Birthday Blog!

Well we've reached the grand old age of 2! Hurray! I thought I should write a little blog entry about the significance of this birthday.

When we first received William's diagnosis of Lissencephaly at about 22 weeks into the pregnancy one of the first things we did...google it! One of the first things we read was this little gem from wikipedia...

"Lissencephaly, which literally means smooth brain, is a rare brain formation disorder caused by defective neuronal migration during the 12th to 24th weeks ofgestation resulting in a lack of development of brain folds (gyri) and grooves (sulci).^[1] It is a form of cephalic disorder. Terms such as 'agyria' (no gyri) or 'pachygyria' (broad gyri) are used to describe the appearance of the surface of the brain. Children with lissencephaly are severely neurologically impaired^[2] and often die within several months of birth."

However, when we read it the last bit said, children rarely live past the age of two. We soon learnt it wasn't that straight forward. Children like William rarely die from their condition, but from complications associated with it. In William's case the biggest threats to his life are chest infections and seizures. Either of this could become major problems at any point.

However, from the moment we read that we had the age of two stuck in our minds. And now here we are! We feel so happy that William has done so well and reached this wonderful age with relatively few major complications

Many of you will know we're throwing a bit of an extravaganza of a birthday party at the weekend for William. The theme is rainbows. I partly picked it because rainbows are so good to look at but I also picked it because in the Bible God sends a rainbow as a symbol of his promise. 

When Steve and I got married there was a particular Bible verse that kept popping up: "For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." (Jeremiah 29v11). Throughout our pregnancy with William and the difficult times we have faced since it's been so hard to keep hope in that promise. We know our future won't always have William in it and it seems so hard to see how we will get through that. I think I chose rainbows because God has brought us this far and now as we face an uncertain future we need to remember God's promises, that he gives us hope and has a future for all three of us.

Two years ago we were in hospital having just had William and I felt so overwhelmed, uncertain and scared about what was ahead of us. We had a tiny little baby who had crashed into our world, turned it upside down forever and who was very scary to look after! All the things we had thought we'd do one day as a family had to be re-thought. I always used to say I'd take my children to disney in florida one day, that was one little thing that was probably not going to be possible. At the time I felt resentful, hard done by, and miserable. 

Over the last two years we've gradually got to know William, his care needs have become second nature to us and we've been able to see his little personality grow and focus on him as a person. We are so privileged to call him our son, he has taught us so much about what matters in life. We have met many many amazing people through him. There have been some very hard times, some very happy times, a lot of very sad times but we wouldn't change it. He is one of the happiest people I know, he puts up with a lot of horrible stuff and yet he still smiles. 

So Happy Birthday to our beautiful boy William, every day with you is a blessing and we pray for lots lots more!

Wednesday 10th October 2012

There's a few things I've been musing over lately that I wanted to blog about, but firstly a quick update...

Since I last wrote William has started being sick again. It started with a cold a few weeks ago. The specialist nurse at Addenbrookes has advised this is not unusual with a bug to be sick but if it doesn't die down we can have an x-ray to see whether his nissens has failed or not. The sickness has died down and is no where near pre-op levels but there is still some sick so we'll have to watch this space. Initially we were really upset that the nissens might have failed but now we're just really hoping that the sickness dies off again.

We had a lovely holiday at the start of Sept at Center Parcs. We were really pleased to see other families with disabled children there and in general the place was really well set up for William. We'll be definitely going back and we were very excited to find somewhere close by where we can easily go for a good holiday. For those not on facebook here's our holiday photos: https://www.facebook.com/media/set/?set=a.10100515670026928.2667190.199702150&type=1&l=ca6ea05465. We also had fun making our own music video while we were there! http://www.youtube.com/watch?v=g_deTKZZWhw&feature=g-upl.

In general William has stayed well apart from one cold which is brilliant. It'll be interesting to see how he gets on over the winter months but he's started off well. In the last 6 months he spent one week and then one night in hospital. If he makes it through the winter with that few stays I'll be mighty impressed!

Things are slowly moving along with the house adaptations and the first set of plans have come back and been reviewed and sent back. I'm really hoping the work will begin within the next 6 months. We're still waiting to hear back from the geneticist on the latest gene test carried out. At the moment we're not feeling hopeful that they'll ever identify the faulty gene, which basically means if we go on to have more children we'll have no idea whether they're at higher risk of having the same condition and we wont be able to find out if they do until around our 20 week scan, in the same way as we did with William.

