Christmas posts

Below I've added two new blog posts. The bottom one is a general update and the top one is some christmas themed ramblings.
Happy Christmas!

Helen's Christmas Address!

Every now and then I feel the need to write something a bit more thinky on the blog so here's my Christmas edition of Helen's latest musings.

I don't know about you but being this time of year we've received quite a few family Christmas newsletters over the last few weeks. My parents never did this sort of thing when I was little so I always thought it was an odd tradition. Although I enjoy reading everyone elses letters I always think no one would be interested in what we've been up to this year so have never bothered to write one. But then as I thought about it I realised that this blog is in someways a year round version of one of those letters. And then as I thought about it a bit more I thought facebook is like another version of the same thing - letting everyone know what you've been up to just on an even more regular basis.

I've also realised that family newsletters come in all sorts of styles; some are funny, some are serious, some are long, some are short, etc. Sometimes you get one and it seems like the family has had the most amazing year and each family member has accomplished an insane amount of life goals, and you're left feeling a bit miserable at the sorry state of your comparitvely boring life. This then got me thinking back to a conversation I had a while ago with a rather wise friend (Mr Wells)! I was saying how some people seem to go through life (or at least phases of life) when they just get a load of bad luck. I'm sure most people can think of someone they know who always seems to have rubbish stuff happening to them repeatedly. On the other hand there's probably someone you know that seems to have it all and has a great life.

Well I once heard someone say that in a person's life they will inevitably go through good things and bad things, but those things won't be in a regular cycle. It won't happen that in January something really bad happens, but then February is a great month, then March is bad, while April is good etc etc. Good and bad events will happen in a random sequence, so at some point someone will probably have a string of rubbish things happen while someone else will have a string of good things happen. However, what my friend and I discussed was that there's also a big role  in how a person describes what's going on in their lives in the impression it gives to those around them on the quality of their life. This is often true with things like facebook, people can be as selective as they like about what goes on there in order to control the impression people have of their lives. You can just choose to write about the good stuff and put photos up of the exciting things you've done, thus giving your friends the impression that your life is full of great stuff.

Here I've written two brief accounts of our past year. They're both true but very different ways of putting things...

1) This year has been a really difficult one and we've faced many challenges. William's fits have on many occasions become out of control. He has caught many colds, suffered a chest infection and an acute life threatening episode back in May. He has had to change doctors, spent many nights in hospital and had more appointments than you could believe. He has grown so heavy and still has no control over his head so is really heavy to carry around. We now have to have lots of bulky equipment for him in the house. On top of this we are having to move out of the house we bought less than two years ago which we love. We have worked so hard on the house and because of William's disability we are being forced to sell it to buy a new house with no character. William's development is very slow and he still can't really do anything and earlier this year he was diagnosed as being cortically blind. Tango has become suddenly very old and is needing expensive medicine to treat arthritus. Our fridge freezer has packed in a couple of times, Steve's car needed new brakes, Helen has a sore rash on her arm that no one can diagnose, William has had several severe bouts of nappy rash and the next door neighbour still insists on calling Steve Chris.

2) This past year has had many highlights as we've enjoyed watching William grow. We were so happy to celebrate his first birthday which was a really special day. William has become more smiley and has the most beautfiul smile ever and he loves showing off his eight little teeth. While his movement and vision aren't the best he seems to be looking at our faces more and has more of an awareness of Steve and I. He likes to be cuddled when he's sleepy. He loves his nana's singing and playing with all his amazing new toys. He has made several new friends this year, including a little girl who is also tube fed. While his consultant is on leave we've been very fortunate with the doctor covering him as she is really lovely and approachable. Whilst he has spent his fair share of time in hospital, we've got to know all the staff on the ward much better and we now feel much more relaxed being there and enjoy talking with the nurses. We're so blessed to have the input we have from a wide range of people including a physiotherapist, occupational therapist, speech and language therapist, visual impairment teacher, health visitor, community nurses and doctor and soon we will have a portage worker. We are so impressed with all the amazing equipment provided through the NHS which we otherwise couldn't afford including specialist seating, bath support and bed. We are now looking forward to moving house in the new year as the new house will be much better suited to us as a family and to William as he grows older. We exchanged on the house this week just in time for Christmas! We've been able to pick the kitchen and some of the decor in the new house and can't wait to get in now to start making it our home. Tango turned 13 this year and still enjoys running and chasing sticks while Max is still as cheeky and cuddly as ever. We are grateful to have Steve's parents living close by who help us with lots of things, including dog walking.

So anyway, if you're one of those people (like me) who gets depressed looking on facebook at how great everyone else's lives seem, or read everyone's christmas newsletters and think 'wow my family is so boring compared to them' then remember things aren't always as they first seem.

On a final note, after reading all of this year's newsletters and of the accomplishments achieved by everyone it made me think about the things we value in life. This year there have been a couple of occasions where we thought we might lose people, and although everything turned out fine in the end we remember how things could have been so different. So although we'll never write in our Christmas newsletter that William learnt to walk, or write, or spell, or ride his bike this year, so long as William is still here and giving us the most amazing smiles in the world, so amazing they make you cry with happiness, then that's all that matters.

Happy Christmas and a Happy New Year, love from the Carlsons xxx

Tuesday 20th December 2011

Thought I should do a quick update before Christmas because I know a few people are keen for one! Since I last wrote William has been fairly up and down. After coming out of hospital last time he proceeded to get about five colds in a row. This meant for about 7 weeks he was sick at least once a day despite us feeding him much slower than usual. Don't get me wrong, when I say sick I mean sick. I've met many parents who say my child is sick a lot and then the child proceeds to dribble a bit of milk down their chin! When William is sick we get a whole feed of 150ml half digested lumpy milk which he first chokes on rather dramatically then projectiles out of his mouth. We reached a point where we got pretty fed up of all the sick and were worried about him continuously not getting the fluid he needed. He also kept spiking temperatures so I rang the community nurses who popped out to see him. They talked to the ward doctors about him who asked to review him on the ward. Turned out he had tonsillitis so they put him on antibiotics and after a week or two he was much better. He is being much less sick now but we're still having to feed him slowly so he spends at least half his waking day attached to the feeding pump.

In the midst of all these colds he's had a couple of bad spells with his seizures. At the time, in hindsight, when he probably was coming down with the tonsillitis his focal seizures (where he blinks rapidly) increased and at times he was having them every couple of minutes over a few hours. We were in discussions with his paediatrician about giving him a short course of a new medicine (to us) - Clobozam. We have this at home ready to use but she left the decision with us. We decided to sit it out a bit longer and within a few days he'd sorted himself back out. A couple of weeks later he had a spell of bad days where his spasms and tonic clonic seizures flared up. Again he'd have a couple of hours each day where they were really bad but he gradually came out of that too. At the moment he's fairly settled although I think he was a bit wheezy this morning and his temp was up again a bit so we'll see. Hopefully there's nothing else brewing, at least for another week or two!

Following on the from all the sick we had a good chat with his doctor about the possibility of him having a nissen fundoplication, where they tighten up the entrance to your stomach to stop sick coming back out, but the doctor wasn't sure it would help William as we think his sick is cough induced. However earlier this week we met William's community paediatrician for the first time and she was much more optimistic about the operation and thought it might help him so we'll see what happens. The community paed is a doctor based more in the community who will coordinate the services William receives such as his physio, OT and speech and language therapist. She will also get involved later when he starts nursery in ensuring they are equipped for him. She will also take more of a role in overseeing William's general development and health, whereas his epilepsy will remain with the neurologists at the hospital as it's so severe. She had a good look at him on Monday and was a little bit concerned she couldn't locate two certain parts of his body (ones that only boys have!). She'll keep an eye on him and check him again next time we see her but this could mean him having an operation in the future as it increases your risk of getting cancer if not acted upon, hopefully though this won't be necessary and they were just hiding!

