Catch up!

It has felt quite a while since I last blogged.

Kian is really well at the moment.

Therapy is going steady at the moment for Kian. I have yet another meeting with Speech next week to try and gain some more time or even just some time for Kian with a ST. It is really frustrating and annoying.

Kian has a hearing test next week also then it is back to seeing where we are with the hearing aids

After new year we are having a stair lift fitted at home. People who know Kian to see will know he is not the average size for a child of his age but he is 3 foot and when carrying him up and down stairs on at least 3 occasions a day, it can get awkward. Also Kian does not help in the way of holding on safely, he will pull himself back in a position where you get used to carrying him safely but really isnt ideal.

The push for the stair lift was finding out I was pregnant with my second child. This child was planned and wanted. I found out pretty much straight away as I was getting ready for the great north run on sep 19th and was waiting for my period to come. Sorry for the personal information. I had also been at a meeting on the thursday where I kept having flushes and feeling weak. On leaving the meeting I went to my local morrisons where I bought a test. I thought I would safe embarressment by going to the self service till. Oh no, not to be, I scanned the test and the light started flashing and I had to wait for an assistant to come over to my till. This was typical of my luck. Anyway, finally bought test and went to supermarket toilet to do it and there were the two lines. Eeeeee! I went in the car and spoke to a friend, I had to have some time to gather myself before I went home where my brother was babysitting Kian. I went home and took the second test in the pack to be sure, there were the two lines again. I had been able to speak to Craig by then who most will know works away. I thought we may have been different this time and kept it to ourselves until we knew what was what, unlike when I was pregnant with Kian, we spread the news straight away. Well we ended up sharing the news to close family and friends. I was aware that there could be mixed opinions. For instance would we cope when we have a disabled child to look after, what if this child was disabled too!

We had discussed future pregnancies with genetics and they had said there was no reason for us to not to go on to have a healthy child and to get intouch if I did become pregnant. I think everyone seemed quite pleased with the news, though I wouldnt have been shocked to hear people question our decision. The argument on our side had always been, why shouldnt Kian have a brother or sister and did we as parents not have the right to experience parenting from the different angle. Believe me looking after a disabled child is actually all I know at the moment, and I get great satisfaction a pride from Kian. I never said 100% after I had Kian that I would have another child, but Kian loves children, all children and I cant imagine my childhood dare I say, without my brother and sister.

My first decision was to pull out of the great north run, I know people will say pregnancy is not an illness but we didnt want to put anything to chance. I phoned the drs to see if I needed to go and see a dr but because of having the two tests I just had to register with the midwife. Being at the same drs from when I was pregnant with Kian, there is one main midwife and I did ask whether I would have to have her. She was not very approachable when I was pregnant with Kian, and I knew this time round I needed someone to be comfortable with.

Myself and Craig went to meet with Kian's genetic dr about the pregnancy. I have always said how nice and approachable he is and stick to that. He was very pleased with our news and spoke about our options. He did explain that there were tests we could have which could test the baby for whs but because me and Craig were not carriers of the gene then there would be a higher risk of miscarriage than the baby having whs. We came away from the appointment planning to have extra scans and just thinking on going ahead with the tests. Something had struck a cord when I got home with what the dr had said that we hadnt known before. He said that though we did not have the abnormal gene, Kian having whs could have happened 3 ways when conceived. If it had been two ways, it would never happen to us again but if had happened the other way (and it had to do with how the sperm meets the egg) then there was a 1 in 200 chance of it happening again. 1 in 200 didnt sound low risk when considering origionally we were told Kian being born with whs was a 1 in 90,000 chance!

The next morning we rung and told the dr we wanted to go ahead with the test on the baby. This is something that not everyone would choose to do or agree with but it was our decision.

We were booked in roughly going on my dates so that I would have a CVB test on the baby at 11 weeks. This was booked a the RVI. I was very nervous, worked up, anxious, frightened about this test. What if I miscarried? What is the results comes back bad? It was a horrible run up to the test and one where I felt I could not just let myself enjoy the pregnancy. It is very easy for people to say, it wont happen again but when you care for a child with a disability, it is heartbreaking at times. Not for your own selfish reasons but for what your child goes through and what they wont be able to access in life. But I must add, I hope that I give Kian the best quality of life possible and the most opportunities possible. And believe me he is very happy!

The day of the test came and I knew we would meet with a cousellor from genetics. I wasnt prepared for them to try and talk us out of the test. It clairified how serious this test was and they asked if we wanted to wait for the amneio at 16 weeks. I had some time alone with Craig and we spoke it over and agreed we wanted to still go ahead with the test if safe as possible. We had been told that the dr would not go ahead with test if she thought there were too many risks. So we went in and first of all saw our baby on the screen and the heart beating. That was a relief because it had been something I had worried about, getting there and there being no heart beat. Where the placenta was, it was not in the best place for the test to go ahead as the dr would have a struggle to get there. They said instead of a needle through the tummy they could try vaginally but we had already decided no to that as there was a greater risk. We booked in for the amneiotesis at 16 weeks.

Going home, I had thought we would have had the test. I was relieved I hadnt had it, but now seeing the baby move and heart beat I did have second thoughts about going for the amneio. Armed with scan pictures I felt like we still couldnt let everyone know our news yet even though I was 12 weeks.

So the amneio was at the beginning of december and I did go ahead with it. I think I would have still went ahead with the amneio anyway as I felt I wanted to enjoy the pregnancy but couldnt with fear of the unknown.

3 days after the test I found out the quicker results which was a count of the chromosomes. We were told that the results up to now were fine and that we had no worries about syndromes such as downs syndrome amongst others. We would find out the results for other chromosome abnormalities including whs in 2 weeks as they would have to grow what they had took from the baby. We did find out that day also though that we were having a girl. That was quite emotional. Then last monday I received the call to say that all the test results have came back fine. It was such good news to hear. So though chromosomes arent the only problems that can arise, it is a weight lifted!