Here's a link to some of my other recent photos for those not on facebook: https://www.facebook.com/media/set/?set=a.10100174233932598.2595430.199702150&type=1&l=8249cc6671 and https://www.facebook.com/media/set/?set=a.10100538570638918.2673349.199702150&type=1&l=7d31a6f682


I've been thinking a lot recently about taking things for granted in life. Ever since having William, one of my biggest bug bears is people thinking they are entitled to things in life, to good health, to healthy children, to material stuff. Having William and meeting many of the other families we meet in similar situations has made us realise how insanely wonderful it is that most babies are born relatively totally healthy. It seems a miracle that most babies are fine while only small numbers have complex problems considering all the hundreds of things that can go wrong. I adore William with all my heart but there's still a big part of me that would love to have the experience of having a healthy child, one that will hopefully learn to walk and talk and call me mum and say funny things, and play with his/her big brother. At the moment we have several things in the way of this happening, we aren't in a position at the moment to choose to have another baby. I have friends and friends of friends who have faced multiple miscarriages, read of families having multiple profoundly disabled children and having more than one of their children die. If you're one of those people who has never had to face any of that or who has a healthy child, don't ever take it for granted, consider it a miracle every day that you have them. William is a wonderful gift to us who I will always be thankful for...which sort of leads me on to my next two points.

This evening we visited the fair with William in town. We had a nice time walking around and even took William on a ride. What made the evening enjoyable was as we walked around William had a slight smile on his face the whole time. We're so used to walking round with mr grumpy face/mr nobody's home that it was lovely to take him out when he actually looked like he was enjoying himself. It made the whole experience much more enjoyable. And then I thought if it's so nice taking a vaguely happy William to the fair what must it be like to take an excited, able to go on the rides, regular child to the fair?!

Secondly, earlier today I was looking at William as he lay on our bed, again in a vaguely happy mood, and I thought isnt it amazing how much I love him despite the fact that he rarely does anything to make me love him. He sometimes offers us brilliant smiles and quirky laughs but a lot of the time he doesn't really do a lot, and in fact some days he does absolutely nothing. And yet I love him with all my heart. And then it made me think of God and how He loves us unconditionally, not because of anything we've done to earn that love, but because we are His children who He made. And for the first time today I saw that link and understood a bit how God's love for us works.

Generally other children dont play too much with William, hes pretty boring to be honest to them. A couple of weeks ago, however at play group, a little girl who has a bit of a soft spot for William spent a good half hour sitting with him showering him with kisses. She was so excited to be giving William kisses and it was really lovely to watch because it was a rare occasion where another child played with him. Such a small thing but I love it when it happens.

I think my ramblings seems a bit disjointed but I think I just wanted to get across that the things we take joy in over William are the things other people probably don't think about. The things that other families do all the time are rare special moments for us. Never take any good thing in your life for granted, never think you're entitled to it. If I can sit holding my fitting son who is crying at the intense spasms pulling his limbs in every which way and still feel thankful for him and his beautiful smile then I'm sure there's a lot most of us have to be very thankful for.

Wednesday 8th August

It's now been nearly two and a half months since William's surgery and still no sick! It really has made life a lot easier, a lot more flexible, a lot less washing and a lot less sick smelling.
We've recently started William on a new medicine to help dry up his secretions which has helped a little, he is dribbling less but still choking now and then on secretions, but he manages to clear it so it's no big problem. I mentioned last time that William had been sent home with a Farell Valve, well I got fed up of it and didnt think it was doing anything so agreed with some of our team to try William without it and he's been fine which is good and saves a lot of fuss.

