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

Our Little Super Hero

Hi everyone, well as you know its wednesday and Jakes usual trip to hospital, Well we got some more good news today, Jakes blood was 11.4 which is amazing. His hb has only dropped by 0.2. So we are now on week 3 without a transfusion, which feels amazing and a really nice break for Jake too. Meaning they are holding off on taking his bloods for more tests untill he is ready for his next transfusion, so then he is only needing 1 canular fitted. They have indicated today that Jake maintaing this week could be a late response to the meds, which would be great, but they have lowered his dose of predisolone from 17 and half down to 10mg a day. But they also mentioned that it could be that the transusions are maintaining him longer, which would also be good. This weeks appointment was a nice and short one, it was great to be and out, alot quicker than usual.
Jake is in his second week of school, and seems to loving it, he seems to settling in well, he is exhausted and sleeping loads once home, but for now he is enjoying it. Its nice that he is getting that normality in his life too.
He is still nice and chubby and his appitete does'nt seem to slowing down at all, yet. But they do say once he is weaned off the predisolne his appitete will diplete. And his weight will go back down. But for now he is loving his food.
We have noticed tonight though that he is looking a little yellow, which he didnt this afternoon. So will be keeping an eye on that. As we know how quickly Jakes levels can drop. So for now thank you for following Jakes journey and will update soon.

In the words of Jakey
Bee Happy

Sorry for the late update everyone

Hi well as you all know jake was back in hospital and had another transfusion, And then as always we go for his blood check up, and on wednesday last week it was good news, YES I said good news, His levels were good they were 11.6 the highest they have been in 4 months. I know they are still not within the normal range but we were close. So they have given us 2 week off, Before Jakey has to go back. So then they have started to slowly decrease his meds predisolone he has been drooped by 2.5 so he is now on 17.5 a day instead of the 20mg. And will keep reducing the dosage till Jake is off fully. As this happens his hungar will decrease too and the amount he drinks, so instead of our little chubby boy who looks really healthly at the moment, we will start to see Jakes weight decrease too, and his colour fade. Well we are back on the 14th and he will have another transfusion, if his levels have dropped low again, and he will be having a new lot of bloods taken. They discussed at the last appointment about Jake having his kidneys checked, and booking him for another bone marrow test. They want to keep on top of everything. They are really good and very supportive of us all. And its really nice to know. He is starting to look alittle tired around the eyes but he is holding up really well.

On another good note, YES I said another good note, Jakey got to start school yesturday and he loved it. The school are great too, and Jakeys TA seems really nice. He looks really grown up in his little uniform,  and loved telling me all about his day, he even drew my a picture for the fridge which was lovely.
I must admit it is really hard letting him go, I know it will be good for him as he gets that interacting with other children, and it brings some normalitilty in to his life too. But it wont stop me worrying.
Jake didnt have the best night, after his first day, he was shattered like most children after there first day, he was asleep early and kept waking throughout the night needing cuddles and saying his legs and arms hurt. And was extremly warm and clamy too, It found it very hard to settle fully. But it could have been worse. All in all Jake is amazing, and very strong and I hope he loves school, no matter what weather he can make it 2 days aweek or 4. And no matter what its nice to know that the school are there for us aswell as Jake.
So I will update next week when have had his appointment. unless before he needs to go in. But we have had a good week, fingers crossed for another one. xx

In the words of Jakey Bee Happy