Despite all these goings on medically William has been super busy. We celebrated his birthday just over a month ago with a jungle themed party with some of his nearest and dearest at our house. It was a lovely day and William was relatively in good spirits considering he'd been ill. He had much fun playing 'bounce the balloon off my head' with great aunty Jan in the morning! He received so many lovely presents and we were really touched at how many people sent him something. We made a little video of him playing with his birthday toys to send out with his thank yous, but I thought I'd share it on here too. Click here - http://www.youtube.com/watch?v=X9ZLGxf6TzU
William has been really busy over the Christmas period so far. Firstly we were given tickets by the children's ward play worker to visit a local Christmas attraction. William was able to take a train ride to meet Santa and his reindeer and alpaca, ride on a 1920's merry-go-round and browse the craft stalls! Later that week we attended the hospice Christmas party where William met Santa again and got another present off him! The party was brilliant and it was a real privilege to be a part of it. This week William went to the Holly ward Christmas party, where yet again he met Santa! It was really lovely to go to a party with lots of his friends and some of his respite nurses and community nurses were there too. You can see the photos here: https://www.facebook.com/media/set/?set=a.10100242427332478.2608514.199702150&type=1&l=89a00be157

In other news, William has made a few new friends recently at his play group and at the hospital. His new chair is now here and in action. We are in the process of ordering him a specialist bed ready for the new house. The physio is in the process of ordering him a standing frame. I have been to visit another family's adapted home and was blown away by how lovely it was. We have exchanged contracts on our house and will be moving hopefully at the end of Feb once our new house has been finished.

That's a quick run down of life at the moment :-)

Birthdays, sensory rooms, videos and hospitals

According to helen's season calendar, we're not even officially in winter yet and William has already had his second hospital admission because of a cold! Last week he spent another three nights on the ward after getting a cold which then made him throw up all his fluids no matter what we tried and develop another wheeze. After trying to sit it out at home we became worried that he was becoming dehydrated so took him in to be checked over. They put him on slow continuous feeds and he seemed to cope better with that. He needed to be on oxygen and have nebulisers for a few days but soon picked up again. He's been continuing to recover at home. Unfortunately last night he started throwing everything back up again but we've reverted back to slow continuous feeding and he's kept it in today thankfully so hopefully we'll be ok! Everytime we stay in hospital we pick up some more little tips of things to try if he's unwell. We're very grateful for feeding pumps!

One of the most amazing things about being in hospital with a wheeze is they gave him a short small course of steroids which act as an anti-inflamatory. These are given in general to treat chest problems I think. Anyway, the steroids he had were the same ones he had back in April to try and stop some of his fits. Anyway as a result of having a short course of steroids William had a fit free week! (Or at least we didn't see any fits, I'm sure there's always plenty going on beneath the surface!) This was a little miracle for us because he'd been waking up upset pretty much every night for a few months having a fit. It's been a good break for him and us but they're gradually coming back now.

While we were in hospital last week we were able to visist the sensory room. Here are some pictures and a video of William enjoying the room:

http://www.facebook.com/media/set/?set=a.10100194544589878.2601089.199702150&type=1&l=b15108edc8

 

 

In general William has been on good form recently. He spends more time awake than before and is developing more personality. He laughs and smiles lots but also is starting to let us know more when he's not feeling very happy. He's showing signs of becoming more aware of us and us playing with him. Here's a little video I captured recently of him enjoying being in his chair for once!

 

On a final note, I've been asked by a few people recently what William would like for his upcoming birthday! We're very excited here about his birthday as it's such a milestone for him, every birthday we make it to is a big celebration! Sadly a lot of toys are a bit useless to William as he can't really interact with things on his own and needs toys to interect with him more! We're very grateful for any presents Williams receives but think it would be better to get things that he can make use of! I have therefore started putting together a little list of things that we'd like for William that those who wish to get something can refer to! Many of the items are ones we've seen at the hospice or baby group we go to so I know they'll work for him. While there are many smaller items that would be great for him, we'd also like to save up towards a big bubble tube like the one in the photos and video above. These are not cheap pieces of equipment because they're specialist but we think it's be a really lovely thing for William to have in his bedroom. Over time we'd like to save up for different sensory lights and make his bedroom into his own little sensory room!

 

Anyway, the list we've set up can be found here: http://william.wouldlovethis.com/. I hope it's easy to use. The way it works is you can pick a product you like and then 'promise' to get it. You then need to follow the link to the website to actully buy it. You can also see that we've put a bubble tube on the list so instead of buying the whole thing you can promise to contribute towards it.

 

Oh and one more thing...we are moving house! We now have a buyer for our house and have had an offer accepted on the house we want to buy. While it's very hard to be leaving the house we love and have worked so hard on we also know it's not the right house for William and he is our priority. The new house has a drive, 4 bedrooms (so we will hopefully never outgrow it), a big room for William so we can have specialist equipment in it, a family bathroom that we can extend and adapt, a wider hallway and easier access into the house. It's still being built so we'll get a say in some of the final decor choices which is nice. It's a big scary thing and it's been very hard coming to this decision so we'd appreciate prayer that it will go through smoothly and that we'll have peace about it all. We are excited though to be hopefully getting a house that will work for William and that will make all our lives much easier once the adaptations have been carried out.

Tuesday 11th October

Thought it was about time that I did another update. So many things have been happening recently so I'm not sure where to start!

William has recently had his referral done for Early Years Support which has meant lots more people getting involved. This has meant lots and lots of appointments and it's not unusual to have an appointment every day in a week. We now see a Physiotherapist, Occupational Therapist, Speech and Language Therapist and Visual Impairment Service and we are shortly to start seeing Portage. They're all really lovely people and offer us loads of invaluable advice but sometimes it can be a lot of information to take on board! William still has weekly respite in the home provided by a couple of lovely carers based at the hospital who come for an afternoon per week and an evening per month. When we need them we also have the consultant at the hospital, the community nurses, the health visitor, the GP, the dietician and we're soon to meet the symptom management true colours nurse so there's a lot going on! We're so blessed though that each and every person involved is absolutely lovely!

In general William's been doing really well recently. He had a few nights in hospital a couple of weeks ago when he picked up a virus and needed some help with his oxygen. Here's a little photo of him with his little teddies! Colds and viruses really knock him out for a good couple of weeks but he seems much better now. His fits have been manageable recently. He still has spasms several times a day which really upset him and he now wakes up every night with them. His other fits seem to come and go. He might have a bad few days with lots of little fits then they might stop again for a few weeks. I mentioned in my last post about a new type of fit he'd had and he has had a few more of these so I filmed one and showed it to his doctor at the hospital who confirmed it looked like a tonic clonic seizure. Last week he had his first proper serious tonic clonic but thankfully it only lasted about 2 mins so I didn't need to give him his midazolam. It was very scary though and we have to keep a close eye on him with these as if they last longer than ten minutes he will need treating. On a positive note he's not had his phenobarb dose increased still since June so that's good.