A couple of weeks ago we went to Activ8 with William again. We had a great week and William was really good, especially as he can't be sick now! He went swimming twice and even managed to fall asleep in the pool. Here's a link to some of my photos from the week:

https://www.facebook.com/media/set/?set=a.10100483579147308.2655508.199702150&type=3&l=8dc32d171a. The children who come on the holiday really love to hang out with William. They ask lots of questions about him but aren't phased by anything, they just accept him as he is. The childen loved singing and playing with him and it was really lovely to see. Some of our friends joined the team this year and bought their two lovely girls. Their youngest, Charlotte, is just six weeks older than William and has always seemed to have a soft spot for him. While we were away she would often go over to him and stroke him or do 'round and round the garden' on his hand. One time she was pushing him in his buggy and William started whinging so she just stopped, walked round to him and started stroking his cheek, it was so lovely. Another time we were singing with the children and doing actions so I had William laid on the floor and was moving his arms to do the actions. Charlotte came over and just took over from me, moving Williams hands around and clapping them together. It was such a lovely moment and I absolutely love seeing other children engage with him. Often I find the yougest children are the most natural at interacting with him, it's a shame we lose some of that as we get older.

Chilling with Pheno

William also attended the dentist for the first time the other week. He has to attend the dentist at the hospital as they are used to dealing with similar children. It was just a check up but William managed to sleep through the whole appointment, despite the dentist having a look at all his teeth!

I find these days it's much harder to know what to write on the blog, hence posts being less frequent. When William was younger things changed quickly, we had a lot to get our heads round very quickly and it was pretty overwhelming but now things are much calmer. However I wanted to write about a book I just read. It was lent to me by Steve's mum and is the story of a family who had three children. The first was diagnosed with a brain tumour at only a few months old and given 2-6 months to live. She lived to be 12. Their second child had severe development delay and had the mental age of a 9 month old. Their third daughter was born 2 and a half months early but went on to be ok despite initial fears she might also be disabled in some way.

The book has a short chapter written by the dad at the beginning that I really related to so I've tweaked it a bit to be true for me. The book is called Hurting Hope, by Charles and Joanne Hewlett.

Sometimes being a mother isnt what it was meant to be.

I thought motherhood would mean helping my son take his first precious steps. Instead, it's taking him to clinic to be assessed for a specialist pushchair.

I thought it was mum's job to take those adorable, if embarassing, photos to show at his 21st birthday. Instead it's taking photos so that after he dies I won't forget what he looked like.

I pictured myself standing over my child's bed as he slept, thanking God for his precious life. Instead, I look out at him from a mind that is numb from questioning God: 'Why?'

I imagined going to school interviews to hear from the teacher how my child was progressing. Instead, I am discussing EEG results with the neurologist to see if there was any change in his fits.

I dreamt of the joy of watching my children grow into healthy adults. Instead, I worry about him getting bigger and how we'll manage to move him around.

I thought I would be arranging family holidays in the sun. Instead, I'm worried about travelling out of the county in case he suddenly falls ill.

I imagined being the coolest mum in the world when my children's friends came over to play. Insetad, I am explaining to other children why William doesn't play with them.

I thought motherhood meant being there for my son when he got older, helping him to make wise decisions in life. Instead, it's wondering where I'll find a private place to change his nappy when he's 10.

I thought motherhood was being at my son's wedding seeing him marry the woman of his dreams. Instead, it's beginning to put together in my mind an order of service for his funeral.

Sometimes, being a mother isn't what it was meant to be.

While this is so true, as I typed it out I realised how depressing it sounded. It made me realise how far I've come with my attitude towards William. When we first had him everything seemed hard and scary and life seemed to have much less to look forward to. I think over time two big things have changed. Firstly we've got to know William. We've got to know more of his personality, seen him develop in teeny tiny ways and fallen in love with his smile. Our love for him has grown so much that he feels every bit worth all the difficultness. Secondly, we've just got used to it. There are many many things we can't do that we wished we could but we just look for the things we can do. William will never learn to ride a bike but we're looking at ordering a special frame for his buggy so we can tow that behind a bike. We'll probably never be brave/stupid enough to take him on an airplane but we can holiday at Centre Parcs and still have fun. We might find it difficult to get out the house at times but it's those days where it's just me and him where he seems more comfortable and gives me the most smiles.

Of course there will always be sadnesses when we think of all the things he won't do and we wonder what he'd be like but William is William, he is who he is and he's so amazing. He has taught us so much and introduced us to so many wonderful people so what's the point in dwelling on what will never be. Take joy in the things you do have, don't miss out on them by dwelling on what you don't.