Kian will be 4 next week, I cant believe where the time has gone. His progress is very very slow, but he makes it and he has fun in the meantime. Seizures arent completely under control but they seem to arise when he is poorly. My mission of 2011 is to get Kian into a school which meets his needs and challenges him too. This is a whole new stage for us, but hopefully we can get it right. I know it is very exiting to think of Kian with his little sister xxx

An update on the little fella

Things are going pretty ok. Kian is well and healthy though sometimes I regret admitting to that, as there can be something lurking around the corner.

We are still persisting with the hearing aids. At his last ent appointment the dr said his ears and grommets looked fine. We go back in 2 months for a hearing test and possibly new moulds for the aids. I dont think the hearing aids bother Kian, but he is terrible for pulling them out now, but he does this with a smile and mishief in his eyes.

Physio is going well. We have some ideas of getting up and down stairs which we are working on. We are aiming to bum shuffle down stairs and to crawl up them. When Kian is in the mood it works really well, otherwise that mischief returns to those eyes and it is, lets try another day. We are still using the lycra, and I feel it is hard to tell whether it does make a difference or not, but I am pleased we have it to try it.

Speech is going more slowly than anything. It is hard to know what Kian's hearing is, but he does understand alot of what is being said to him. That is at Kian's stage, not maybe the average 3 1/2 year olds understanding. I am attending a meeting on wednesday which will possibly turn into workshops for parents. They will be based on the hanen way of progression of communication.

Kian had two weeks back at his special nursery after summer holidays and we had a few issues. First week he came home on transport wet through two layers of clothes, top and bottom from playing in the water, then the next day he came home without his coat (not for the first time), then the second week he came home before 12pm (school finishes at 12), his hearing aids were in his bag minus their batteries and his lycra had not been put back on after swimming. There was no communication of any of this in his home school book. I called to find out what time Kian finished and I was told someone would call me back. His teacher called back and told me sometimes they finish at 11.45 because they sometimes start at 8.45. This was strange as our letter of pre school times is 9-12 and Kian doesnt get picked up till 8.45. She went on to tell me that the specialist professions had told her not to put his aids and lycra back on after swimming. The way the conversation had been I felt fobbed off and decided to keep Kian off nursery the rest of the week until we could feel comfortable of what was happening at school. Myself and Craig went into school today to meet with the head. She told us that sometimes Kian could be put on his transport before 12 if it was there,and they had sung there home song and had their coats ready. I asked why we were told that Kian would finish school initially at 12 then if that was the case. She said she would look into it. It may seem finicky but I need a level of consistency as well as Kian. I could have well have been not at home the day Kian returned home before he was even expected to be finished. We spoke of how the professionals had told us that hearing aids and lycra were fine to be put back on after swimming. The head told us that they were obviously being given different information. I am more inclined to think that the teacher made an excuse because I asked the question. I am realistic and human, so if Kian does come home without his lycra on or his hearing aids in, I can fully accept that every day is not going to run smoothly, but I dont expect to be fobbed off.
The end result is that before our meeting, the head has instructed staff to put bags and coats in the classroom before they finish so everything goes home, Kian is to be checked after water play and changed if nesicary. A care plan will be put together so that at home we know what to expect is happening at school. The professionals are to give there instructions so home and school have the same information. I later got a phone call to say that transport could arrive before 12 but the students would not be out of school until 12. We did make a point of saying that whilst Kian is in their care at school we do trust their decision of what is best for school. But we do need to hear the truth.
???? For me I feel that this has been unnessicary stress. All of the above should be happening anyway. All children are their own individual person with different characteristis, but Kian goes to a nursery where the children are as above but they have their difficulties also. Im glad we had the meeting, but it is a shame it had to come to that. The head teacher has acted promtly and hopefully everything has or will be resolved.
In the year Kian has been at nursery school I have tried to help out at the school, whether by selling raffle tickets, sending in bits for raffles, supporting their fayre, but I still need to and will speak up when things arent right for Kian. Is it possible to have the balance?? I would like to think so. I have heard many stories of professionals becoming defensive to parents and sometimes other services. I feel I have had a few encounters like that myself now. Parents do not want to do anything to hinder their childs care but sometimes things have to be said. I do wonder why some people are automatically defensive to parents? Not sure I will ever know the answer!

Following In Footsteps

We have been on this journey of disability for over 2 1/2 years now. People speak of the norm, and some would say my family is not the norm. But for us the majority of the time my life feels pretty normal. Sometimes you do get a harsh reminder that you are not perceived as normal. For me this is coming to terms with how relaxed people are using words that are sometimes directed towards disability. I know these words are not being directed to Kian but I am probably surprised how easy these words can be said. I had a conversation with a friend recently and we spoke of the word handicapped, how not many people use that word now and it seems strange at times to hear it, though a few years ago that was the word that I would now say has been replaced with disabled. I wonder if the word disabled will be replaced in time???

Craig told me today that there is nothing better than seeing Kian's smile up close. Im sure that is the opinion of most parents, but Craig tells me that when he smiles that is what he remembers when he thinks of him at night when he cant sleep. Craig does worry what might happen to Kian if Craig and I arent there for him anymore. I have heard some tragic stories of children with WHS. It is tragic I can only imagine to lose any child. But as I have said before I dont plan on Kian going anywhere, I cant let myself think that way. What Craig said to myself which I will always remember is that in Kian's mind he is happy, he knows no other. And that I am grateful for.

