Hirschsprung's Disease

Hirschsprung's disease is a fairly rare condition that affects one in every five thousand babies born, however I have still managed to meet two very local children who have been diagnosed with hirschsprung's disease, one when he was born like my little boy, and the other was diagnosed much later, when she was over two, which then comes with it's own set of problems. Hirschsprung's disease affects the bowel, and means that the nerves which allow the child to poo are not present. Obviously this means that the child starts to become unwell, and gets a big tummy (distended abdomen) they might vomit (sometimes green or rown which is the bile or sometimes even faeces) and won't eat. This affect children in varying degrees, sometimes meaning they need surgery straight away, and other times meaning the condition is managed with laxitives until it is diagnosed, and then they normally have the operation. There are two different types, long segment and short segment Hirschsprung's disease, and most children are affected by short segment, which means it is only the lower part of the bowel which doesn't have the nerves, rather than the majority or all of the bowel. Our son was born with short segment hirschsprung's disease, which he initially had an operation for. This operation removes the part of the bowel which does not have any nerves in it (the one our son had was called a pull through operation, although I think there are different techniques). This would normally allow the child to start going to the toilet normally, although because some of the large bowel has been removed, which normally soaks up water from the poo, it can be almost runny when they first start going, and it can give them very nasty nappy rash! I really didn't mean this to be a long explanation of Hirschsprung's but I thought it might be useful as not many people have heard of it. Also, when our son was first diagnosed I looked everywhere for a reader friendly description, that wasn't full of medical Jargon, and wasn't full of awful stories, so I guess this could be it. Have I missed anything?

A day recovering from three or is it four sleepless nights

Poor old Britney Spears, not only has she lost custody of her little boys, now she has been carted off to the asylum with the world's press following in her wake, and I think my life is complicated. Didn't have to get up until 8.30am this morning as no playgroup to rush to, and the children decided to lie in until then, or I decided to lie in around them. An update on our situation. We have a nearly three year old and an nearly nine month old, both boys. The eldest has hirschsprung's disease and has a colostomy bag. I think one of the things I want to do with this blog is let people know, who have maybe just received a diagnosis or been handed back a child with a colostomy bag rather than a nappy, whether it is going to be for a couple of months or forever, that it is ok and "You can do it" in the words of the Waterboy's friend.
Today we have been visiting the breastfeeding support group I help out at, sounds wierd I know as I have been told many times, particulary by my childless friends and when I look at it again it does sound as if we sit in a circle and take it in turns to stand up and say "My name is ...... and I am a breastfeeding mother", but it isn't, wierd that is, and we don't. It is just for help and advice, particularly for new mums who are struggling or just need some one to say "You are doing really well", so that is my job. The reason I am passionate about it stems from when my eldest was born and he would not feed, and didn't for five days. I was close to giving up trying, and when he was admitted to hospital I wasn't allowed to feed him, so I had to express milk for him, and spent three months on and off, plus following visits hooked up to a breast pump, which believe me doesn't make you feel like the yummiest mummy in the world. We were very lucky, with a supportive consultant and great health care professionals who encouraged me to keep going, and I know this is not the same for everyone, so I like to do my bit. I am one of those irritating people, who use washable nappies and want to save the world singlehandedly, whose sisters roll their eyes at the mere mention of my philosophy on infant feeding (they are not big breastfeeding fans) and whose friends think I am the biggest hippy on the planet (Vegetarian as well, I am starting to sound as righteous as they come). Back to the day in hand, my youngest is teething plus full of a cold, so sleep is at a premium at the present, and with the eldest still waking up every night, partly due to tummy aches (a symptom of hirschsprung's disease) and partly due to wanting a midnight feast (I made the fatal mistake of giving in just once and shall forever regret it) me and the hubby are on our last legs.

Well this is the beginning, and I am trying this out to see how I get on with my online diary, or just spouting useless opinions on the world and the day to day meanderings that make up my life. Post one I suppose should be about me and what makes up my life, two children, a husband and a dog, which is probably the same as a million other people out there so we should have a lot in common. My interests and other exciting things will come out as we go along so I won't make a list of how I like gardening or watching sunsets as I don't suppose that would make very interesting reading. Day one starts here with the kids in bed with a variety of childhood winter illnesses and me searching the internet to see if I can come up with a job or something newsworthy to interest me, I have had enough of browsing ebay and trying to sustain my flagging shop, and the only thing which has raised my interest is the fact that Jeremy Beadle is no more and that Sky One are bringing Gladiators back, these two pieces of information combined are enough to send a person of my age back to a simpler time when mum cooked tea etc and we were free to spend saturday evenings awoogaaaahing at the tv and hanging around the local telephone box, instead of struggling with the decision of whether it should be fish fingers again (well fish is good for them) and doing a six o clock count down until they are in bed. I will spend the evening mourning the Beadle's untimely demise and looking forward to the (supposed) snow avalanche we are due for in the next couple of days (hooray for reliving my childhood, I'm sure I can get a sledge from somewhere even if it will only be for 1/2 an hour before we all get too cold and fed up, then it can languish in the back of the garage until april, when it will be thrown in a skip, along with the rest of the rubbish, so it can be converted).