Monday 4th June 2012

I've been so rubbish at keeping the blog up-to-date in the last few months, but I'm trying to be better at it! So i've written a new blog post here and published one I wrote a while ago (below). So you might want to start with the previous post then come back to this one so you read them in chronoloigcal order!


Since I wrote the last post, things have changed a lot again!


The first thing is that William has finally had his operation! After the first failed attempt we were rescheduled to go in on 12th April. Unfortunately William came down with a chest infection a week and a half before the date and didn't pick up quickly enough to go for the operation. He was on IV antibiotics and IV fluids for a few days but thankfully it wasn't too serious and he didn't need any oxygen support. He was very miserable with it though!


After cancelling that date we were then given another date of 31st May (last Thursday). We were all prepared for the surgery again, expecting to be in hospital for at least a week. In my last post I wrote that I'd been struggling with some anxiety. Thankfully I have an amazing GP who's been sorting me out and I've been getting on a lot better in the last couple of months, getting out more and feeling more relaxed when out. On the day of the surgery we left home at 6.45am and although we were of course both quite anxious, over the course of the half hour journey to the hospital I became more and more unsettled. By the time we pulled up in the hospital car park I was experiencing what I can only presume was some sort of panic attack. It was horrible and I could not get a grip of myself enough to bring myself to get out the car. I was so anxious the operation would get cancelled last minute (particularly as we knew we were 4th on the surgery list) and I had an overwhelming fear that William wasn't going to survive the operation.


Steve called the ward we were expected on and explained the situation. They were very understanding and allowed Steve to drive me home. We then agreed Steve should return with William to the hospital in the hope the surgery would happen this time. I sat it out at home and my friend Rach came to occupy me for a bit. Steve went back to the hospital with his mum to keep him company. To our huge relief at 4:00pm they took William down to surgery as intensive care had spare beds this time! At half 5 I plucked up the courage to go back to the hospital with Steve's dad and we arrived on the ward at 6 to find Steve on his way to theatre recovery as they had bleeped him. We were quite worried why they were calling us so soon as we were expecting the operation to take 3-4 hours, rather than 2. However on arriving in recovery we met the surgeon who said the surgery had gone as well as it could have. It had been performed laparoscopically and they had managed to change Williams PEG to a button meaning he would need no further surgery to replace it in the future. We were so happy! We then had to wait 45 minutes while they tranferred him to intensive care to recover. We had not been able to see him at all up to this point so it was a scary wait. Eventually we were called up and amazingly William was already on HDU having not needed to be taken to PICU. He was already off his ventiliator with just an oxygen mask on his face and he was stirring. We were so happy that everything had gone so well, so relieved that this black cloud had gone, the surgery was over and William was ok!


We spent a total of 3 nights in hospital, much less than we expected to. It was still a difficult time as I was still getting mild feelings of panic (I think that hospital is just so big and overwhelming!). Thankfully I have an AMAZING husband who stayed at the hospital, was understanding of me and my crazyness and cared for William without once complaining. 


We are used to spending a lot of time in our local hospital where generally William is often one of the more complex patients. Being in a large specialist hopsital was a different story and we saw many babies sicker than William. One family sticks in our minds more than anyone else though, they were in HDU with us and about a week previous to our encounter their 10 month old beautiful little girl had been diagnosed with a cancerous brain tumour following 3 weeks of vomitting and then sudden onset seizures. They were still unsure whether it could be treated or how it would be treated. They were obviously in shock. You know when you see really poorly children and their families on TV and it's sad, well this was something else. They were real, normal people sharing our room, they could have been anyone. They could have been us, or someone we know. This weekend as the country has celebrated I've thought a lot about them, as their lives have been thrown into chaos. I don't know what my point is or why I wanted to talk about them, I guess I just wanted to say pray for them, think about them, and be forever happy when your children, family and friends are ok.


William is now back home and doing well. We've had no sickness yet since surgery! He still coughs a bit dramatically to try and clear his secretions but there's now less fear we're about to see all his lunch. One of the effects of the surgery is that William can no longer burp or bring wind up through his mouth. He is currently attached 24/7 to a Farrell Valve to vent air from his tummy. This is a bit of a pain, it's like being constantly attached to a drip which needs to be held above your head. Hopefully he'll be able to be weaned off this in the coming months but we're not sure it's helping much anyway!