William spent his first couple of nights at the hospice last weekend. They called on Thursday to say there had been a cancellation so he went in on Friday afternoon till Sunday afternoon. We went to visit him on Saturday and found him laughing away with his carer so we felt reassured that he was ok. When we took him in on the Friday he seemed a bit under the weather, he'd been really sick as we left the house and had been having quite a lot of small fits which were making him go a bit blue. However the hospice is well prepared for children like William because that's what they do so they were fine with him! He gets his own carer while he's there and they keep lots of notes on how he's been. He was able to play with his feet in shaving foam, play in the sand and have lots of stories read. He really seemed to enjoy it. We missed him a lot but also really appreciated being able to switch off from the William routine! There's that saying, 'you don't know what you've got till it's gone', well being without William really made me realise how much a part of our life he is now, it didn't feel right walking the dogs without him. It made me realise how much we'll miss him when he's not here anymore except then he won't be down the road so we can't pop in so it makes me want to be more thankful for every moment we have! When William is unwell and his fits flare up you daren't really take your eyes off him for fear you might pop out the room and return to find him blue with a fit or choking on mucus so getting on with life is a bit tricky. We literally spend most of our lives with the worry at the back of our minds of what he's doing, is he having a fit, will it end soon, is he the right colour, is he going to be sick etc, so to not have to constantly be worrying about those things was a huge relief!

One of the other major things going on at the moment is discussion over our house and adapting it to be suitable for William as he grows more. He's already big for his age and as he doesn't support his weight at all he feels even heavier than he is. Our OT has advised that we need to start planning ahead and thinking what adaptations we will need. This will probably involve installing a through floor lift and a wet room for William, ensuring he has a bedroom big enough for his specialist bed, making sure we have easy access into the house for a wheelchair etc. After much discussion we don't feel our house is the best house in which to make these changes, we don't have a drive which would make it especially difficult if we ever got a wheelchair accessible car and and if we were able to go on and have other children we'd quickly run out of room and we don't want to have the adaptations carried out twice if we don't have to because its not an easy process. We have therefore discussed with the OT about moving house and have started getting valuations on our house and looking round a couple of others. We need to sell our house for as much as possible to buy a house with as much room as possible and potentially have money left to extend if needed. It's a really tough decision because we love our house and have only been here a short time and our families have helped us renovate it all but we need to do what's best for William (and our backs!). We had a very disappointing valuation yesterday but had another one today which was much more in line with our expectations. We obviously have very specific requirements but also want to stay near where we are now so we can easily walk to town as getting William in and out the car is not the easiest. Anyway we'd appreciate lots of prayer about this because we don't know what to do, what to potentially buy etc.

I think that's all for now. I said I'd write about the book I was reading but don't have time now. But to summarise I finished it and it was very sad and I cried a lot and became totally terrified about what we were still to face but have now put it out my mind and given the book to Nana G to read!

P.S. William now has 6 lovely (if not very gappy) teeth! Unfortunately one of these is chipped - we're pretty sure as a result of hitting it with another tooth during a fit so he often makes his tongue and gum bleed during a fit but it doesn't seem to bother him any more. We're waiting for a referral to the specialist dentist at the hospital.

P.P.S. William has recorded some special videos for you all and one for his nana and grandpa as they are away....

Happy William

Bedtime laughs

William's new trick is to go to bed and, despite the fact that he's exhausted because he's barely napped all day, he wakes up as soon as we put him down and spends the next hour or so laughing. Tonight he's been particularly funny. He started the evening been really miserable, in fact he was pretty much crying which he never usually does. We think his teeth are hurting him. We put him to bed and he was whinging then laughing then whinging then laughing. After a little while we heard him be sick so we went upstairs to change him and gave him some calpol to settle him. However, either the calpol contains something a bit special or someone felt better after being sick because, he has since proceeded to laugh his little head off in his weird William squarky way. We sat with him on our bed and read him a bedtime story (Will, God's Mighty Warrier!) but he just laughed all through it. I've uploaded a little video! He's now back in bed and still laughing. This all made for a lovely end to the day, we love to see him laugh even if it is when he should be sleeping.

In general today he's been pretty dopey and serious then this afternoon he was having quite a bad spasm type fit when in between spasms he started jerking repeatedly with his whole body. Our instant reaction was that he was having what more people think a fit should look like - a seizure where your whole body convulses. We're not sure if he's old enough to have this type of fit yet but that's certainly what it looked like. It was not nice to watch at all but he wasn't too bothered by it. It left me feeling a bit unsettled. I don't like it when  new things start because you don't really know what's going on. I described it to Steve as when you meet a new dog you've obviously a bit cautious around it because you don't really know what its like and over time you get to know the dog and build a trust with it until you reach the point as you do with your own dogs when you trust them and are totally relaxed with them. Although we're never totally relaxed about any of William's bad things (fits etc.) we do get used to them and learn what is something to worry about and what isn't, we know the patterns to his fits and behaviour, we know the difference between a cough and an I'm about to be sick cough etc. We'll just have to see what happens and if he was more of these fits. At least we've ended to day on a high!

This week the nurses came to look after William one afternoon and I was able to go and visit a friend in her new house. We also had our monthly evening baby sitting session last night so Steve and I were able to go out for an early anniversary meal. We had the nurses from 6-10 so we'd booked the table for 7. We'd finished shortly after 8 and weren't sure what to do with oursevles! We're not very good at hanging around in restaurants, we often scoff and off. (When we travelled America two years ago it was not unusal for us to eat out and be in and out within 30 mins!). We decided to go and relax in a local bar (which is something we never ever do!). It was good to have an evening off!

I've started reading a book recently that i ordered off the internet that another mother wrote about her life with a child with the same condition as William. Her daughter died when she was about 6 or 7 I think. I'm nearly half way through and so far there's a lot I don't like about it! I'll write a review though when I'm done! I've read a few books since having William written by other mums with children with a range of disabilites and I've not liked any of them! More of that when I've finished this book though!

Finally an update!

Since it's been 43 days (apparently :-P) since I last updated the blog I thought I better get round to it again!

Since we last wrote Activ8 has been and gone. It was a really great week with a really great team. Health wise William was pretty good for the whole week. He started being a bit sick half way through the week because he'd caught a cold, and in typical William style he had a cold and was sicky for about three weeks on and off after Activ8 but it could have been much worse. On Activ8 William went swimming for the first time and had his face painted! Here's a couple of pics:

If you're not on facebook here's a link so you can see some other photos of William from Activ8:

http://www.facebook.com/media/set/?set=a.10100138105374518.2582851.199702150&l=f945fe7844&type=1.

Since Activ8 we've been pretty busy decorating the house some more and preparing for William's dedication which was last weekend. We had a really lovely day and were so happy that so many family and friends were able to come and join us for the afternoon. It was a joint service with two other babies so there were lots of people there and we had a big BBQ afterwards together.

Since William's three week spell in hospital at the end of May/start of June he's been doing generally really well. He started on a new medicine for his fits at that time called Keppra which might be helping a bit. He's also putting weight on at a slower rate now he's a bit older so is probably outgrowing his dose slower. His fits have been very few and far between since the start of June until this week. He's started having some fits where he goes a bit grey/blue which aren't fun but today seems to have been a better day so far so hopefully it's just another blip. He had a day a couple of weeks ago where he had a few fits and by the next day they'd stopped so hopefully they'll just sort themselves out again. I've only seen him have one so far today so we'll see. He is still having spasms regularly but in general they don't upset him too much so we're not really bothered by them.

He still struggles quite a bit with colds and seems to catch everything that goes around. When he does get a cold, because he struggles to clear the rubbish, they usually last at least a week and make him quite sick. Following his three week cold after Activ8 we agreed with the dietician to put him onto a higher calorie milk which means he now has less milk. This means we can usually keep him on 4 feeds per day and he only needs 150ml per feed. He does need additional water now but that's much easier to give him.

