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

Some Good Some Bad

Hi, well it has been eventful since our last post, back and forth to the hospital. Jake was seen again and his blood has dropped by a full 2 points in a week, which is a big drop, but on a plus note he doesnt seem to bad in himself, he is sleeping loads more, and feeling pain in his body now when resting if he over does things, and trying to get him to slow down is impossible, as when he gets a burst of energy he wants to use it all straight away. So as for now jakes predisolone isnt being reduced anymore. We thought we were doing so well too. but we have had a good 6 weeks where he has maintained so that was all good. Jake has had his x-ray on his tummy and there is no blockage there its all nice and soft, but yet he is still only going to the toliet in his sleep in his big boy pants, and yes it is still just runny, It has now been 35 days since Jake has actually been to the toliet properally. So now we are at the stage where we are waiting about to see what happens they have reduced the movicol to 6 a day to try and let it thicken up, but if he stops going completly then we have to up it to 10 a day. Very confusing, I know, but the lady who we have seen over this has been very helpful, and is only at the other end of a phone. She is also going to speak to the original surgeon we saw when jake was first admitted for the prolapse, so hopefully when we go to Jakes next appointment on the 1st nov 2011 we will have a clear idea of how things are going to proceed. We feel like were back in the limbo stage where we dont know whats happening, and its a horrid feeling to have. So for now there isnt really much to report, other than keep fingers crossed his blood goes up, And his ezcema is back alot worse too, I dont think its something we have mentioned before in his posts as we have had it under control and maintained during alot of the time, It always flares up with his transfusions, and it has been easy enough to handle, but its now all the time, he is so itchy and sore, so we are now back on with with the full on treatment, for that creams 8-10 times per day, and wraps during the night, which is difficult with the pooing at the moment. His ezcema was a full time routine day by day, and worked into a daily rountine for him, and he doesnt mind so much having his creams on, luckily for us. Plus we didnt stop his routine at all even when it was looking clear, except for the wraps on a night. So it isnt really an adjustment we need to make. I just wish that I could take it all away for him, I hate having to watch him get so upset. But for now all I can say is thank you all for your support and will update when we have more news.

Bee Happy

Jake and all that goes with it

To start hi to all my followers and friends who keep up to date with this. We thank you for following. Well since our last post we were off to see the surgeons. And I think we had mentioned that Jake had been to the toliet with dihearrea and he has the prolapse again. Well it wasnt dihearrea at all it what they call fecal overflow. And jake has it bad, and the smell is horrid, it smells like sewage back up. So Jake hasnt actually now been to the toliet for 26 days. The surgeon that we saw as an emergency just dismissed us, he had'nt even read Jakes file, he was uncertain why we were there, and dismissed us saying will see him in 8 week see how he goes, and then told us to explain to Jake the it will happen again its just one of them things. Well as you can understand I wasnt impressed not at all, We were treated like rubbish, after all we had been told while is was in hospital about it being rare to happen to children and that it would need correcting if it happened again, then to see this person to be told yeah it will need seeing to but hey leave him 8 week see how he goes, it made my blood boil. So we went to see Jakes doctors who were great and very understanding about it all. They examined Jake and said they could feel the blockage, and they really needed him to go to toliet before anything else could be done. So they increased his laxativs again to help him get the flow going. But Have advised us that if by wednesday he hasnt gone then they will have to do something, but because Jakes not in pain or vomitting from it yet we have time to play with to get him to move his motins himself. So thats that for now, As for his bloood count he is still maintaining so the meds are working well for now so that is good. They have reduced his dose again we are now down to 5mg aday of predisolone, and his weight is coming down quickly. just fingers crossed he keeps maintaining. So this time its good mixed with the bad Im afraid to say. Jake was rushed back in to hospital on saturday evening as he couldnt cope with the pain any longer, they say the blockage is causing the pain, so they told us to keep on top of giving him pain relief, and to double his dose of laxativs everyday. To help him. They said for us to stay in and he can be monitored, but we were also told we could take him home, so home we came, he is more comfty at home and may even go to the toliet. So today Jake is on 9 laxativ's 8 yesturday and 6 the day before and that isnt even including the other laxativs they gave him last week which he takes 10 mls of too. And still no toliet action. Tomorrow we are back at hospital so who knows what will happen. But I hate having to listern to my baby cry from the pain, the terror in his face as he knows what may happen. I wish I could have it all for him., He should be in school making friends and doing the same as everyone else. But he is not and the bestest friend he has his big brother who, throughout all this has been strong and grown up, and a wounderful brother to Jake. Me and his dad are the proudest parents in the world to have such a caring and thoughtful young man as our son. Who maybe sometimes seems overlooked because he has been so grown up about all of this, he is my saviour, And I feel so lucky to have my boys and wouldnt change them for the world. Times like this show you the true colours of people and family that will always be there. Not only for me and my husband but for our eldest son too. Because these people are the ones that laugh at you when you fall over, but are the first to hold their hand out to help you up. And there isnt enough ways to say thank you. You keep us strong and you help make everything bareable. You hold our heads up when we cant. Our whole world had been turned upside down, and yet your still standing there with us. So I thank you again for truely being you. xx

In the words of Jakey Bee Happy

will update when we can. xx Thank you all for support.

Appointment catch up

Hi all, Well wednesday has been and gone so that means Jakey has had his appointment. Jakes blood has dropped to 10.8 in the 5 days since he has been out of hospital. But this is still a good number for Jake as we all know by now that he does'nt usually go higher than 8. He has had a late response to the predisolone which is what is keeping Jake maintained. So on the blood front he seems to be doing well. He is a little more tired than usual and soesnt want to do much but he is holding on. As for the other situation well thats a different matter. On wednesday Jake was on day 6 of no poo action, So between Jakes doctors and the surgeons they increased his laxativs, to help get him to go.But if he had'nt been by Monday to call and see what the next step would be for him, as the surgeons would want to see him. So Jake has been on the twice aday laxativ, and on saturday Jake started with the runs and all was clear, he was so scared to go to the toliet we were letting him go in his big boy nappies which we got for him. And he seemed fine, Then as the runs started to increase more we managed to get him sat on the toliet. We sat with him and read his books and talked loads so he didint feel so scared, And we thought as it was runny it would be so much easier. But we were wrong, it has happened again,  So Jake was admitted back in to hospital on saturday. Jake was terrified he even struggled to have his blood taken, which he does now with ease every week with his fav lady. They said as the bleeding had stopped and if Jakes bloods were okay we could take him home. And luckily his bloods were fine they were 10.7. So we were allowed home, and now were waiting on the surgeons decision on how he wants to proceed. The worst part of all this is Jake was so scared to go to the toliet, And I told him not to worry that everything was going to be fine, and I was wrong but we needed him to empty his bowels and he was holding it in, his brain switched his body off from going but the laxativ's won through and in the end 9 days later they won. So we are back to square 1. So hopefully we will have a decision today on what they want to happen with Jake, and not leave him too long.

So in the words of Jakey
Bee Happy

And will update as I can. xx

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