I talked in my last blog about our experiences at play groups. Since I wrote that we have attended a couple of new 'special needs' playgroups. It's been a good experience and I've been able to meet another mum whose son has epilepsy. It's very different to William's epilepsy but it's still good to share stories. I still find that, apart from at the hospice playgroup we attend once a month, William is always the most disabled child there. I brought this up with William's consultant who said it's because his brain condition affects his whole brain, so he is effected a lot! He's not always the most medically complicated child (especially compared to many of the children at the hospice) but he is very disabled. Sometimes it's really difficult to be in that situation but I think think it's good to think about it in another way...William might be the most disabled but his brain is completely broken. How amazing is it then in light of that, that he smiles, that in his own way he recognises the voices of those he knows best and that he's starting to learn to roll to his right and is mighty proud of himself for it too! I think for someone with his brain that's mighty impressive.


A couple of weeks ago we were invited to attend Dreamnight at Colchester Zoo with the hospice. This is an event where the zoo opens from 6pm-9pm and invites only families from 5 local childrens hospices. We went along with Williams friend Freya and her lovely parents Natalie and Ben. We had a really lovely evening getting to see some animals really close up. For those not on facebook here's a link to the photos:

https://www.facebook.com/media/set/?set=a.10100435863385078.2642816.199702150&type=3&l=ee76ed9347. It was great to not feel like the odd one out, to wonder around and not feel like we were being looked at and to be there with so many families who understood what life is like with a child with a serious medical condition. Natalie and I spent the evening spotting different medical equipment that people had with them!

I've said enough for tonight, but have so much more I'll write about soon. Again, for those not on facebook here's some photos we took of William recently:

https://www.facebook.com/media/set/?set=a.10100435947995518.2642856.199702150&type=3&l=3054961387. Enjoy his beautiful smile!

Friday 23rd March

I wrote this blog back on the 23rd March (it's now the 4th June) but never published it. When I wrote it I was angry so wouldn't let myself publish it, so I've now sensored it and published it!

Now we've finally moved house and got the internet up and running I thought it was about time I updated the blog as so much has happened in the last 2 months.

Last time I wrote I said that William had started being very sick again. This didn't stop and since then we could count on one hand the number of days he's not been sick. It's been up and down, some days he throws up one feed, some days he throws up over half of what we give him. This has resulted in a lot of worry about his fluid intake. Eventually after a fair amount of nagging from me we got a referral to Addenbrookes to see the surgeon about William having a Nissens Fundoplication. If the operation was a success it would stop him being sick and mean he could come off his reflux medicines. We'd be able to feed him quicker and move around freely with him while he was feeding.

We met with the surgeon a few weeks ago who was a bit reluctant to operate given William's other medical problems but he eventually agreed following a little exagerating from me. This particular meeting did not go very well, mostly because the surgeon doesn't have a very good bedside manner. He wanted us to see an intensive care respiratory doctor before he would agree to operate. Therefore a couple of weeks ago we met with another doctor at Addenbrookes who was lovely and had worked with children like William a lot. He said given Williams medical conditions, his chest was in good shape and he thought the operation was worth carrying out. He said he thought William had a 95% chance of coming off the ventilators straight away after surgery, and only a 1-2% chance of needing ventilating for a week or more. He explained that once a child has had to stay on a ventilator for a week and is showing no signs of taking over their breathing again, that is when you would start to look at other options. This would range from turning off the ventilator and acknowledging there's nothing more that can be done, giving the child a tracheostomy or trying to agressively wean them off the ventilator. Thankfully there was a slim chance we would reach this situation so we were still happy to proceed.

Out of the blue a week last Wednesday we were told we had a slot for surgery last Monday, it was a cancellation, hence the short notice. We were nervous but so pleased it had come through. Since January we've barely left the house and it was so good to think we might finally get our lives back. On monday we arrived at Addenbrookes at 7.20am with all our bags ready for a week or so there. We were seen by the anaesthetist, surgeons registrar and William had blood taken so they could confirm his blood type in case he needed a transfusion during the operation. We then waited as we were third on the list. At 3pm a junior doctor came to inform us that the intensive care bed reserved for when William came out of theatre had gone (presumably due to an emergency) and the surgeon could threfore not operate. We went home very upset. Having spent the last few days as nervous wrecks the prospect of going through it all again was awful. We are currently waiting for a new surgery date. This morning Steve spoke to the surgeons secretary who advised we're currently booked in for early May. However there may be another cancellation slot coming up so we're waiting to hear back from her again.