I can't remember if I mentioned before but William was referred to the continuing care nursing team at the hospital and has been awarded 5 hours per week nursing care in the home. We've now started using this and have an afternoon a week and an evening a month where someone comes in and cares for William so we can go out or get on with something else. At the moment we're still getting used to it and the carers are still getting used to William but I know over time it's going to be a great thing.

William now sees the physiotherapist most weeks so we have lots of exercises and activities to be doing. Last week he went back to the eye clinic for another check up. They were able to point out some positives but in general it's still obvious he's not using his eyes properly. Sometimes his eyes do react to things but not in the way you'd expect. He still doesn't look at people or toys if you wave them in front of him. It's not clear whether over time his brain will get better at interpreting what his eyes are seeing.

We are still waiting to hear back from the genetics people. We finally got a letter a few weeks ago asking for our permission for them to get William's stored blood out of storage so they can do some gene testing. Apparently there's some new technology allowing them to spot very tiny errors in the genes so they're going to be using this new technology to study William's genes. We've no idea how much longer it'll be until we get any results that mean anything to us. It's starting to get more difficult now waiting to hear. When we first had William having any more children was the last thing on our minds because we were completely over whelmed with looking after him. Now we're starting to think a bit more ahead it's becoming hard not knowing what the future holds. Because we've been told that William's condition was most likely the result of a one off change in a gene, in the back of our minds we're thinking it'll all be ok but every now and then we think what if it's not! We still have little knowledge of the options available to us if it's found that we are both carriers of William's condition so it's all a bit of a big abyss at the moment.

Appart from the fact that we've been busy with Activ8 and the dedication, I think the main reason we've not updated the blog is because William's been ok. When he's ok we can have something of a normal life and I therefore don't spend my whole life musing about the point of life! We're not all separated by hospital stays, we can take him out and about and we can usually leave him with someone that knows him well and not worry too much! This week I've really felt the difference between when William is ok and when hes not so good. When the fits which affect his breathing start back up it's very difficult to do anything and normal life goes a bit out the window. Thankfully we've avoided hospital so far but leaving with William with someone else seems out the question. Partly because most people wouldn't dare to look after him and mostly because I wouldn't feel comfortable leaving him with someone who doesn't know him as well as I do. His fits are often very subtle at least to begin with so I don't really trust anyone other than Steve or I to spot them all the time! We're obviously so used to seeing him that we can spot the tiniest changes in his breathing pattern or in his tone so we know when something isn't quite right. After his stop breathing episode back in May I'm very nervous to take him out anywhere when he's having these fits in case he pulls another stunt like that. It also feels like a really odd situation to be in - you have a baby who might have a couple of episodes per hour where he isn't breathing properly. This is not a situation most people would be in in a typical day so knowing how to act is a bit difficult. In a way in feels wrong to be out and about with him as if everything's normal when he's doing something that extreme but some days that is just 'normal' for William. It's a really weird sitatuion to be in. I guess there are other medical conditions where you might have a similar feeling. Getting on with normal life when you have a condition that is life threatening is a weird idea really. You feel like you should get on with life because otherwise you'll never do anything but you can't pretend everything's normal because it's not. I just find it a weird situation to be in when William is having that type of fits.

The other thing I've really noticed recently is about how much I want a holiday! Have you ever noticed how if you can't have something then it often makes you want it more? Well I'm not the sort of person that's used to a yearly holiday abroad or anything like that but this year I have been desperate for a holiday in the sun! Usually I'm not that fussed about travelling but I've been itching to go somewhere and I think it's because I know I can't! Taking William out of the country would be a logisitcal nightmare, I dread to think how much his travel insurance would be, how we'd get all his medical stuff through an airport and what we'd do if anything went wrong while we were away! When he's doing ok I start to plan how I could pull it off - I could get the consultant to write a letter detailing his condition and get it translated into the langauge of where I'm travelling to and if he started to have fits we could come home early etc. but then he has a bad day and I think 'there's no way we could do it!'. It's time like this I really wish someone would hurry up and invent teleporting! That would make a holiday in Spain easy peasy!

I've uploaded some new photos so if you don't have facebook the link is:

http://www.facebook.com/media/set/?set=a.10100149356661848.2587907.199702150&l=c7f7676d61&type=1

Operation update

Hello, I just wanted to write and leave a quick update about how William's operation went. We're really busy preparing for Activ8 at the moment so not had too much blog writing time.

In a nut shell the PEG operation went really well. They took him straight up to PICU after the op but as soon as he arrived there they said he woke up and coughed his breathing tube out. After then he was fine and was moved the HDU later that day, then the normal ward the next morning then home that evening. We're finding the PEG easier to use and it's lovely having both of William's cheeks back at once!

He's come down with a nasty little cold today so has not been very happy but hopefully he'll be good again in a couple of days.

We said goodbye to William's consultant last week for a year which was a bit sad, but we have another great doctor looking after us in the mean time.

Not a lot else significant to say today! Bye for now!

Finally got round to updating!

It's been a while and I know some of you (Michelle ;-)) have been waiting patiently for the next installment of the blog!

Since we last wrote we've been pretty busy with Activ8 planning days, appointments, home visits and thankfully William has had a pretty good two weeks so I don't have my ususal just-got-home-from-hospital time slot for blog writing!

I don't want to go on for too long because a lot has happened. I'll write a few bullet points of the main things that have happened, but the main reason I wanted to write is because this Thursday William is scheduled to have his gastrostomy so I wanted to ask you to pray that he would stay well for it and that he would cope well with the operation. We have to arrive at the hospital very early on Thursday morning and wait till his operation. As he has been quite unwell recently they are planning on putting him onto paediatric intensive care (PICU) or high dependency (HDU) for monitoring over night after the operation. If all goes to plan we will hopefully be home Friday evening. We have met with a consultant from PICU last week who discussed possible scenarios with us. The biggest risk is, because William can have problems with his chest, he may have trouble breathing on his own again after being intubated for the operation. We just have to wait and see.
We feel pretty calm about it all and are looking forward to (hopefully) getting the PEG in and the NG tube out!

Here's a run down of some of the recent things that have been going on:

• We visisted Milton hospice for a tour round. It's a great facility and we are now just waiting to see if we've been approved to use the service. If we are we will then be assessed for how much respite we are entitled to.
• William has his pre-op x-ray and assessment at Addenbrookes so we've been over there a few times. All went well with them.
• He's had another EEG - we don't know what this has shown but is more for the consultant anyway to monitor his epilepsy.
• We have had vistits from the physio and OT who have bought William some wedges/supports to use in his bed to keep him in a good sleeping position. They have also delivered him a support system called the Squiggles (photos to follow). Check it out at http://www.leckey.com/products/squiggles-early-activity-system/ if you're interested. We've only had it a few days but we love it!
• We've had an assessment carried out by the continuing care nursing team from the hospital. Their assessment will now go to the panel to decide whether we are entitled to receive their services. This would involve a nurse coming to our home to look after William for a few hours - like a really fancy baby sitter!
• William was very well behaved for the Activ8 planning day two weeks ago. We had a great day with most the team coming to our house for lots of planning and socialising. Activ8 is just under 4 weeks away now so please pray William would be well enough to go - we would so love to have him there with us.
• William was also well enough last weekend that we were able to attend most of our Church's weekend away (down the road!) We had a really lovely weekend and it was great to be able to go to something and not worry about William's health. It's been one of the first things like this we've been able to attend for a while.
• Next week, Steve and I and some friends are due to go and see Take That in london. Please pray William would be well so we can leave him with his nans. We really want to go! And by we I mean me, but I won't enjoy it as much if Steve can't go! (Although Steve's stand in is an excellent second candidate!)
• William's new car seat is here! Hurray! He looks super good in it. We decided to go for the Britax two way elite - and we've been able to fit it in the front of the car which is great for when I'm driving him on my own. So far we would deffo reccomend it!

