Hi all just a quick update, things have'nt been too great latley. Jake hasnt been very well. His blood levels had started to drop again, so we were starting worry alot. He has also lost of weight he now weighs 15kg. so he has lost 3kg in the last 3 month since his last weigh in. He seems to be having peek moments whenhe seems to have lots of energy and times where he has none, he pushes himself at school to do everything but exhausted by the time we get home  he seems to love being back with his friends through and its also normalitly in his life too which is really good.. It's really nice they had all done him lovely pictures and then the teacher had asked each child for there message and she wrote it on for him to read. We have just taken them all to have them framed. A lovely reminder for him to look at and see how much his friends and teachers love hm. His blood level has levelled off again and was maintaining at the last check up. But luckily we are back to going to the hospital every 2 weeks again, and not every week.
At the moment in time Jake isnt eating or drinking very much again, And 3 week ago we rushed Jake back in to the hospital with the pain he just couldnt cope anymore. They have fitted Jake with a ng tube to help us get fulid into him and to get his movicol in him too, because yes he still hasnt been to the toliet either. But the surgeons are still holding off, they are going to review again on the 1st march and hopefully Jake will beable to have his ng tube removed then too. But I will update at when we know more. It has been a crazy time for us all. I will keep updating when I get a spare moment and hopefully at the end of the week with some good news, I know we are due for some. I mean how much bad news can we keep getting. Within 1 week we were told Jakes sister was completley deaf in 1 ear, then jakes bloods were dropping and then the icing on the cake was that the stem cells werent a match. Definetly a conversation stopper. I think I can understand why we dont have many friends left. Everyone has been so great and supportive, to us and still are, but at the moment I'm feeling like I'm putting on people to much. And its taking all my strength to keep going.And then  Jake asked me the other day about mums dog star, and could we go get her back, so we can take her for a walk, and I had to explain that she got poorly and went to heven, So he asked me if he was going to heven because he was poorly. It hurts so badly, because hes a little boy who has been through so much this past 10 month and yet he is still smiling so amazingly. But we hold on to all the good days and pray they keep coming. But for the moment Jake seems to be good, he is getting very tired more often. But we are back on wednesday, so please fingers crossed that we get good news. Will update after his appointment.
In the words of Jake
Bee Happy