While all this has been unpleasant in itself the knock on effects have been unexpected and probably the worst part. As a result of his sickness we've not been able to do much with William. We put off seeing the physio for a while as we simply couldnt afford to move him. We have little freedom with what we do with him because our whole day is based around feeding and then sitting still to make sure he's not sick. While William is showing little signs of becoming more aware in his responses, physically he's making no progress.

As I mentioned earlier we've not been able to go out much this year. Not only is it a big hassle if William is sick while out and about, it's also embarassing because he literally seems to be choking, but more than anything our priority has to be to keep as much water and food in him as possible to keep him well. Most the time keeping him still is the best way to achieve this so we can't afford to move him. So you can imagine, when you spend most your time stuck inside with a baby who sicks up most of what you give them, when you start every day cleaning a lot of sick out of a cot, when you can't play with that baby as you want to, when you barely see anyone, life gets very challening. In the past several weeks I've started struggling a lot with anxiety type feelings to the point that I'm finding it really hard to go out. Steve has to come home and deal with an often very fed up Helen.

On top of this we've had struggles with church and moved house and it's all made for a difficult few months. However there have been a couple of really good things going on too...

I have a friend from university, Rachel, who lives about half an hour away and she has been such a star over the last few months that I don't know what I'd have done without her. When William was born she explained to her boss about William and us and he/she agreed that Rachel could take every Tuesday afternoon off to come and see us. This is when William has respite so we often just sit and chat or go for a drink. She often cooks us dinner when shes here and most of all she comes even when I feel like rubbish and don't want to do anything and she doesn't mind. I'm so thankful for her and for her being there when we felt very alone and for sticking with us even when we're not very fun people to be around.

We've also made friends with a local couple who have a daughter with a diagnosis very different to William's but who is also tube fed. As families we've faced a lot of very similar things and it's been really great to meet a family who we get on with but can also share our experiences with. William and their little girl are so adorable together and it's really nice for William to have a friend more on his ability level. We've been able to share experiences and help each other out, and I am so grateful we have met.

Finally, I wanted to write about what prompted me to write on here today. This morning William and I went to the 'special needs' toddler group we go to most Fridays. I decided to walk there. This might sound like no big deal but for someone who doesn't go out much, whose baby is likely to projectile vomit at any moment and who is struggling with anxiety type feelings, it felt like a big achievement and I was proud of myself. The group starts with an hours free play, then snack time, then a circle time with singing. 90% of the time when we go William falls asleep during snack time and misses the singing because he's worn out and because he often naps around then. A few weeks ago a few comments were made about trying to help William stay awake for the whole session and then this morning it was suggested that perhaps I take William along later in the hope that he would have less stimulation before he got there and would then be awake for circle time. The ladies who lead the group who suggested it were trying to help and work out a solution that would be best for William and I totally realise this and am not angry at them. However the conversation ended up having a totally different effect on me.

William sleeps generally well at night so long as hes not sick or fitting, however he naps as and when he wants in the day. I've spent a long time worrying about him not being in a better routine with his naps but have come to the conclusion that there is too much against us to have more of a routine and he sleeps well at night which is enough. Many families with children with additional needs struggle to ever get a decent nights sleep. His sleepiness will depend on his seizure activty, his medicines and how active he's been in the day which depends largely on how sick he's been. His bedtime varies due to his sickness, but you could put him to bed at 6 and he'll go stright asleep, or you could put him to bed at 6 and he'll lie happily awake for four hours. How is a child with severe neurological problems supposed to understand rules about when to sleep and when not to when many healthy children sturggle with it. Despite all this reasoning I still feel like a bad mother for not having my child in a structured sleep routine. Therefore when comments like today's are made I find it hard not to take it personally.

Add to this the fact that I'm struggling with the fact that William is obvisouly the least able, most severely disabled child in the group and the fact that the group is the only thing I regularly attend, I was left feeling very excluded. I go to that group mostly for me, Williams barely aware where we are but I need to do something. As much as I know they did nothing wrong and were just trying to help, I can't help but feel like I'm being excluded from something which should be for people like us. It's like William is too disabled to be involved. I know this isnt the case at all though.

