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