About Me

Hello everyone my name is jake and I'm 4 years old, I live with my mummy, daddy my brother and soon my baby sister. My mum has started a blog so people can learn all about me. As she tells me everyday that I am special and I have a very rare condition called Diamond Blackfan Aniema, and it only affects 600-700 people in the world and only 105 of them are in the United Kingdom. The condition is where my bone marrow doesnt produce red blood cells, so my body functions on less than half the level it should. Our heamoglobin should be between 13 and 15 and mine are very very low, when I first fell ill they were only 3.9. And now are alittle higher. I am living on blood transfusions, and a very high dose of prednisolone. This is my future. I will up date as much as I can I hope you will join me on my journey..xx

Monday 26 September 2011

Well what a week

Well what a week it has been for us all. Thursay Jakey went to school after having time off with feeling exhausted, so we were so happy that he was able to go back and play with the other children at school especially as they have only really just started full time reception class and he has been off more than he has been there. He had a great day, we even walked home with very few rest spots he talked and talked about school and how much fun he had. And then at home he sat and played with his big brother before he went to get in the bath, and thats when everything went wrong. Jakey started bleeding heavily from his back passage, the blood was so heavy it looked like he had opened a vein, it was everywhere. When I checked his bum there was ahuge sac hanging there, horrible to explain I know but there is no other way, So we phoned the hospital and they told us to take him through. So we rushed into the car and off we went, on arrival the on call doctor had a little look a Jakey but he wouldnt let her no where near him, But the sac had gone back up his bottom. So he was admitted. He was monitered through out the night and his obs were stable, which was great. The following morning the specialists who deal with Jake came to see him, and had a chat and a look at him, and they said it maybe possible it is hemorroids, but as jake isnt suffering pain or any other signs that you would get with hemorriods they also think it could be a rectal prolapse. They specialists who saw Jake decided he needed to see the surgeon. Who came and explained that hemorroids are extremley rare in children, and that rectal prolapse is usually associated with aging. But as Jake suffered a high blood loss, the sureon wanted Jake to be seen by the lead surgeon, Who came and was just lovely, made Jake feel really relaxed, and he explained at the moment, he agreed that in both possible cases it is rare in a child, but as the blood sac as gone back in to the bottom, with surgery he wouldnt be able to get a clear picture. And as the bleeding has stopped, he wanted to wait untill Jake can open his bowels to see if there is any more blood loss. And if there is Then Jake will have to have surgery. They kept Jake in hospital untill saturday night, but he had'nt been to the toliet. We decided maybe he felt to much pressure from everyone to go and was'nt relaxed enough so we said could we take him home, and as we able to get back to the hospital they allowed us to fetch him home. So we were given laxativs for him to take to help soften his stools so he would feel easier going, But we are now 08.36 monday morning and he still hasnt been. He is terrified of going, he keeps crying and everytime he even pass wind he wants me to check for blood. Im hoping that today we have some luck at getting him to go. And that it is all okay when we do, as it will make Jakey feel alot easier. So as for now Jakey is house bound untill futher notice.

Hard to say today but in the words of Jakey Bee Happy

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