Wednesday 18th January

William came out of hospital last Friday. The changes in his drugs seems to have done the trick for now and his fits are back to normal. He had a good weekend but then yesterday he seemed to be coming down with something else. He's been waking up in the night being sick, crying when he coughs (so we think his throat hurts) and being regularly sick. He's currently having his feeds very slow on account of him being sicky, so having just spent the last hour and a half feeding him he has just out of nowhere projectiled all of it back out so we're back onto the dioralite for a bit.

We're pretty much house bound again at the moment, until his sick calms down and this sore throat thing goes. Tomorrow he has his vaccines scheduled in. This is now our third attempt at getting his jabs as the last two times we were meant to go he was poorly/in hospital. Hopefully he'll keep his temperature down over night or we'll have to cancel again.

In all honesty life feels like a load of crap at the moment.

Thursday 12th January

Just a quick update whilst we're home collecting changes of clothes.

William has been in hospital since Monday. We took him in initially first thing on Saturday morning after being up half the night with him. He had a bit of a temperature and was feverish but was fitting a lot. They checked him over and gave him antibiotics and we went home. However he continued to fit a lot all weekend and on Sunday night we decided to give him Midazolam (his emergency rescue medicine). By Monday his temperature was fine but he was still fitting a lot. By lunch time he had begun doing some quite violent tonic clonic seizures which in hindsight I think were making him reflux and he was going purple as a result because he couldn't breathe. I called the hospital and they said to call an ambulance. The paramedics were lovely and took us in to Holly Ward. They were really reassuring and said they'd probably see us again which I thought was a nice thing to say because it put me at ease about calling them. (I really hate calling for an ambulance because I don't want to be over worried!)

At the hospital he settled down after being given a different medicine (Clobozam) and we waited to see his consultant on Tuesday morning. He seemed well on Tuesday morning but then late morning had a series of bad fits again where he was going purple. He continued to have fits throughout the day but not so severe ones. Wednesday morning he did the same again and had another bad spell which was thankfully seen by his doctor. She decided to give him another dose of Midazolam which knocked him out for the rest of the afternoon. In the evening he was in really good spirits but then by 8 he'd started fitting again. Thankfully our doctor popped into see us before she left for the day and decided he needed another dose of Midazolam which she gave. She then left for the evening leaving instructions with the registrar that should he have another run of bad fits before 7 he would need to be given Phenytoin (another new drug to us) through an IV line. Thankfully he was ok through the night though. Today he has had several clusters of fits but none too severe that he's needed intervention. He has been taken back off the clobozam as it wasn't making a difference and his regular phenobarb dose has been increased as of last night.

Today we were able to see the doctor from Addenbrookes who sees William from time to time. He happened to be at the hospital for clinics and came up to see William with William's regular doctor. He has decided to start William on another new drug - Topiramate. This will probably be started today. It is hoped that this drug can be introduced and then the phenobarb will eventually be weaned away but I told the doctor I'd be very impressed if he got William off it as its the only thing that works really well for him. Should this new drug not help William will be referred to Addenbrookes to go on to the Ketogenic diet but this won't be yet hopefully. We really are starting to run out of drugs now.

I quizzed the doctor on what would happen if they couldn't bring William's fits under control and she said we were still a way off that as we still had other options to try. However when we reach that point we would simply have to manage as best we could and use drugs such as morphine to keep William comfortable. I really hope it never comes to that as I think this would be a long drawn out hideous ordeal to go through for all of us.

It's been a really hard few days, not least because I'm spending my second birthday in a row in hospital. It's a very uncertain time and the hospital is a boring place much of the time, I feel like my brain is dying!

William remains a trooper often smiling as he comes out of a fit, while his doctor and I despair at him! It's such a battle of emotions, once minute hes struggling to breathe, choking while fitting so hard his whole body is jumping on the bed, then the next he's happy as larry. One minute we're thinking how much more of this can we all take and the next we're desperate to have many many more days of happy William smiles. It's really hard. There is one particular doctor and one particular nurse who have been amazing at the hospital and we are so thankful for them.

That's all for now. We're heading back to the hospital again now to relieve Nana of her baby-sitting duties.