In general William has had a relatively good two and a half weeks. He had a cold the other weekend which we were a bit worried about but we sat it out at home and he got through it well. He's struggling a bit at the moment with a lack of pooing but a bit of constipation is nothing compared to most things we put up with! His fits have generally been not too bad. He's had a couple of afternoons/mornings where they've got bad but they have always settled back down after a sleep or just randomly. The other week he had a lot one evening and didn't settle off to sleep properly. The next morning he was awake early having them every couple of minutes for an hour or so. I gave him his morning feed and was prepared to give him a dose of Medazolam but once I started feeding him he settled back off to sleep and the fits just stopped and didnt start up again that day! So far we've not had to give any medazolam at home which is amazing and a bit of a shock. Just when you think you understand the pattern of his fits, they totally change and act in a new way. At the moment they seem to come and go, some days he has hardly any, some days he has a few and some bits of days he has lots, but generally they're not too bad.

I've been able to meet up with some friends in the last two weeks and my family has been over a couple of times which has been good. It's been good to have a bit of normality.

One thing I've been thinking about today...have you ever seen a severely disabled person, maybe just walked past them in the street. And have you ever thought to yourself how they just look totally spaced out, like they're not aware of anything going on, like there's nothing going on inside their head. Well if you've met William he probably has come across like that to you on at least one occasion. He often seems very tired and unresponsive compared to other children his age. But I have come to realise that although Williams reactions are very different to another childs his age there is lots going on. I know when hes tired/feeling unwell/contented etc because he communicates these things. You just have to know what to look for and you see him in a different way. It's really made me think about how I think of other people who have as severe a neuro disability as William. My assessment of them as unthinking spaced out people is probably rarely true, I just don't know them well enough to see what's going on and what they're communicating.

it's a hard life...

If you've not seen William's latest black and white photos click here

http://www.facebook.com/media/set/?set=a.1001010596578.2573377.199702150&l=a4848b94b1

 

That's all for now I think. We're a bit hooked into Season 5 of 24 at the moment and we're just about to watch another episode! Will try and update this week again post operation. Will try not to leave it so long next time, but generally no news is good news!

 

Quite a week

A lot has happened since my last post. We realised we weren't leaving the hopsital any time soon while they kept giving him oxygen over night when his sats dropped so we decided that he should only be given oxygen if he really really needed it. This meant we finally left hopsital again on Saturday lunch time. However after a lovely Saturday afternoon at a birthday party, things started to go down hill again on Sunday.

Sunday afternoon he had four fits within an hour where he went quite grey but then no more in the evening. However Monday morning he was having more and for about two hours they were every ten minutes so we took him back to hospital. Once there he stopped having them and only had one in the 4 hours we were there so we came home. However once home he started up again and was fitting every ten-ish minutes again. Meanwhile on monday Steve had come down with a nasty tummy bug and was stuck in bed feeling terrible. Thankfully William went off to sleep ok that night but by Tuesday he was fitting every 5-10 minutes throughout the day so we spoke to his doctor on the phone several times and she agreed we would try increasing his phenobarb dose that evening. We tried to sit it out at home but in the evening he was really sick and Steve and I couldn't take watching him any longer so I took him to the hospital. Unfortunately because Steve had had the tummy bug he wasn't allowed to go to the hospital until Wednesday evening so Steve's mum came with me. It had already been decided earlier in the day that if we ended up taking him in they would try giving him a dose of buccal midazolam. This is an emergency rescue medicine used when an epilepsy sufferer has a very prolonged fit or has lots of fits close together without recovering properly inbetween. It acts very quickly and basically stops the fits and makes you sleepy. Some children can react badly to it and stop breathing but it was given to William on Tuesday night and he seemed fine. He went off to sleep for a good while and William's lovely kind nanna offered to stay with him overnight so Steve and I could be together at home after a very difficult few weeks and a horrible day. The Midazolam is only a temporary measure and for someone like William will not stop the fits for any length of time. Therefore the next day they started again and since then have continued to be very regular, often 5-10 minutes apart. Last night he was given another dose of midazolam as the fits were stopping him from getting to sleep.

We have only come home from hospital today. Following his readmission we have had several long chats with William's consultant, the registrar involved with his care and one of the sisters on the ward. We have disucssed at length the fact that William's fits have now pretty much become uncontrollable. He is on the strongest medicines available and they are becoming less effective. Phenobarb is the only drug which ever made a really significant difference and that has now lost much of it's power. His consultant advised that he has a particularly severe case of Lissencephaly and epilepsy in infancy. Therefore although there are other drugs we can try, she believes they are not going to help. She is also particulaly concerned that he is having fits involving breath holding and dropping oxygen levels. Although these are all presently self rectifying, if they get worse they pose a big danger to his life. She has now made it clear that based on William's progress his condition is life limiting. She advised that there is a real possibility William won't live to his first birthday but he may live a few more years. Realistically, although she is unable to give any certainty, I don't think she expects him to live more than a couple more years max. His fits currently are unlikely to kill him. If the fits in which he drops his oxygen levels become worse then they could but at the moment he is most at risk from dying of a chest infection due to his poor muscle tone and inability to clear his own mucus.

We have therefore had many discussions regarding William's ongoing care and how much intervention we wish to have should he get into serious problems, considering that William will be very severly disabled and most likely be very prone to getting serious infections. Everyone involved in his care has been informed of the discussions we have had. Although we are now home William is no better. He is still regularly fitting and struggles to sleep. We therefore now have a supply of midazolam at home which we are allowed to give him no more than once every 12 hours. This is not how this medicine would usually be used but William has exceptionally bad epilepsy that is now defying all other medicines. We are still going to try a new drug starting next week once he has weaned off his Epilim, called Keppra but I don't think anyone has much hope that it will make any significant long term difference.

While the hospital have made it clear that we are always 'welcome' there if we have any concerns the reality is that we need to find a way of coping at home watching William fit very frequently throughout the day. We have therefore now been referred to a local children's hospice and the hospital's continuing care nursing team. They will both carry out assessments to consider our needs but we will almost definitely be entitled to respite care at the hospice.

Although this all sounds very sad, in a sense this has all come as a relief. The past few weeks have been very hard with the amount of hospital stays William has needed. The hospice has come at the right time for us and will provide much needed emotional support. Also, we have turned a corner in the way we view William's treatment. We feel we are no longer trying to control his fits, we have lost that battle. Instead we are now trying to make him as comfortable as possible, make the most of how ever much time we have left and enjoy every little smile because they will likely become few and far between as the fits become worse. The hospice will draw up a list of hopes and wishes which will be things we want to do with William while he is still here which will be good.

We are perhaps about to emabark on the most difficult part of this journey as we struggle watching William fit day after day. It's going to be flippin hard, it already has been. We've cried a lot of tears already, we fear how the end will come and we're scared that this could go on for a few years yet.

Please pray for us, that we would still have good times with him, and that this next leg of the journey will be as peaceful as possible x

Today has been a bit of a boring day. Not a lot has happened apart from William having his heart monitor taken off. He can't leave the hospital till he has 24hrs off oxygen. He was doing well today but seems to have trouble when hes sleeping keeping his oxygen levels at an ok level. We're hoping to meet with the community nurses tomorrow to discuss the option of having home oxygen because hopefully that will shorten our hospital stays. They can be reluctant to give you home oxygen and monitors because they worry you won't take the child to hospital when they need it beause you can cope longer at home but me and Steve know William and the system well enough now to know when we need to be in hospital. We'll see what they think and say and take it from there. I think everyone agrees that we're spending more and more time in hospital and we need a more sustainable option so hopefully we can figure something out. I'm pretty sure Steve and I should be made honoury nurses after this!