When Kian was diagnosed I was desparate for information. It was the medical profession that I was looking to for answers. But like I hear over and over again from parents of children with additional needs or a disability it is parents who you most learn from. As much as I share what I can in this blog, I am quite a private person and one not to share my feelings. Private you may think, writing all for anyone to read? Like any parent in my situation I wonder why this has happened to my family. Sometimes you do not want to hear that special children only go to special parents. I am grateful to have Kian and I get so much joy and pleasure from him. Alongside that though goes the worries with the seizures and the weakness of his immune system. But the good times more than outweigh the bad.

It is lovely to hear what other WHS children are up to. I wonder if Kian will achieve that paricular milestone. WHS has such a wide spectrum, you have to keep teaching and encouraging. I have heard fantastic stories of what children are achieving. Some people may wonder why such milestones are celebrated but it is a massive achievement for our children. The children who have been wrote off or extremely underestimated.

Though Kian is only 3 1/2, there are families with younger babies that you come in touch with and you hope that their children wont suffer specific symptoms of the condition. One of these would be seizures. Kian feeds orally which we are grateful for but the seizures for us are still not under complete control. There are so many different problems that can occur with whs.

For myself it has been lovely to meet new families with children with WHS. For families I do feel it is sad for the children to have the syndrome, but nothing stops these children. They and their families keep on striving to do their best. What I found though is the new families coming through the process, you hope their children dont have any of the symptoms such as seizures, and many more things. It is possible for some children not to suffer with them. But I hear of new families going through the process of what we went through over 2 years ago. You really dont want their child or family to go through that difficulty. But then you hear that another child is suffering from seizures or they will be giving a feeding tube. You hope for children to avoid that difficulty even if your child has that problem.

From the parents that I have met, I can imagine that Kian is going to follow along certain footsteps, also I can see that my feelings and emotions will go alongside certain ones. I can also see new families going through what we have. I really hope for the world to progress with disability and for WHS so much more awareness needs to be made. Our main focus is Kian but I am aware of children who will follow in his footsteps and I feel this is so important too.

Kian does have a disadvantage in life, but there is so much possible for him. He will develop and achieve and we as his parents will help him do that.

We love that mite very much xxx

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!

Emotional rollercoaster!

Our summer fayre is happening next saturday, which is to raise awareness of WHS and to raise funds to donate to Wolf Hirshhorn Syndrome Trust. I also hope that families have a lovely day and enjoy themselves.

Organising this event has been a rollercoaster of emotions. Lots of ups and down. We have had companies bluntly tell us that they cant support our cause. In this current econmic climate that is totally understandable. On the occasions that I have been in a store asking for support in some way, generally with a friend, it is hard when someone does not want to even hear what you are arranging your event for. But the people that say yes, more than make up for the harsh no's. I have been so touched when people donated for personal reasons. Sometimes you really dont know what peoples stories are!

The main thing I probably wanted to explain in this blog is about a new experience.
It is difficult to put into words.

My Kian as you will all probably know was born in 2007 and I feel very lucky to have him. Last week when having an assessment done at home, the assessor said "he drew the short straw". I replied " well maybe, but he is lovely". The lady didnt stay long and we were okayed for our assessment. It is hard sometimes as you want people to know they are luckier in life than others, but as I have said before I do not feel unlucky to have Kian. When I check on him in bed and I know he is fine I look at his innocent little face, his cute little toes and I get that surge of love.

But I am now in contact with parents of children with whs who have lost their fight for life. This is hard, but I am so privilaged to become to know them. I look at pictures of beautiful, innocent children who should be here. Each picture has a resemberlance of Kian, and that is because of the syndrome. Our children tend to have a look of each other at some point. I am confused of how I should feel. I feel blessed because I have Kian, but so sad for anothers loss. Craig told me tonight, what would he do if something happens to Kian. I need to be reminded sometimes that Craig feels how I do at times. He does really worry like I do. Reality is something that just all of a sudden hits you in the face. I dont plan on Kian going anywhere, but more needs to be done to look after our whs babes. I know why Im trying to raise awareness of the syndrome, our babies our precious no matter what age, and they need looked after. I want to help make a difference no matter how small!

I am not a religious person by nature, but bless all our children past and present xxx

Risk management or Not!

Kian had 3 seizures in the space of 8 hours on wednesday. Tuesday night he did have a little sickness that came completely out of the blue. He then got a raging temperature that I tried to manage the way we normally do, but a little while later it came back and Kian fitted. Always it is a horrible thing to see. I didnt completely expect the second one as there was no temperature. I didnt have to use midazolam for Kian to come out of them but he went a little over 5 mins. There was 5 hours between the 1st and 2nd then it was 3 hours later he fitted again. Those 5 minutes that you are waiting to see if he can come out of a fit by himself without meds is a long old 5 minutes. I was contemplating calling an ambulance with them being quite close together for Kian. He came out of it and I took him straight to hospital. We live 5-10 minutes from it which I never contemplated would come in so handy. I called Kian's paediatrician before we left as we had an appointment arranged that morning, and to let her know what had happened.
At the hospital though he was a fraction of what his temp had felt previously he was 38.9. They gave a dose of neurofen and took his temp a little while later and it had actually went higher.

Eventually his temp came down and we got a urine sample using a pad in Kians nappy. We were referred to childrens assessment unit. They told us the sample showed infection but they wanted us to do another straight into a bottle. We were at the hospital from 9.30 - 5.30pm and did not get another sample. We agreed to go home and get a sample there and take back to hospital the next day. They could feel something on Kian's chest but said no more about it. They had been in touch with Kian's paediatrician and she said that if there showed a big infection (neumonía), then that was why he fitted and we shouldnt up his meds, otherwise it was up to ourselves to decide to up from 5ml to 6ml.
We decided to up the med. It is a very hard decision to make for parents as ideally I dont want Kian on meds which possibly make him more sleepy, affect his development even more and can cause behaviour problems but Kian doesnt have this many fits, even when he is poorly!

