A day in the life of Hugo

6.50am: yawn, I'm awake, what should I do? I know think i'll wake mummy and daddy up too 'mmmmm - dadadada da da da - wa waaaaa'

It's worked, Mummy is getting out of bed and coming over to my cot, if I bounce around now she might pick me up and I hope she changes my wet nappy too.

My mummy is brilliant, she changed my nappy and then put me in bed with her and daddy. My daddy is funny, he keeps his eyes shut when I get into bed with him, but I bounce on him and bang him in the face until he opens them! 'dada dada dada da da da' It works to shout at him too.

Oh where is mummy going now, she just got out of bed again, she is unplugging my suction and feed pump and taking them out of the room, I can't see where she has gone now, oh well back to hitting daddy in the face again!

7am: mummy has come back into the room, I put my arms up as I know that we are now going down for some breakfast. Mummy picks me up and then I wave at my daddy, he always waves goodbye to me before we go down the stairs, now I even pull the door open to get out of the bedroom - I love breakfast time.

Mummy puts me in my walker and I follow her into the kitchen and watch her get my breakfast ready. She puts the kettle on and makes a cup of tea for her and daddy and then she gets my milk ready. I have special milk, it comes straight out of a bottle and has lots of calories to make me big and strong, mummy also puts some gaviscon in my milk to try and stop me being sick. Mummy then gets my medicine ready, I have 3 with my breakfast, 2 of them help my heart work better and one is to help my tummy empty quicker. After mummy has got all of this ready, It seems to take ages, I'm a hungry boy! We go into the dining room and mummy puts me into my high chair. Mummy then gets out my PEG tube and gives me my medicine first before attaching the feeding tube to my tube and then she starts the feed. My feed takes 1 hour to go into my tummy so we have to sit and wait for this to happen.

Mummy has her cup of tea and then some cereal, she keeps trying to give me baby breakfast rusk or porridge, but I don't like to eat anything in the morning, I shake my head for no and push the spoon away. I just want to play with my light toys - silly mummy should know this by now! I do have a little drink out of my bottle though and its very nice.

8.30am: my feed pump beeps and beeps, this means mummy can turn it off and let me get out my high chair now. I have been shouting at her for ages now, and kicking my legs to get out, I don't think she understands what I am saying cause she hasn't let me out yet. Mummy disconnects my tube and puts some water in to make all the extra milk go into my tummy, I get excited and grab the syringe, I love to play with my syringes at the moment, they are great to put in my mouth and bite on.

9am: mummy takes me up to get dressed, I am being naughty today, I keep wriggling around and laughing at my mummy, its very funny to do, mummy keeps laughing and saying in a loud voice 'Hugo stay still' I think she likes me playing this game with her, I think I will keep doing it for a bit longer...........

9.15am: mummy has got my clothes on and we are now cleaning my teeth, I love this and want to do it myself, but its hard to do. Mummy has to do it in a special way as I can't swallow the toothpaste so we have to brush them a bit and then with a wet flannel wipe all the toothpaste out of my mouth and then do it again and again, it takes a little while but I know what to do now and open my mouth for mummy to help her, I am such a good boy (mummy told me that).

9.30am: we go back downstairs and mummy puts me in my walker so I can have a whizz round while she clears up the breakfast mess we made. I love my walker now, I can now turn it round and go in and out of rooms by myself. I love to bang into doors and walls too, Its funny as it makes a big bang and daddy laughs, so I do it some more. I then crash into daddy's legs, he yelps and so I laugh at him and do it again, mummy is laughing now, perhaps I should do it again?

10am: mummy is doing some chores so I am now in my activity station and she is keeping an eye on me, I love my activity station as it has lots of lights and bright colours and noise's, such fun for me as I can't see and hear very well and it has big buttons and I can see them. I can't move around in my activity station though, but I can bounce lots and make lots of noise when I am doing it!!

11am: mummy is getting my next feed ready now, she is putting the gaviscon in again and shaking it all up, I like to watch her do this, sometimes she even lets me help her shake it. Mummy puts me in my high chair again and she gives me some water from my bottle, ahhhhh thats nice, I love my water, I wish I could drink it more often but I'm not allowed. Mummy has got some mushy food for me to try now, she is giving me some apple and blueberry mush, its quite nice actually and I take a few mouthfuls, mmmmmm actually I might have a few more, I have got losts around my mouth now, yummy!!

