Eliza: William's Medicines

Today I'd like to tell you about all the different medicines William has to take.

I LOVE calpol! I am always trying to trick mummy into thinking I have a toothache so I can have some calpol. So I think William's really lucky getting to take sooo many medicines! 

William has to take eight different medicines a day. Some he just takes once a day and some he takes two or three times. Some days he has to have some extra medicines if he's feeling poorly. On a normal day though he has 14 lots of medicine to take. 

Here I am helping William to have his nebuliser

Two of William's medicines are special ones that William needs to help his breathing. He uses a special machine called a nebuliser to have these medicines. The nebuliser turns liquid into a vapour that William can breathe in through a special mask. 

Three of the medicines William takes are to help him to have less seizures. When William was a baby his brain didn't grow the same as everyone else's. This means his brain doesn't always do the same sorts of things that my brain does. Sometimes William's brain makes him have seizures. This is where the brain get all muddled up and sends out too many messages at once to other parts of the body. William has lots of different types of seizures because lots of different parts of his brain get muddled up. Some seizures make William sad and some make him laugh, some of them look a bit scary but William is always brave and doesn't worry so I don't either. 

With William's tea time medicines

The other medicines William has are for all different things! One of them helps him to go the toilet, one helps him not to dribble so much and one helps his tummy. 

He also has some extra medicines that he takes only when he needs to take them. He has some to take when he has too many seizures and he has some to take when he can't get to sleep. He has so many medicines he has to have a special cupboard to keep them all in! 

I'm not really allowed to help with William's medicines because it's very important that he has just the right amount but here's a few photos of me helping mummy so you can see what it looks like. Apart from the medicines William has using his nebuliser, he has them all through his tube. We have to put them into special syringes ready to give him. Some of the medicines needs shaking and I like helping with this bit the best.

Next time I'm going to tell you all about some of the things William does that might seem a bit strange or different and try to tell you why he does them!  

Eliza: Playing with William!

Hello again! Today I'd like to tell you about some of the things William's likes to play with!

William doesn't like my dolls

William likes kicking his legs!

William doesn't like the same toys as I do. I like playing with dolls and my kitchen but William thinks those things are boring. William's favourite thing to do is kick his legs and wriggle. Some days he's too tired to wriggle but when he's feeling awake he loves to move!

William doesn't need very many toys because he likes to play with the same thing for a long time. He likes to spend a long time thinking about things and doesn't get bored as quickly as I do!

William has his own special basket of toys. Some of his toys are nice to feel, some make funny noises and some of them light up to help William see them. I like to pick toys for William to play with. William finds it hard to hold things in his hand so I help him by opening up his fingers and putting things in his hand.

William's toy basket

William loves beads like these
because they make a good noise
and they feel nice.

Here I am helping William to
play a shaker

         
William's most favourite toy is his chimes. They nearly always make him smile and he enjoys moving his fingers to make a noise. William likes these the most because he doesn't need to do too much to make a loud noise! William finds it hard to move his hands and arms so it is good for him when he doesn't need to do too much to make something work.

I like playing the chimes too!

 William can't play with me like most older brothers can but I don't mind because I like to find different ways to play with William. He's a great big brother because he's never mean to me and always lets me share his toys. Even when I'm a bit naughty and make William jump he still doesn't get cross with me.

Check back soon when I'll be writing about all the different medicines William has to take!

Eliza: Feeding William

Welcome to my first blog post!

My name's Eliza and William is my big brother. He's not quite like other big brothers but I still think he's the best big brother in the world! I'd like to tell you about some of the things William does a bit differently to other people.

I thought I'd start by telling you about how William eats and drinks. William can't eat and drink in the same way as most people do because he finds swallowing very tricky. Instead of putting his food and drink in his mouth like I do, we put William's food through a special tube straight into his tummy so he doesn't need to swallow it. William is very happy about this because he doesn't like having things in his mouth and it means he can have his food even when he's asleep!

William's feeding pump

The special tube that goes into William's tummy is called a Mickey button and mummy and daddy have to swap it for a new one every few months.

Just like me William needs to drink lots of water to stay healthy. He has his water through his feeding pump. This is a special machine that lots of William's friends have too. You tell the machine how much water William wants and how quickly he wants to drink it and the machine does it all for you! It's very clever. I like helping by pressing the buttons.

Here I am holding a syringe! William is having his drink of
water while he's asleep! He loves to sleep!

William has three meals a day just like I do. Most people who have a feeding tube like William's are fed a special type of milk as their food. The milk has everything they need in it to keep them healthy. William used to be fed a special milk called Nutrini. About a year ago though, my mummy and daddy decided it might be better to give William normal food like I eat. The problem is the food still has to fit down William's little feeding tube! This means all of William's food is mixed up by a big noisy machine called a blender. You can put any food in the blender and it will come out looking like a milkshake! William's food doesn't go through his feeding pump because it's a bit too thick so we have to push it into his tummy using a special syringe. I like helping with this! Sometimes William is kind and lets me use his old syringes to squirt water in the bath!

       Here's William's lunch ready to give

Mummy and Daddy do lots of maths on their computer to make sure William gets just the right amount of food because he can't tell us when he's hungry or full. William has breakfast just like I do with some weetabix, milk and fruit. For lunch he has a sandwich with some fruit and for tea he usually has whatever I'm having! Our favourite is Shepherd's Pie and banana for pudding!

It needs a quick stir first though!

Eliza's Blog!

Eliza has decided to start her own new feature on the blog!

Lots of children are interested in William and there can be a lot to try to understand with all his different machines and tubes. So Eliza is starting a new series where she will be teaching you all about life with a disabled brother!

Her entries will show up on the home page, or you can click on the option above to just see all her posts. Check back later for her first entry!