I was at a meeting where I and another parent are giving our opinions of a new service being created in our local authority. I spoke of how Kian had been poorly, when I mentioned his meds, and how at the national conference we were advised that kidneys should be monitored, and our Dr, (who I do have alot of time and respect for) decided instead of doing a yearly test said we will wait until something crops up. Someone at this meeting said "they are not managing Kian's health but they are using risk management". It took what that person said, who has never met my child to realise that is exactly how I feel. WHY do we have to wait until something goes wrong?????????? We had an agreement between the Dr that if Kian fitted twice we would up his meds, now he had 5 and the decision was still up in the air. Dont get me wrong, medicating isnt the answer to everything but I know Kian. I know with the syndrome there is a good chance of Kian outgrowing his fits, and I pray for this to happen. But fits can be dangerous- Fact-
I have got used to the fits but I dont want to become too complacent that I dont recognise he needs more help, and it is very hard to make that opinion while your child is fitting.

Craig came home that day from work, as most people know he normally only gets home on the weekend. The next day as our little precious being was lying in his travel cot where we could see him constantly, Craig said he didnt think Kian would have a long life. This isnt the first time this conversation has came about and Im sure it wont be the last. Some people may think that is a strange thing to say, but in our world you dont know what is round the corner, and though that can happen to anyone, we become to expect things to go wrong. Then the next day at the meeting I speak of Kian and Craig and say Im not expecting Kian to be going anywhere. Another parent who has had many battles to fight says that she is the opposite she doesnt know whether her child might go at anytime. That is what it can be like in the everyday life of someone with a disabled child. If some professionals could only understand that! I dont expect Kian to be going anywhere, and the main reason being I cant imagine a world without my little Kian. Kian who after so many days of looking drained and out of it, has smiled all day. He has been full of mischief, he made it know to be when he wasnt happy or when he was really happy.

Is he worthy of "risk managment", I think not!

I feel my blogs can be serious and sad at times and I am hoping they do become happy and witty, because Kian is a happy little person and I do enjoy him so much. But this is our journey, as it is!

Confused!

Kian had another seizure last monday, his known previous one before that was Feb. He was absaloutely fine on the monday morning and I took him to nursery as norm. A week or two before he had had a cold and there does seems to be lots of colds and bugs going around. At 1pm I got the call from his nursery to say he had had a fit. I got to the nursery within 5 mins. They had administered the midazolam though by how they describe he was possibly coming out of the fit before they gave it. It was the first time that they had saw him have one and I think it is very difficult those first times knowing what to expect. They said he had been happy as normal beforehand babbling and playing and then had just flopped down. They looked after him really well.

Because he did not seem poorly, I and his physio (who was co-incidently at the nursery) spoke of whether he was ready for an increase of meds due to growing. I called our paediatrician to see if we should up meds. It is our normal agreement that if Kian has 2 fits we up. His first one being Feb. She decided not to as his dose it quite high of what he is on. My next appointment has been brought forward where I will discuss this. He will be weighed there and see if there is a growing need to up his meds. I think we should have got him weighed last week and discussed meds after his weigh in. Dont get me wrong Kian is growing though Im not sure it has been a rapid growth spurt, as we know it is hard for our children to put on weight. I more than make up for that for Kian!

That night we had an awful night with Kian. He had a raging temp, though thankfully he didnt fit. With stripping down, damp compress, calpol and eventually neurofen, the temp passed but he couldnt settle. We got him to the doctors that morning. The dr said she thought he had a really bad infection but wasnt sure where. His ears appeared fine. His throat was a little pink. She said his legs were really cold and though she didnt think it was meningitis, we had to be aware that could be a sign. She gave us antibiotics and asked be to get a urine sample before the antibiotics were started. The sample was not back when I was told to ring so I will hopefully get the results today.

ENT appointment was yesterday. Our appointment was very rushed as they were running quite behind and Craig had to get back to work. Anyway, we discussed the palate and he had a little feel as Kian had fell asleep. He thinks it feels normal, but there are other ways of looking but do we go down that route now? And would it actually help? Kians hearing test was terrible, alot of the time he is just not interested. But as it happens he has fluid in both of his ears. His one grommet left in is on its way out. Do we go ahead with more grommets or see if it clears up itself? We have said yes to more grommets, with the thinking that by the time the op date comes through, if the fluid has gone then we dont go ahead. Last year we waited and the fluid didnt clear, so we are going to try it this way. I dont want Kian to go through having an anethestic again, it was awful, but when Kian first had grommets he went seizure free for 9 months. Maybe co incidental, but it possibly did help. Also Ive been told that with glue ear you hear echoey sounds, if it is like that for Kian it must be so confusing.

Sometimes I wonder if people think, you have a disabled child, just accept it and stop trying to find things to mess on with Kian. I am proud of my little Kian, his disabilty is part of him and that is not going away. But there are so many disadvantages that Kian has that I will look into as many things as I can. If it is something that myself and Craig think is worth a try then we have to try, but we always think of all the outcomes and take on expertise of professionals as well as other parents opinions. There are no magic wands for our children and no miracle cures. Kian has alot of hope and alot of love around him and that is ultimately the most important thing!

History continued - My dad

My dad suffered from Parkinsons Disease for years. He just lived with it, and it became normal that my dad had this illness. He could be quite funny but he could also have quite a huff if he wanted to. ??? I wonder where I get my huffiness from!

I could speak loads of my dad but I will try to keep it brief. He was over the moon when I found out I was pregnant. Even with his illness he was a massive help to us when Kian was born, and Kian has such looks and tendencies that really remind me and my dearest of my dad.

Now I am in the world of disability, Ive come across so much that would have benefited my dad. It is a shame that not many people take on the responsibility of letting people know what is out there to help and make life more enjoyable. My brother cared for my dad for 12 years, I imagine a very hard task, but I cant imagine anyone else who would have done it as well.