Mummy can't let me have too much but I enjoyed what she gave me and now she presses the button to make my feed start and I sit like a good boy again for a bit. After about 20 minutes I start to get tired. Mummy is so clever as she already realised and is getting me out of my chair for a cuddle, I love snuggling into my mummy and I am just starting to........zzzzzzzzzzzz

1.30pm: when I wake up it takes me a few minutes to see properly, mummy shut the curtains and its very dark in my bedroom, I roll over and start to kick the side of the cot, it makes a good banging noise - I like loud bangs, they are good to hear and I always hear those sort of noises, sometimes the noises around me are too quiet and I can't hear them at all. After 5 minutes of banging mummy appears at my cot, she is clever, she must have heard all my noise. My feed is finished now and mummy has some more medicine for my tummy, she gives that to me and then changes my nappy - its a big smelly poo, I don't like to poo all the time as it hurts me to do sometimes, but mummy is always good and puts some cream on my bottom.

2pm: mummy and me decide to go for a walk, we have to be quick though as my feed needs to be started again at 3pm so we can't go for a really long walk today, but we can have a little walk. I love to go out in my pushchair. Today is a nice walking day because its not very very sunny and mummy won't have to cover my eye to stop the sun hurting it. Mummy gets all my stuff ready, we have lots to take with us, mummy always takes a bag with some eye drops, my bottle, my dummy and bubba cloth, some nappies and wipes, my emergency card and her phone, then she has to get my suction all ready and spare catheters and yankers. All this has to go into the pushchair before we go and we can't forget anything. Finally mummy puts me in the pushchair and straps me in, she has to pull the cover over my head to stop the bright light hurting my eye and then we say bye to daddy and go.

I love walking with my mummy, I am always very good and I talk lots on the way round, I keep shouting da da and squeeling at mummy, she does smile a lot at me and keeps telling my I am really good.

2.45pm: we get back after our walk, daddy unloads all of my stuff for mummy so she can get me in the house and start getting my feed ready again, poor mummy spends lots of her time making my feeds for me, she is very good at it though and always gets it right. I have to have some more medicine with this feed again, lucky I don't have to taste it all, this one is salty and not very nice to taste. Mummy has to let this medicine dissolve so it takes a little while to do. She puts some more gaviscon in my milk and gets it all set up to my pump again. It bleeps again when she turns it on, I always bounce when the bleep goes, it means that I get food in my belly soon.

I sit with daddy while mummy connects the feed to my PEG. Daddy is going to sit and have a cuddle with me for a while, I love cuddling my daddy, he is always so much fun and blows raspberries on my belly.

Mummy keeps telling daddy to not get me too excited in case I am sick, I think she is being a spoil sport!

4pm: my feed is finished and now daddy is giving me to mummy? I don't like this, it means that daddy might get up, oh he does get up, where is he going, oh no, 'waaaaaaaaaaa' don't like daddy leaving me, mummy where is he going. Mummy tells me its ok, daddy has to go and do some work, but he will be back later. Daddy comes back and gives me a kiss, but it makes me cry even more and now mummy is telling him to go too, I don't want my daddy to go.

Mummy gets one of my favourate toys and I stop crying, I want to play now. Come on mummy lets play. Mummy lays me down on my play mat, she did try to get me to sit, but I get grumpy and find it hard to do so she lays me flat on my back, I have just learned to shuffle on my back to get to my toys, its hard work and makes me puff and my breathing come a bit fast, but its good fun too.

5pm: mummy decides that I need to go and have a bath, I love my bath time. Mummy takes me upstairs and puts me in my cot and then goes out of the room, I think she is going to run my bath, if I listen I can here the water - yes I can here it now!!

Mummy comes back in and puts me on the bed and starts to undress me, I get very excited and start to roll and bounce around on the bed, I keep squeeling and laughing at mummy, she keeps laughing at me. Mummy takes all my clothes off and carries me into the bathroom. There are lots of bubbles in my bath and its lovely and warm.