Spending as much time as you do on the ward you really start to get to know the nurses and some of the doctors. It often feels like a strange little community on the ward with people coming and going all the time. We do of course have our favourite nurses and doctors and they make our stays so much better.We are so incredibly grateful for having such an amazing ward to go to.

This afternoon Steve and I got a bit of time at home together while nana and grandpa watched William, and we went for a romantic KFC! It was nice to do something together and to do something 'normal'.

I had a really good chat with the ward play specialist this morning. She bought William a swing chair to try out and said we could bring in his high chair seat so he could spend some time sitting up rather than just lying in his cot and on us. She also helps us to know where we can get good toys for William and can bring stuff out to our home to try. She is hoping to take us on a music therapy day at a local hospice later this year which would be great. She's really nice and it was really lovely watching her interact with William. She obvisouly has a lot of experience working with all different types of children and she knew exactly what to do with him and was very sensitive asking how best to interact with him and William seemed to respond to her, she definitely got a smile and some noises from him. Watching him with her and watching someone interact with him with so much confidence and joy made me well up with pride and brought good tears to me eyes. William might not do a lot but any thing he does do is so precious to us. Yesterday I propped him on his side in his hospital cot to play. He usually lies really still when on his side but for some reason yesterday he seemed to enjoy it and kept giggling. Also when he gets sleepy he often lies with his arm in the air as if he wants someone to hold his hand so we do and we stroke it to help him go to sleep. And yesterday he had his arm in the air and i put my mouth against his hand so he could feel me talking to hin and kissing it and he kept grabbing my lips. I'm pretty certain all of these things are unintentional but they are small ways of him interacting with his environment and each of those things he does is spectacular. He also got told yesterday by the ear nose and throat doctor that he had cheeks to die for! And we figured he would know considering how many cheeks he must look at.

I also found out today, William certainly didn't inherit my lack of patience. The ward was very busy today with people coming in for day surgery. At lunch time William was trying to go for a nap but it was so noisy he was having a bit of trouble nodding off. Every now and then he would nod off only to be woken again by someone doing something nearby. While I got more and more frustrated that the poor little boy couldn't get to sleep thanks to the billion people buzzing round the bay, he just took it all in his stride, didn't complain once and eventually just nodded off, and then slept for about four hours!

So we'll just wait and see what tomorrow brings and hope we get some better solutions so we can come home and stay home!

Today Willam had a heart ultrasound to check the blue episodes weren't heart related. All seems well still there. He's currenty wearing a 24hr heart monitor to record whats going on but they don't expect to find anything. The doctor talked about giving us a stethoscope to go home with so we can listen to his heart when he goes blue to see if it slows or goes quicker. We'll see.
He also saw the Ear Nose and Throat surgeron because he's so snotty all the time. He said he is producing too much snot and has prescribed some nasal drops. If it doesnt improve then when William has the PEG op he'll ask the surgeon to check out his throat area then while he's under and look for anything untoward.

Also saw our consultant. We are going to wean him off Epilim as we don't think it ever made much difference and she wants to introduce a new drug called keppra and they only like to have him on three anti-convulsants at once otherwise it's hard to know which are making a difference. If that doesn't work we can try a drug called topiramate and if that doesnt work we'll try a ketogenic diet. William is not a candidate for epilepsy surgery, which I already knew, because his whole brain is messed up so they can't remove the dodgy bit because the whole thing is dodgy. Apparently some peple have half their brain removed. Our main aim at the moment is to control his fits that make him de-sat. His consultant mentioned that if it turns out that the major episode he had last week was a fit (which we'll only know if he does it a few more times) then "we shall need to have a different type of conversation". I'm presuming this will involve discussing supplying us with emergency seizure medicine or something. I don't know. It will definitely involve talking about the fact that its very dangerous if he makes a habit of it.

He is still in hospital because he still needs a bit of oxygen when he's sleeping. The nurses talked a little today about whether we might end up with home oxygen to use while he's sleeping if he doesn't pick up.

We also found out tonight that someone who was in our bay yesterday has subsequently come down with chicken pox so William is at risk because they shared nurses. He's had a blood test tonight to check for antibodies in his blood which will show if he's had chicken pox which is very very unlikely. Otherwise he'll have another course of aciclovir starting next week.

We've had lots of kind messages offering help but there is nothing anyone can do to help. William doesn't need a babysitter, he needs a fairly well trained carer. While we don't have this Steve and I have to stay apart at night, I have to face arriving home every night to an empty house and we can never really do anything without William. We are scared to leave the area, go on holiday or even leave William while we go very far. I've pretty much come to the conclusion that the only way to continue is to accept that I have no life. Whenever I've been in a really difficult situation before I've been able to end it. I dropped out of university twice, I've ended relationships that weren't working, but this is the first thing I've faced that I have no way out of. Life with William is a constant string of disappointments, cancelled plans, hopsital visit after hospital visit. Therefore if I have no expectation of life there can be no disappointment. I feel like I need to resign myself to a life of nothing in order to care for William. I wish we knew how long this would go on for. If we knew William would be like this for years to come we would move and live by the hospital, but there's no point in doing that if he stabilises within a couple of years or dies.

So anyway, life still stinks. William is still lovely and has the most beautiful smile (which I've been treated to lots today) but I won't say anything cliched about his smile making it all worth it because I'm not sure it always does. We love him with all our hearts but we will often wish we had a time machine.

There are no words

Well after nearly four days at home William is back in hospital. He'd been doing really well and had no fits at all yesterday but his cough got worse overnight and he's been more snotty today. That wasn't of much consequence but then today he suddenly had a fit about 3pm. It wasn't a big one but it was the type that make him de-sat. About half an hour later in the garden centre car park he had another one and went very grey in his face. We tentatively drove home but after having several more fits within the next hour we had to call the hospital who asked us to go in. Once we arrived they calmed down but he's had a couple more again this evening and has been de-satting quite badly with them and needing some oxygen. They've given him another loading dose of phenobarbitol tonight. His consultant should be in tomorrow so we'll see what she says and decide where to go from there.

I don't know what else to say. I am well and truly fed up. As wonderful and welcoming and light hearted as the lovely Holly Ward nurses are the fact remains that we have nothing that even comes close to resembling a life. Steve is trying hard to get to work as much as he can because we don't want to take the mick which leaves us with very little time together. I feel like we're in a catch 22 situation. Life with William is awful a lot of the time and life without him would be awful. I can't understand why this is happening. It's one thing to have a child like William and to cope with all that involves but we never expected we would be in and out of hospital this much. We spend our lives packing and unpacking hopsital bags, trying to figure out where we're going to get our next meal, barely seeing each other, getting awful sleep apart, not being able to make any plans, cancelling any plans we do make. We never thought it would be like this and it's a completely crappy existence. Once again life feels completely unsustainable and I feel completely abandoned by a God who makes no sense to me at the moment.

We are home!

We were finally released from the hospital on Friday evening after William managed a whole 24 hours without any oxygen assistance. We have been sent home with another week of treatment antibiotics and then a further three weeks of what they call prophylactic antibiotics. These are just to try and keep him infection free until his operation at the end of June for his PEG. If he has any signs of a chest infection then they wont operate so these are just in case antibiotics. He seems much better at the moment, is quite smiley and is having few fits. He's still breathing noisily and is breathing quite quickly but hopefully this will gradually improve. On Friday morning they did a synacthen test where they take blood and give William an injection of something and see how his body reacts. It's something to do with measuring the levels of steroids the body is producing. Anyway, his results for that came back good so all is well there. It was just to make sure his body is making steroids again after the course of steroids he had.