When Kian was diagnosed, as I have blogged before, I chose not to have the blood test on myself immediately. I wanted to focus on what Kian needed. When we thought more on the blood test and myself and Craig felt ready to have it, I would not have been surprised if the blood test came back with myself being a carrier. This I probably thought because of my families history. The test came back showing our chromosomes "normal". Again as I have blogged before, my dad had passed away 3 days before our results came. I would have liked my dad to have known the results. Kian was 17 months then. I know he wont remember his grandad but I know that my dad does live on in Kian. I think my dearest agree too.

Im not sure if I was relieved that I was not a carrier of the gene that can create WHS. Another parent told me that they felt if they had carried the gene, whs happening to their child would be be more understandable. Spontanius is how it was described to my family. I know of a family who did not do the test and have went on to have a healthy child. I know of parents who conceive and then have a test to see if their child has any problems. It is a hard, but personal choice to all. I dont think there is a right or wrong.

When I told Craig of hearing of a relation to someone I know miscarrying a child with WHS, he said " We were meant to have Kian". Im not sure of what I feel when it is said disabled children go to special people, we are not perfect, but I know that we were meant to have him, my Kian David Henaghan!

My History

I remember when my mam first got her wheelchair. It wasnt the norm to see friends parents with wheelchairs. It wasnt that my mam had a disability. Or that is what I thought at the time. She was waiting for a transplant. At first it was a heart and lung, but when it came to her having it, she was given a double lung. I must state that my mam was a smoker. She had gave up when her health began to deteriate but by then it was quite in a poorly state. My mam couldnt walk to the gate from our front door without becoming breathless.

One false alarm and then she was in having the transplant that we thought would make the difference. Alot of pressure was put on our family and I think that is when the signs of my sisters epilepsy began. She was doing alot of running around and if I was her, I would have felt a great responsibility. Emma had shown signs of fainting and when staying overnight with our mam she had a seizure which I think began the diagnosis of epilepsy. Previously beforehand she had been taken in to hospital and I remember a cousin coming to school for me. Head of departments had came into class for other people before but never for myself. That time it had been for me. I thought the worst. I thought something had happened to my mam. It wasnt. It was my sister who was in hospital and she was ok and being monitored. I felt a relief. As an adult now I can think I should have been worried about everyone equally but at that time for some reason I thought it was bad news about my mam and I was pleased it wastnt.
There was one girl at school who used to always make a point of asking after my mam. I never realised she was kind of in the same situation.

We got a second call for our mam to go for her transplant. After the transplant, myself and my brother were eventually allowed to visit our mother. At first it was just our dad and my sister for health and hygiene reasons. Nothing prepares you for the Intensive Care Unit. You go in wash your hands and there was our mother lying in a bed with tubes everywhere. It was heartbreaking and when I cried I remember a nurse crying. That possibly gives me a bit of hope in the NHS system.

My mam eventually went in a ward and was givin exercises to work on. We saw her and she wrote us letters telling myself to do well on my duke of edingburgh that I was doing at school and I cant remember what she said to my brother and sister. We then got told to expect our mam home for christmas, she had been away since July, this was good news.

My dad came home and said that he had been told our mam wont last the night, this was October. I cant remember the exact words but it is more caring than blunt how our dad told us. Im not sure how I slept but my dad came into my room roughly at 8am and told me my mam passed away at 00.03 that morning. I didnt know what to feel. My friend knocked on my door at 8.30 for school as that is how unexpected it was for my mam to pass. I tell her the news and I hug her. We have been friends for a long long time. That is my first main tragedy of life!

A very busy Tuesday!

We begun our tuesday by Kian getting ready and put on his transport to nursery. Myself and Craig had an hour and half before we were to go to the nursery for a couple of meetings.

We spoke informly to the head mistress at Kian's nursery. We spoke mainly of communication for us as parents. We decided for Kian to use transport as it is a great help but we still want good communication from nursery to home. There have been a few issues regarding snacks, for instance Kian's book telling us he had banana for snack but him having a segment of tangerine in his mouth when he came home, another saying he did not have a snack because it was hard carrots. ??? We were told that Kian would have been given something else in those instances, but a bit more communication to us at home would clear those things up. Also another parent told me that before the easter the class teacher was absent for a few weeks though we werent aware of it. Im sure Kian was perfectly looked after but at Kian's age without his difficulties he could possibly of told me his teacher wasnt in. I dont want to fall in the habit of thinking "well we dont need to know these things" or does it matter. I do want to know who is looking after Kian and if Kian cannot tell me then I expect communication. Is this unreasonable? Is this not what all parents would expect disability or not! We have also asked for Kian's statement of special educational needs to be started. The school did not want to start until Feb but have agreed to begin the process after summer. I was concerned of losing vital time that Kian could benefit from having a statement. The worry from the school is that the statement could be out of date by the time it is complete, but I would rather be sure.

We then met with Speech Therapist, Hearing Impaired Teacher and Kian's Class Teacher of two days per week. We expressed our concerns, wishes and expectations. It has been agreed that a ST assistant will spend time with Kian twice per week in quiet and busy time to assess where he is at and get to know Kian. The class teacher was of the opinion that Kian gets what we were asking within his nursery time. Nursery time has previously been 7 1/2 hours over the week and in that time he does group music and movement, swimming and rebound. Speech therapy we were told would transfer from the home to nursery when he started so we did and do expect for particlar specialised time to be spent with Kian on communication. I also dont think it is too much to ask for that someone gets to know Kian over time to see what his capabilites are. I said that I felt we were getting the minimum help possible. The hearing impaired teacher is going to come out to the home and do some sessions there. She is really nice and I have said in previous blogs how good the hearing impaired team are. I dont want to be negative about ST but since having Kian and if Kian is involved I speak as I find. Hopefully we will see and feel an improvement of this service for Kian. It is going to be reviewed mid term how the one to one time is going. I only hope that they dont remove this help if they dont see a great deal of improvement in a short time. Time is what Kian needs. In one sense Kian has all the time in the world but in another you cant get back time.

