really well with home and nursery. We have home input, input into the private nursery and then in his special nursery. Speech and Language Therapy seems to be a problem. We ceased working with the last ST because of lack of understanding to what we were asking as parents. I have been in touch with the lead professional of the department which I have not at this time found to be of any help. I was told that when Kian would go into nursery his therapist would transfer to a school based one but we would still have input at home. We had the visit in the summer for the new ST to meet Kian. She said she would assess him at nursery and determine targets for nursery and home. I have asked for these recently and I have now been sent a copy of Kian's SALT targets through the post. I think targets should be discussed and though I understand some things I am not a therapist and I expect a more involved role. One of the targets is something that Kian is achieving so I am wondering exactly about how these targets were reached. I am waiting to hear back as I have asked to discuss them. I have also tried to find out exactly how much therapy Kian is entitled to. It seems to be a very grey area with the department and I dont think our feelings as a family have been taking into consideration. There is an organisation called PALS who can help with any issue that deals with health. I will see what I hear back and if it not satisfactory I think I will have to speak to PALS. They will liase with professionals for you and if there is not enough funding they can apply for more funding to help get what is needed. It is worth a try.

This week we went to see Kian's consultant. She answered alot of questions and will find out others. For example, is Kian a child that should require the flu vaccine or the swine flu vaccine. We are going to carry on without the flu vaccine and she will find out about the swine flu. One of the issues we have had is our health visitor leaving who was also our key worker. I dont think we have had someone yet who has acted as a key worker really. Our consultant has said that if we need something to find out or someone to turn to, she will be the person to do it. Gosh, someone offering to help a little more than what is expected within their job role. These people are hard to come by. The Dr got down on the floor and played with Kian whilst he was shredding the roll that they have in Dr's rooms. As we left the Dr give me a hug, couldnt believe this is our doctor.

We go to the ENT department on monday. We met a lady at the nursery who came to assess Kian. She did get some responses on the hearing test but she thought that it seemed to be that Kian takes a moment or two before he responds to things which I have noticed. This could be the reason why there is doubts on the hearing. If this is the case then hearing aids wont be needed. I dont want Kian to have them if he does not really need them. Will update after monday.

At home Kian is continuing with his swimming lessons. He loves being in the water and can hold himself upright when he has his armbands on.
He is doing really well puting food to his mouth. Though he is also trying to put tissues and play doh in his mouth too. He tries to put his tommee tippee cup to his mouth but does not get much from it. He likes to drink out of the dodi cup, though we hold it for him.
He is now cruising along the furniture. He loves to be on his feet. He still is not crawling, but he gets himself around.
One of the big things for myself is that I have given up work. This was a difficult decision, I worked with such lovely people. It was so strange that I went to a new place of work 2 years ago, which was a special needs school. Then Kian was diagnosed a month later. It had got to the point that life was getting very very busy. Kian would not sleep through the night, then he would be up and ready for nursery. I would do some pottering around the house, then Kian would be back, have his lunch, have a sleep. Then an hour later I would go to work and when I came home Kian would be in bed. I want more time with Kian, there is so much to do with him and so much to enjoy. I did not want to be someone who did not have a job, but I felt that my job as mam to Kian has had to come first and there were no negotiations on that.