We're settling back in home well, if not a little edgy if William stays still for longer than usual! We're keeping a close eye on him, his temperature and his colour. Have you ever noticed that in life you rarely experience a single event that really changes you? Often we change over time as we go through different things, it's a slow process. Well what has happened this week feels like it has changed everything more than most one off events do. We have a very different view of William. Not only do we love him even more (having felt what it would be like to lose him) but we also see his disabilities in a new way. In some way we have learnt to embrace them more, we feel like we have a better understanding of how William works and we feel much prouder of him, whereas before we were perhaps a little embarrassed by all the things he couldn't do. We're starting to understand what makes him tick a bit more. He often laughs at seemingly nothing, he doesn't respond to the usual things a baby would and often seems in his own little world. We're now realising that the things we take for granted are the things that make William happy. Whereas we might be (temporarily) excited when we get some new clothes, or go on a good day out etc William seems to just take joy in hearing other happy voices, or in having his hair stroked. He doesn't always respond to things in the way you might expect but we're learning to spot what his reactions are. It's a steep learning curve! Often when he's gone down for a nap he'll wake up and because he doesn't cry we don't know until we go and check on him and we find him laughing at something in his cot. Who knows what!

I found another blog the other day written by a lady in America. She has twins, a boy and a girl. The little girl is perfectly healthy but the little boy (also called William!) has lissencephely. She tells this story on her blog (which i hope she won't mind me sharing) which really rung true to me...

"The sun was shining in Rochester New York! The Beyers twins and I headed to one of our favorite "old school" playgrounds made of wood with tunnels and tire swings. Blond curls and blond pony tails blowing in the breeze and reflecting sunlight; what a beautiful sight. My children captivate me. I put William in his special tomato chair in the jogging stroller and pushed him to a sunny spot. Normally playgrounds and too many children make me tense. Most do not offer much for William to do; and he is too heavy to carry around. So usually I push him in the jogger and we chase Ella yet the whole time I end up feeling stressed and guilty that he is not able to do what the handfuls of other children are doing around him. Today I let go of the guilt and the stress; do you want to know why??
I opened my eyes and saw how truly happy William was just to be in the sunshine; to hear the children laughing all around him. He was smiling and cooing and I don't think he gives a damn whether or not he is doing exactly what the other children are. It has been MY sadness and MY burden that he is not "typical".... but really it's all about quality of life. Both his quality of life and mine; life is far too short...." (taken from http://beyerstwins.blogspot.com/).

There are so many times already when our William can't join in with what other babies do and it makes me sad, but it really is true that most the time he's just happy to lie on the floor and wriggle and listen.

Another thing that struck me last night was this...I was watching Titanic (the film) and if you've ever seen it you'll know that end is really sad because someone dies. I won't say too much in case you've not seen it! Anyway, I don't know if anyone else is the same, but the reason I get sad watching sad films is I often put myself in the place of the person in the film. For example if in a film there's a couple and one of them dies then I get really sad thinking what it'd be like if Steve died. I know it's a bit depressing but I'm sure I'm not the only one that does it! Anyway I was watching Titanic, partly sad thinking how dreadful it would be if Steve died, but at the same time completely reminded of the horror of Saturday and how it felt thinking we'd lost William. I don't think I'll ever be able to watch a sad film again without that memory haunting me. Somehow it's made us see things in a different better way, it's concreted our bond with William and it's made us enjoy and love William for exactly the way he is. Steve said the other day, I'd given birth to William, but now he'd played a part in giving William life when he gave him CPR so now we've both participated in him being here!

Although spending time in hospital is never your first choice of ways to pass time, we really couldn't ask for a better children's ward to wile away our time on. The nurses are all lovely, as are most of the doctors. The ward is really well equipped and really new and everyone treats you really nicely. We're thinking of writing to the ward manager to thank them for the care we've received so far. I'm also thinking of writing to our local paper, you hear so much bad press about the NHS and we've received such great care since the start of my pregnancy, so I thought I'd write something nice!

That's all for now anyway. We are currently awaiting the arrival of Nanny Linda for a couple of days which will be lovely. Thank you for all your prayers and messages this last week and a super big thank you to our home group for the delicious meals they sent us every day in the hospital!

Here's a little video of William enjoying being back at home...

Getting bored of updates yet???

Still not a lot to say and I don't want to stay up writitng for ages because I'm trying to realign my sleeping patterns to that of a regular person so here is some bullet points of what happened today...

• William been off oxygen most the day, but given a bit tonight while sleeping to help him
• Moved rooms because infectious people arrived so we had to give up our lovely side room and move onto a bay so they could have private rooms.
• Had a long chat with W's consultant and new doctor about all his problems
• His consultant thinks he is having fits that make him go blue but thinks Saturdays major episode may have been due to mucus blockage in airways
• Going to carry out test to check how his body has settled back down after the steroids he had a bit ago and consider giving him small regular steroid dose if body isnt producing the steroids it should be
• Carry out check on his heart - just precautionary
• Dicussed plans with regards to medicines for seizures. The vigabatrin he is on should only be short term as if you're on it long term it can permanently damage your peripheral vision. Seen as William has hardly any vision, if we find this drug works we may have to choose to sacrifice his peripheral vision so we can control his fits. She has a list of other meds we can try including a special diet called a ketogenic diet.
• We spent more time with his new doctor and have decided we really really like her! She's really friendly.
• We discussed keeping him chest infection free ready for his PEG operation at the end of June and the medicines we might have to help with this. They don't operate if you are ill at all.

Still not sure when we'll be out. One nurse mentioned tomorrow but the doctor wasnt in a rush to send him anywhere so we'll see.

And another...

Not a lot else new again.

William will hopefully finish his antibiotics tomorrow. He's been out of the oxygen most the day but needed a bit more this evening because his levels were a bit low when he slept due to his chest infection. Can't remember if I mentioned before but our consultant is going on leave for a year in July. The doctor who will be taking over for the year is one we know pretty well and who we like a lot. She came in to see us today and had a good chat about what had happened. She thinks the episode was most likely either a fit or that he had mucus stuck in his throat blocking his airways. I think he'll be in hospital for a little while longer until he really gets over the chest infection and doesn't need the oxygen anymore. We might get to see his current consultant tomorrow which would be good.

This evening Steve and I were talking about what happened on Saturday. Have you ever heard that when you go through a traumatic event your brain releases some chemicals to numb it from your memory so it doesn't traumatise you? Well it turns out my brain had sort of done that! Steve was telling me that when I went to get William out of his car seat when we were driving along I started saying "oh my life, oh my life, oh my life", then when I passed William to Steve in the front once we'd pulled over I was crying "I think he's dead". I had totally forgotten all this until he said. It brings back the absolute horror of that moment.

On a very separate note...this morning I was just about ready to leave the house when I needed to go the loo. As i walked up the stairs i felt a stone in my shoe, but somewhere in my head I thought I hope it's not a spider. I got upstairs and presumably because i suspected it might be a spider i took my boot off and threw it across the floor. As i did so a rather large squashed spider fell out. The spider must have got in my boot in the night and I had walked around for a good 15 mins with it in there without realising. For someone with an absolute phobia of spiders this was definitely not a good thing to happen. I spent the next five minutes hyperventilating and trying to talk to Steve on the phone through my terrified cries. Plus I have lost my voice at the moment so he really had no idea what I was trying to say. I managed to leave the house in a different pair of shoes feeling very creeped out the whole drive to hospital. Thankfully my wonderful in laws came round the house and cleared up the spider, hoovered out all my shoes and checked around for any friends spider no.1 might have been harbouring. I spent the whole journey to hospital feeling like Job, everything was against me, but feel a bit calmer about the whole ordeal now. Boy do I hate spiders.