Next we went to get Kian measured for his lycra shorts. He was really good and I cant wait for him to give them a go. Im not expecting for him to take an immediate first step but hopefully it will give him more support which will give him the confidence to try. He is very eager and determined. He is also ready for a new pair of paedro shoes. By looking at his feet you can see he still needs support which the shoes will give. It will be his 3rd pair, and I remember initially being told he would not benefit from them. It is always worth asking and then maybe asking again! You never know!

Kian was funny at the baby stars group we have been to this afternoon. He kept on trying to take other childrens toys and though I strongly dont find it funny him doing it, I am pleased as it is another development stage he is going through. We do tell him he has to share and we return the toy to the rightful owner. We want the balance of Kian knowing what is right and wrong and giving certain allowances for his disability. It was funny though when he had ate his cake and bum shuffled over to a little girls cake and quickly put it in his mouth before I could stop him. He knew it was food and he knew he wanted it. I wonder where he gets his love of food from!

Friends Old and New

The easter holidays have been great for catching up with friends.

Just before the hols we were able to catch up with my friend Maz. Kian and I had not saw her for ages. I first met Maz in 2005. When I found out I was pregnant in May 2006, which was roughly a couple of hours after my driving test( 2nd time round passed), Maz was the first person I told. I called her as I was so in shock. I had just bought the tester on the off chance, just after I had been into a shop to buy a bottle of Moet to celebrate my passing of Driving test. She was actually in town shopping and had my call on hands free as I told her the news. She was a friend I met at work and she kept my pregnancy news until I was confirmed 3 months gone. What a lovely lady she is. She is a newly grandmother so had lots of toys and treats for Kian when we visited. He had a fantastic day! Kian had so much fun, love and attention that day, and I came away I think a half a stone heavier for what she fed me. Maz is someone who would have made a great childminder / nursery nurse. We spoke of that when we worked together and when I saw how she was with Kian, I know she would have been fantastic!

I drove back to Catterick one day with Craig so I popped to see my dear friend Rena. The last time we saw each other was when I was pregnant. It was lovely for her to see Kian for the first time. What is strange or co-incidental is that myself and Rena worked together a long time ago, but now she works with adults with learning difficulties. She started that job before I had Kian. What I love about real friends is that, it doesnt matter how much time you have had from seeing each other, when you meet up again there is nothing strange about it. It is like you only saw each other yesterday or spoke on the phone an hour ago.

It was lovely to catch up at home with one of my oldest friends. We used to live round the corner from each other when we were very little. We had matching prams and I used to love staying over on a weekend. Fast forward 15 years. In between that S had came to our night time wedding do, we went to her engagement do and there had been a letter or two in between. Then FaceBook comes along. Kian loved spending the morning with her two lovely children. Again, it did not feel like there was all that time in between and here were "our" children playing. Kian, bless him, enjoys the company of other children so much. He squeals with delight when other children are getting excited. Hopefully one of many catch ups.

My everyday friends know who they are. They are at the end of the phone. They are there for a catch up, be it with kids or without. They are the friends that are helping to arrange a charity event to raise funds for Wolf Hirschhorn Syndrome Trust. They are the friends who are there for me and Kian. They know how to pick you up. They know just to be there for you without words. I have had my circle of friends for years and that has not changed with Kian. When I look at other blogs or fb profiles I love to see to loyalty and love of friends, it means alot. My brother and sister I count as friends as well as siblings. Without them I would not be where I am with Kian.

In our now familiar world of disability, we have new friends. Maybe our paths would not have crossed if our children did not have the issues they do, but I have met some lovely people. I am meeting new parents that are coming into our world. I would like to tell them that this path is not as horrible as what some people say, but the truth is, it can be horrible. At times it is brutal, you have to fight for help, services and support that should be there for your family. But like I have said before and will hopefully continue to say, when you strip all the ugliness away of fighting for services and entiltlements, we have very special children.

When I check on Kian for the 6th, or 10th time that night, I could squeeze him with love. I love him because he is there. I love him because I am proud of what he has achieved that day. I love him because each time I walk into his room I never know if he will be breathing. This may sound melodromatic, but epilepsy does that to you. I check on Kian many many times of the night but I could be worse but we have to balance out worry v life. I do not feel unlucky to have Kian, I feel unlucky that he will not be able to achieve all in life that he should have been able to achieve. But Kian will achieve what we, family, friends and the community give him opportunity to achieve. He is a capable little boy, maybe just not in the ways that some people expect!

Peter Pan

Craig and I were having a conversation yesterday which always crops up now and again. We spoke of what Kian may have been doing at his age without his disability. 3 year olds are doing quite a bit and are very inquisitive. Kian is very inquisitive in his own right. I remember a therapist saying to us a long time ago that for "everyday parents" the development of their child is like a train going by quite fast, you dont see every single window on that train. But for us what we experience is that we see every single window on that train. Each element of Kian's development is a massive step and we get to experience that and enjoy it. We know that the money we put in Kian's bank account each month will not be going to pay for driving lessons or for university. People may say you never know, but I do know that those are two things that Kian's money wont be used on. The gap of development delay does widen but the thing that keeps you going and keep striving for more is that Kian continues to develope. He is definitely a tryer. There is not enough medical interest in Wolf Hirschhorn Syndrom to make a difference at this time, this is my opinion, but I am grateful for all of the families that I have met with children of the syndrome. Without them my knowledge would be little. At the end of our conversation yesterday, Craig said Kian would be our Peter Pan, he would be young forever and I think he probably will be!

