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

Sorry Its been awhile

Well let me start by saying happy new year. XX Since our last post things have been alittle more than hetic for us. We had our daughter  Harriet-Jade weighing 6lb 13oz on the 23rd november 2011, by elective c-section and they harvested a good viable amount of stem cells from the placenta and umbillica cord sucessfully. And they have been sent off for testing to see if they are a match for Jake, in the meantime Jake has been so good his blood has been mantaining at a steady level, and we have been and seen the surgeon about his prolapse as now Jake hasnt been to the toliet for 3 months, he is still only releasing his bowels while he is asleep. At the moment the surgeons want to hold off doing anything, they are going to arrange for Jake to see someone who will hopefully help him go to the toliet, he is still on a large amount of the movicol, and they have now prescribed him a stronger laxativ, but he still holds on till he is asleep. But other than that he has been okay, no transfusions for awhile. Jakes appointment was the 22nd dec, with the surgeon and then we saw his consulant for his DBA after, so we got good news that the surgeon wants to hold off still for awhile and we will see him again in febuary, and take things from there, as they will try and hold off as long as they possibly can with him having the DBA. And then not so good news from the consulant Jakes blod has maintained again, which is obviousally great news, but she has had the results back from the stem cells and it is very sad to say that they are NOT a match for Jake, we did know and they did warn us that there was only a 25% chance they would be a match, which meant a 75% chance they wouldnt, it doesnt make it any easier, as I really believed that it would be, so my heart is breaking alittle bit at a time, I feel like everything is falling through my fingers alittle like sand., I think that week must have been the week from hell, along with finding out the stems cells are not a match, We had, had Harriet in hospital as she had bronicitilitis and was on full on oxygen for 3 days and in hospital for 5 days. being fed through tubes, we did get home from hospital though on christmas eve, and had a wounderful christmas day with our amazing children. Harriet had also failed her hearing test just after having her in the hospital, so we were booked in for retesting on the 21st dec, and she failed the tests again, they did do more intense testing, and still no response for her right ear. So we were told there was a high possibilty she was deaf in her right ear. She was booked back in for the 4th january same day as Jakes blood check up. Harriet failed the testing again, and we were told that the baby ear specialist would explain fully in detail at our appointment on the 5th january all the findings from the tests. after her appointment at 1 hospital we dashed over to the next for Jakes appointment, Good news again his blood has maintained, but his bone amrrow is slowing down, which isnt good news, so only the next couple of weeks will tell if its just a glitch as he may have had an infection, he has been in uncontroable pain and struggling with weeing its been really hard for him at the moment, or weather he is starting to go down hill again. So all fingers crossed. As for Harriet the speacialist baby ear doctor has confirmed that she deaf in her right ear, he says her left is good, so she will be able to develop normally, and he will see her in 3 months and discuss what will happen next. it feels all out of sink at the moment, I feel like the whole world is spinning fast and im going really slow, but I feel everything inside rushing through my head as we have so much on and so many appointments to contend with, I know things will slow down, and everything will become easier again, and we get through it just like before. So to say that 2012 was going to be our year, it hasnt kicked off to a good start has it. But like they things can only get better. And I know in my heart that they will. xx So I would like to thank you all for your continued support, and all the support you have given over the past 9 months. I will update after our next appointment on the 18th january and hopefully with some good news.
so like always in the words of Jakey
Bee Happy