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
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