It is our 4th easter with Kian, how time flies. Next september he will be at school full time, that is scary. I remember not long after diagnosis some people asking if Kian would even go to school. There is alot for people to know and learn about disability.
On saturday we visited Kian's great aunt and uncle up at a caravan park. He loved it there and I have to say I love the atmosphere that you get from that environment. Over the last two years we have taken Kian to different sites and we have all really enjoyed them. It would be nice to have somewhere of our own to go to where Kian could feel comfortable and where other children would become familiar with Kian and his needs. Craig says we will buy one when he gets his pension from the army but we may have to work on him before then.
On sunday Kian's grandad took him for one of his famous walks whilst I made dinner. I quite enjoy making dinner on special occassions. Dave's special walks means it is sometimes best not knowing everything that actually happened on that walk, I say that in the nicest way. Kian did come back with a new dummy, a bag of candy floss, and plenty colour in Kian's cheeks. We then had a lovely dinner, I may be biased with some great company.
Two of our neighbours called to give Kian an easter treat. Some children were playing outside so we took Kian outside to watch, he got really excited watching them. One of the boys said, when Kian is older he can come and play cant he? Bless him, Im not sure what the future will hold, but I know we chose the right street to buy our house. It is not a big house, but I love it and the street is right for Kian, I know that.

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.

Quick update

Kian has got his appointment through to be measured for some lycra shorts. This is at the end of April. I think his top half of his body could be helped also but we will see how the shorts go. Hopefully this will give more stability for Kian to stand and hopefully take those steps for his physio goal!

I went to a makaton group yesterday at Kian's nursery. It was really good and I learned some new interesting signs. Most of them were food, yum, mine and Kian's favourite thing. Going to the group I think gives you more encouragement about signing. The therapist running the group was lovely. I also met a parent who has a little boy in Kian's class which was lovely. We will hopefully keep in touch.

Our OT is coming next week to see if she has a chair that Kian could use at home for activites. The one we have is a little young for him now. I was looking forward to going out and buying a little table and chair set for him, but if the OT has something more suitable we will go with it.

6 months for Kian without a seizure. You really do dread writing those words as you never know what is round the corner. He is doing really well at the moment and seems so happy and healthy. Fingers crossed.

I went to a workshop on tuesday for confident parenting. It was based on your children having behaviour issues. My reason for going was to be proactive about Kian and his behaviour. He gets so frustrated through lack of communication and mobility. I found it quite useful. Some stories you hear from parents, especially in mainstream school are horrendous!

Im off to a workshop next week ran by Afasic who are a speech and communication charity. This is about advocacy for parents. I think this will be greatly helpful! http://www.afasic.org.uk/

Multi-disciplinary meeting

Last week we had Kian's multi-disciplinary meeting at nursery. Physio, OT, Speech, Kian's other nursery's key worker attended alongside, me, Craig and Kian's nursery teacher.
Overall it was a positive meeting. Alot was spoken of how Kian has come on in personality and determination. His target from his physio, is to take 2 independant steps. She said it was an ambitious target but she felt with work and encouragement it was possible. We are waiting for a walker for Kian and also an appointment at a clinic for him to be measured for a lycra garment. Hopefully this will give him more stability.
OT is still working along the same lines of trying to have him on his tummy. But because he is quite determined not to be handled doing this they are going to think of other activites to encourage his co-ordination.
His teacher at his nursery said she felt Kian had settled in well.
His nursery key worker from his private nursery had lots of positive things to say of Kian. She also had in mind to created a book with photos of me and Dad, and then his favourite toys, and to say the words to him. She has noticed him making different sounds to certain words, for example "hello", and "look at this mess".
Our speech therapist felt we could not assume that Kian is making a particular sound to a word or an object as he would have to understand what the word or object means. This is where I find a large problem! All children can be SO underestimated. I know what words and objects Kian understands. I will ask him where something is and he will get it, for example, his ball, chair, train, boat, igglepiggle, the list actually does go on. I dont want to be opposed to our therapists opinion but I feel that opinions like that need backed up, and it wasnt. She see's Kian briefly at nursery and informed us that he is too tired to participate in her activities, after a physical activity. So I wonder what is being done about that? Nothing until we persist and pester, which you really do get tired of having to do. I say this as my opinion at the moment. Kian has developed with communication but I cant help feel that we are being let down by this service and that the therapist doesnt really know Kian. We do not have a regular date to see her which I requested at the meeting, to have. I will meet with her after easter. I am planning to film Kian as much as possible to show what Kian is able to do. I hope this will help in some way. I really want to have a positive opinion about this service, but I dont at this time. I may be seen as an awkward parent for asking for help. The majority of professionals have not come across whs, does this make Kian any less important than children with more well known conditions/syndromes. All our children deserve the best possible service available and more.
The nursery are going to create some pictures for home and private nursery to use for recognition. I see this as a positive approach.
Kian's statement will be begun in September, which will determine what help he does need and where his needs would be best met!

Half term appointments

Dental Hospital
We had an appointment at the dental hospital for Kian because of his gums being indented above his front teeth. Craig had been the first to notice this, so we got it checked out with the special needs dentist. He decided to get a second opinion, though his opinion was it was fine but there is an operation to correct it. It was our first time at the dental hospital, and it has been the only place where I have saw a sign that said " if you wait 20 mins let the receptionist know". Well we didnt have to wait long. Kian has had a cold and been not himself at all so we werent sure how the appointment would go. He was quite good for the dentist. The dentist said his teeth look fine, though his top ones look like they may cross over. This can be reviewed later on and helped if needed. I do remember another parent tell me that they had their childs teeth corrected, but after the brace the teeth went to how they had been previously. Not sure if this is to do with some children not getting their second teeth. Kian just has to wait for his bottom back two teeth to come in. He is teething terribly at the moment and drooling constantly. The dentist said she didnt think we would get a good x-ray for above his top front teeth, but it will be monitored and she did not think it would cause him any problems at the present. She mentioned that our local dentist had noticed a small piece of skin attached to Kian's palate, and there was possibly a bit of bone missing. I questioned this more and she said she definitely didnt think this was a problem or would have any baring on speech. We will see our local dentist every 6 months and see how things go.