Mummy sets my special seat and puts me in the bath. I have my own special seat to sit in because I can't sit on my own, its blue and very comfy, mummy can move it so I can lay flat or sit up.

Mummy gets my toothbrush to clean my teeth, I love this bit, I even open my mouth now for her and try and hold it myself, mummy has to do it in the special way again, but after she has finished as I'm in the bath I'm allowed to hold it and chew on it today.

Mummy is the best person for my bath and she washes me really well. She even washes my hair without getting any water in my eye, oops, mummy is cross, she forgot to take out my hearing aid and its a bit wet now, she puts in on the towel to dry, silly mummy, she always forgets he he.

Mummy gets me out of the bath and we go back to the bed for me to get dry, I get my hair dried with the big noisy thing that blows hot, its great and I love blowing raspberries back at it. Mummy is good but daddy is always better at doing it, mummy shouts for daddy and he comes and does it for me, I love my daddy!

While daddy does my hair, mummy dries me and then daddy holds me and plays with me while mummy turns my PEG. Mummy has to do this every week, it doesn't hurt me, but sometimes feels a bit uncomfortable, she has to undo my clip, then push the tube back into my tummy, sometimes now I try and grab it while she does this, thats why daddy is here to help today. Then mummy turns the tube all the way round, and then pulls it back out of my tummy again. she gives it a wipe and measures how long it is, then she puts the clip back in place and its all done. I am such a good boy staying still for her, she gives me a big kiss!!! Daddy looks a funny colour though, I don't think he likes it when mummy has to do that to my tube......oh dear, poor daddy.

6.30pm: We go down stairs and mummy lays me on my playmat so she can start to get my next feed ready and all of my special heart medicines again, I have to have these 2 times a day.

I am being sneaky, mummy has put me on the floor and I shuffle on my back using my legs and head to push me along, I have decided to go and explore! I have now worked out that if you go out of the door you can play in the hall way, its good fun there as I can bang my feet on the wall and it makes a nice noise. I have also learned to back crawl to the stairs where I can now roll onto my tummy and pull myself up to the first step, oh busted, mummy just saw what I was going to do and has come and stopped me, she is very clever is my mummy, she always know's what I am doing.

Mummy picks me up and puts me on the floor by the kitchen door so she can keep an eye on me, I decide to try and lay on the kitchen floor too, but its hard and cold as it doesn't have the soft mat like all the other floor, it has big squares instead?

7pm: mummy has all of my food and medicines ready and we go and sit in the lounge, daddy comes in to sit with me so mummy can make them some dinner too, daddy keeps saying he is hungry, poor daddy, I don't think my mummy feeds him as well as me!!

I love playing with daddy again, he is so much fun and lets me bounce and jump around, I get all excited and then mummy comes in and tells daddy I have to try and be less bouncy, I think mummy is wrong, so I bounce even more.........daddy starts to laugh, but then I get a bit sick, oh dear, so daddy has to suction my mouth which I really don't like, mummy comes to help too as I am wriggling about and trying to pull the catheter out of my mouth. When all the sick is gone I then try and help daddy by putting the catheter in my mouth again, daddy and mummy laugh at me doing this and tell me I am a very good boy.

Mummy goes back out and daddy sits with me again, but I have to keep more still this time and daddy stops playing with me so much, I didn't do anything wrong but I think its to stop me being sick again.

7.45pm: I am starting to feel a bit tired now, my eyes are getting heavy but I want to keep playing with my daddy. Mummy comes in and daddy gives me to her and she takes me up to the bedroom and we sit on her bed and have a cuddle.

I love to cuddle my mummy like this, she rocks me and gently talks to me and tells me lovely stories, tonight she is telling me about going for a long walk on the beach, it is sunny and the birds are singing, we are walking on the sand and the sea is in the distance, mummy says that the air smells of salt and is fresh, she tells me the sky is always clear and blue. I can't wait for mummy and daddy to take me there. I can't keep my eyes open for much longer, they are now very heavy, mummy kisses my head and lifts me into my cot, I roll onto my side and cuddle my bubba cloth, I am thinking about my mummy's lovely story........zzzzzzzzzzzzzzz