Oh and I forgot....today William had fun with the mobile sensory unit...

All that sensory play made me very sleepy.

Another update

Hello,
William has made more good progress today. He had his drip taken off this afternoon so is now just being fed through his tube, hes managing three hourly feeds now. He's also spent some time out of his oxygen hood this evening and been smiling more which is good. He might get off the oxygen all together tomorrow. We are supposed to have an appointment with his doctor tomorrow anyway so are hoping to see her on the ward. We were supposed to be going to Cambridge on Wed morning for a x ray and MRI so not sure what will happen with that yet. He's still having antibiotics and today the antibiotics poo arrived! It is gross!

He had a good night last night and the nurses were really pleased with him. All in all good progress. We had a lovely dinner tonight bought provided by the Naughtens/Zam Suans! and Steve went to work this afternoon while I enjoyed some visitors. Been a faily positive day, but it's a bit miserable watching Glee on my own! Roll on having my husband back home to watch it with me (and the little man to sleep upstairs while we watch it).

Update

Not much to update on tonight.

William has been more stable today. His temperature has stayed down so he's not really had any fits, just a few spasms. He's managed a few very small feeds through his tube but they think because hes got a chest infection he's having to work a bit too hard to digest the milk so he starts breathing quite fast and laboured. They did reduce his drip feeds this morning but are thinking of maybe increasing them again until he picks up a bit more. He's still in his oxygen hood but is on lower levels of oxygen than yesterday. We got him out the hood a few times today for a cuddle but he wasn't maintaining his oxygen very well so needed the mask. He's still on IV antibiotics too. We've had a few little smiles this evening so think he must be feeling a bit better. Hopefully once the antibiotics get on top of the chest infection he'll find things a bit easier and will manage more food.

We've had some much appreicated visitors today which broke the afternoon up. Steve is hoping to go into work tomorrow afternoon so nanna will be taking over for a bit with me in the afternoon. Not a lot else to say this evening. Thank you for all your messages, we really appreciate them.

Worst moment of our lives...so far

Ok quick update...

William had been a bit not his usual self the latter part of this week. Yesterday he started being quite a lot sick, and snotty, and I have a bad throat so thought we were both getting colds. He had no temperature. This morning he was really sick again. Yesterday afternoon he also had an episode where her went a bit blue but recovered fairly quickly. This is not toally unusual behaviour for him so we didnt panic because he always sorts himself out pretty quickly. This happened a few more times this morning, he would go a bit purple/blue. Right before he was sick this morning he did it again. William struggles to clear his snot/mucus so we came to the conclusion the purple/blue episodes were down to either mucus blocking his airways or were fits. When he goes blue he also has this face he pulls and he was done it before on the odd occasion so I'm pretty sure its a type of fit.

Anyway, we made a brief visit to peterborough this morning to buy something, then on our way home William started to have another of these episodes. He pulled his funny face, started to lose colour a bit and spat out a bit of mucus, except then instead of recovering he got worse and worse and worse. His lips went very grey and he was totally out of it. I took my seat belt off and got William out of his car seat. At which point Steve realised something was wrong and pulled over onto the hard shoulder. By the time I had hold of William he had gone very blue and very floppy. In panic I handed him to Steve while I called 999 and tried to explain to the dispatcher where we were. Meanwhile Steve did a bit of CPR on William who was still looking very blue. He looked completely lifeless and for about half a minute we both thought he had died. You know those machines they have on Casualty - if he'd been on one of them I'm sure it would have gone beeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeep.

Then after a few minutes William started to come round and a police man arrived. It turns out the police man had not been sent to us but just happened to be passing. Seeing us he pulled over and stopped to see if we were ok and quickly realised we weren't. He told us to leave our car and get in the police car and he'd take us straight to A & E. By this point William had come round and was looking a bit more normal. The police man cancelled the ambulance and called through to a & e. On arrival there we were seen straight away. They put a canular in his hand and took some blood. He was given an oxygen mask and put on the monitor. They also carried out a chest X-Ray. We were then moved up to the childrens ward once he was a bit more stable. The lovely police man went to retrieve our car and bought it the hospital for us.

We're still not sure what had happened. In A&E he had a high tempertaure which took a while to come down. As a result he had quite a lot of fits when we were on the ward and had several episodes of turning blue and de-satting quite seriously. He is now in an oxygen hood and his temp has come down so hes having less fits. He's had intra-veinous antibiotics and is on a drip because hes not been given any food yet for risk of aspirating. We don't know whether the lack of breathing is due to an obstruction caused by his excess of mucus or whether it was a fit. My instinct is that it was a bad fit because I am certain he has a type of fit where he stops breathing. Hopefully we'll find out more tomorrow.

Steve is at the hospital with him. We came to an arrangement between ourselves and Steves work a while ago that in such events Steve would stay overnight and take some unpaid leave. I stayed overnight with him once and was a nervous wreck by the morning. It works better for us this way, Steve is a bit of a hero.

Today, for the first time, we felt what it would be like if William died, if only for a short time. I have no doubt we will experience this again and I am quite sure that in our life time this will happen again and not end in such a good way. Being William's mum is really hard. There are days like today where you go through so much trauma that life feels completely unsustainable and it breaks our hearts to watch William suffer so much and we think maybe it would be better for William if he went to live with his dad in heaven. And then you think you're the worst parent in the world for thinking that but such is the pain we face very frequently. I'll write more soon when I can but I wanted to finish with this song. On the way home from hospital tonight this song came on my CD. At a time when it's hard to believe there is a God that would let us all go through this, this song made me realise that if the worst thing happened at any time and we did have to face losing William, William would not have missed out. He'd be restored and he'd have the brain he should have living in the presence of his Father in heaven. You might think this morbid and depressing, but I make no apologies. The reality is that William has many serious problems, we've been told he's most likely to die from his fits or a chest infection. Today he could have died from a combination of the two.

http://www.youtube.com/watch?v=bIq1j59R6tI

How lovely is
Your dwelling place
Oh Lord Almighty,
For my soul longs
And even faints
For You
Oh, here my heart
Is satisfied (is satisfied)
Within Your presence
I see beneath
The shadow of
Your wings

Better is one day in Your courts
Better is one day in Your house
Better is one day in Your courts
Than thousands elsewhere
Better is one day in Your courts
Better is one day in Your house
Better is one day in Your courts
Than thousands elsewhere
(Than thousands elsewhere)

One thing I ask,
And I would seek,
To see Your beauty
To find You in
The place Your glory dwells
(One thing I ask)
One thing I ask
And I would seek,
To see Your beauty
To find You in
The place Your glory dwells

Better is one day in Your courts
Better is one day in Your house
Better is one day in Your courts
Than thousands elsewhere
Better is one day in Your courts
Better is one day in Your house
Better is one day in Your courts
Than thousands elsewhere
(Better is one day)
Better is one day in Your courts
Better is one day in Your house
Better is one day in Your courts
Than thousands elsewhere
Better is one day in Your courts
Better is one day in Your house
Better is one day in Your courts
Than thousands elsewhere

(My heart and flesh cry out)
My heart and flesh cry out
For You, the Living God
Your Spirit's water to my soul
I've tasted, and I've seen
Come once again to me
I will draw near to You
I will draw near to You
To You

Better is one day
Better is one day
Better is one day
Than thousands elsewhere
Better is one day in Your courts
Better is one day in Your house
Better is one day in Your courts
Than thousands elsewhere