Paediatrician appointment
We see our paediatrician roughly every 4 months. She is a lovely doctor. She noticed a big difference in how mobile Kian was and he was giving her some nice eye contact. He is now 12kg and 88 cm long. She suggested speaking to the physio about a walker. I feel that it may be the time to try a specialised walker but we shall see what our physio says. She comes next week. In the meantime we have been letting Kian use the baby walker, though alot of professionals class this as a big no no. I spoke of how I feel I need to understand about speech and communication more. Speech is the service we have that does not feel gelled. The other services keep you involved and enthusiastic. I dont feel we get that from the speech service. They have recently held a workshop about their service and how to engage with parents. Hopefully this is a step forward. We discussed Kian's behaviour as he is a little flighty with his hand at the moment, usually with me getting a smack of him on my face. Hopefully this is a phase that will pass. Kian does understand "no", but at times will laugh when told this. This is a concern of mine, but we will be persistant and direct and hopefully this will pass. Our doctor is going to write to the ent consultant about what the dentist said about Kian's palate, and ask him to have another look at it. She said it is only a thought but with Kian not sleeping great during the night and coughing, could it be that his liquid supper is lying where is shouldnt. We will go back in another 4 months, but will be having a multi disciplinary meeting soon where all the professionals meet with us to discuss Kian.

One thing the doctor asked was whether I have any friends at the mainstream private nursery Kian goes to. He only goes one day and I am generally in and out. But I did go to baby group with a mother who had two children go to the same nursery. Contact has eventually decreased to nothing, though if we saw each other in the street we would definitely chat. One clear thing I remember is when I told this mother that Kian was going to this nursery, she replied that she didnt realise that the nursery took children like Kian. That is something I will remember though honestly I know she thought nothing of that comment. Alot of people need educating. Sometimes you feel like you have not the energy to be the person to do it. There has been a few times it has crossed my mind to take Kian out of the mainstream nursery. I am so pleased I havent. It has been a massive part of Kians development, no matter how slow. Kian's dieticians child goes to the same nursery and has been in the same class at times. She told me that her daughter said to her once, Kian doesnt talk and he has really small feet. She wasnt sure of how much her child would know about Kian. Children are so honest, I found that comment, sad but funny at the same time. It is a sad thing that Kian has this condition, and the live that we have to lead through it. It is extremely hard and draining, but I never ever think that Im unlucky to have Kian. I believe people should appreciate what they have as you never know what is round the corner or what could have been, but we are lucky to have Kian, he is a sweetheart!

Feb 10

Kian's physio's have just left our home. We had a meeting with his main physio, his TI and a physio from his special nursery. Kian was supposed to be at nursery today but he is a little unwell. It seems to be a bit of a cold but he is getting a little hot too. I have kept him off nursery to be on the safe side. The meeting was to discuss how things are and if we were happy with what service we are getting. At the beginning of our therapy journey I was not happy, but since we had our new physio, who we have had for almost 2 years things have greatly improved. She speaks to you with feeling and a caring attitude. Our first physio made us feel like Kian wasnt worth the bother. It is awful how many professionals, parents come across like that. The physio TI would come out every two weeks but we have now stopped that, and the main physio will come out to the home once a month. It has felt time to move on slightly.
We are waiting for Kian to be assessed for lycra. After seeing some fellow whs children using theratogs, braces etc I asked our physio about such for Kian. At the moment she feels that Kian is too good for lycra, which is what was suggested our local service supply in their budget. She feels that Kian is close to stepping, that it is not totally balance that is stopping him but confidence. I have a lot of respect for the opinion, but Im not sure. I am of the opinion that if there is something possible to help Kian then we should try it. We are going to try neoprene swim trunks to see if that makes a difference as they are meant to be similar.

Nursery is going well, I am looking to finding out about statements which guarentees your children accesses what they need. Kian's nursery is an assessment nursery so he accesses all the different therapies but his statement will be begun next year.

We think the hearing aids may be helping. Kian will sign baby and say, ah which has been progress. If he is eating and someone has said "what a mess", it has sounded like he has tried to copy. This has given me hope that Kian might one day say a word. Our genetic doctor told us that Kian will never speak sentences like you and I, but words are very possible. Let's hope. At his monday nursery, his keyworker has told us Kian does not sign as much but is making more sounds. I still do not like putting the hearing aids in, but I am hoping it will get easier. He wears them all day unless he is sleeping. We have a hearing test in two weeks. When we were at ENT, the doctor removed one of his grommets that were on their way out. The other is still in. He hopes because Kian's adnoids were removed that he may not need grommets again. We now go to a monthly group which is for children with hearing impairments. There is beautiful little girl who is profoundly deaf, she signs lots and is very clever. Then there is an almost ready to walk 9 month year old who has her little pink hearing aids. All the children were fantastic and their parents were great. I felt very comfortable meeting them all and I think it helped that the group are ran by the hearing impairment team. They have been one of the nicest teams I have come across.

I have become a member of the Steering group in our area. They aim to arrange 2 conferences a year for parents like myself to hear from professional, organisations and other parents. There is also alot of other work being done in our area to improve the lives of children and families with disabilities. I have become involved as there is so much that we have not been happy with as a family with a disabled child, but also we have felt let down by the services at times that I want to be involved to help make a difference for the future!

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!