18th June Paul's 40 th birthday!

Well another week has passed. Another week of extreme emotions, as we were bystanders watching Harry go through this awful veno occlusive disease. Harry himself has been very poorly and mainly bed ridden, until this weekend, whereby he has perked up and continues to go from strength to strength. Harry has been described by the nurses on the ward and even his consultant as the perfect patient! A very highly regarded compliment. This is because although Harry has been so poorly, he has been compliant. Via getting on the scales twice a day to be weighed, his fluid retention could be managed effectively. Via not drinking more than he was asked to, he has managed to keep his fluid levels where the medics feel comfortable. Sue his consultant feels he has come through this very well, as parents we are not so sure, but then, if Harry had not been compliant, his tummy would have swelled more, which is common and intensive care could have been our destination by the end of the week, rather than seeing Harry get up out of bed and score 30 goals in the basket that the physio has lent him. Harry is the model of what empowerment means. How if you spend time discussing with the patient why and what is happening and what they need to do to get better, then Harry has control over making a difference and a speedier recovery. Such as being in control of measuring out his 20 ml per hour fluid intake. Making the decision to have 10 ml of orange and 10 of elderflower cordial, that his beloved Grandad makes! He listens to the doctors and takes on board what they say. On Friday he got told by the doctor he could drink what he liked, but on Saturday he would be back to drinking measured amounts as his intravenous feed would be increased. When it came to Saturday and I just gave him the cup to drink out of, he said no mummy we have to measure it today! As he has been bed ridden much of the week the physios saw him. They wanted him to wear these funny boots to stretch the muscles at the back of his legs. however, he refused to wear them. Daddy decided Harry could get up and walk round his bed several times 3 x day instead of wearing these boots and so he has been keen to do this. In fact last night he ran up and down the corridor a couple of times outside his bedroom, but still with special clean air, to exercise! Harry has incredible determination and won't be laid flat out for long! So he is making great progress. Home next week could be a possibility. however, not getting too excited as his immunity is very low and an infection could strike at any time. When at home due to his immunity being low, even supermarkets are out, due to the risk of catching something from others. So once Home I do hope the weather is fine as there are lots of things we can do outside, where germs are not spread so fast. We also need Harry's platelets to stabilise as currently he he is needing a transfusion every other day. This will hopefully improve to 3 x week. Though that still means frequent trips to LGI. We have a date next week to take Harry for his first assessment for radiotherapy. So even before we have a discharge date from here, the next leg of the treatment plan is on the horizon. It's been Paul's 40 th birthday today and we had a buffet lunch in Harry's bedroom. Harry and i put banners up to decorate his bedroom. Callum came for the festivities and this is the first time Callum has seen Harry in 4 weeks. It took about an hour for Callum to thaw, but once he did the boys were having great fun. My search for suitable service provision continues and I am awaiting a multi disciplinary meeting to see what can be offered. I think a mish mash of services, therefore lots of different people for Harry, but until we have the meeting I cannot ascertain exactly what. So following that I will have to study what is on offer and see how it can best fit us. I did meet with my new social worker, but was less than impressed when told I could have 3 hours respite a week, but not if I am to use this to go back to work, as social services would see this as supplementing my child care costs! I am still mad at the system, how disjointed all the departments are and that means disjointed budgets. It doesn't matter that if I did not work at all, that I can claim a bit more in benefits, thus not being a tax payer, however via working a bit I need a few quid spent on services, whilst Harry cannot go to nursery due to his health needs. What is best for the economy, me working, paying taxes and throwing a few quid at me to enable a service to be provided that meets Harry's needs until he is fit enough to go to nursery again. Also via keeping me working I am more likely to continue to do so and up my hours when I can, back to my contracted hours. Via not working, then it can be hard to get back into the workplace when able, thus being a greater burden on society generally! However, I cannot fight the system and I know that. So have parked some thoughts and will just wait and see what is on offer. The main thing is that Harry is on the up and to see happy smiley Harry makes us all smile with him!