Took Wills to clinic this afternoon. It really was one of those afternoons...clinic ran 2 hours late and then we arrived at Fulham Broadway to find the District Line suspended between Putney Bridge and Wimbledon due to fire - that was exactly where we needed to go!! We had to get a bus to Victoria and then I had to pay out for a train ticket. Don't you just hate that!! You just want to get home. I wanted to cry, I really did!!!
Clinic was OKish - nothing more or less that I was expecting. William's liver blood results have gone up a fair bit. They increased the number of days he has fat in his TPN from 3 to 4 as he wasn't growing very well. He has grown back up to his centile which is great but his liver doesn't seem to be coping with the extra. He is having another liver ultrasound in a couple of weeks and we will keep monitoring his liver blood tests. We are currently going to clinic every 2 weeks and will continue to do so for the time being - I have requested that we go back to Friday mornings as at least I can drop the girls to school, rush to clinic and be home to pick them up. I was expecting to be home by 4.30 ish and was home at 6.30! You can't push your luck (not that delayed clinics and travel chaos are my fault) when you rely so heavily on favours from people.
Apparently, our consultant had an email from Birmingham to say we have a slot for William's transplant assessment 'very soon'. She didn't tell me when but said we should be getting a letter very soon. She is still going to tell them about William's liver issues so it may be hurried up even more. Somehow, I don't think we are going to get a huge amount of notice.
Tuesday, June 17, 2008
Monday, June 16, 2008
A new journey about to begin
am sitting down with a luverly glass of red and listening to the Coldplay gig on radio 1 - What bliss!! Paul has had a rare day off so Wills has been glued to him all day so I have got heaps of work done and now I can enjoy the gig without feeling guilty for what I should be doing. The children are in bed and Paul is watching the footie - ah, luverly (sips wine and enjoys the excitement of 'Life in Technicolour' live...becoming 'Violet Hill')
I wonder if they will play 'Yellow' I always joked with myself that this would be our theme song if Wills got jaundiced. You have to find humour sometimes! Well, William's liver function tests are up a bit at the moment. Compared with some of the children who have severe liver disease, this really is nothing, but for Wills they are up and we are hoping this is just a blip due to all the infections he has had, and not the beginning of a downward spiral. We have clinic tomorrow so I'm sure we will discuss it all. We still haven't heard anything from Birmingham so I am hoping they can chase it up and see if William has a pencilled in slot yet! (Ah, 'In my Place' - one of my total fave songs ever!!!! I think Coldplay are my fave band these days – although The Cure and The Smiths will always be up there)
I am really feeling nostalgic and reflective now. Appropriate for this blog really. Regular followers of my ramblings will know that I have been thinking a lot about all that life has thrown us and how I put all the pieces together. Followers may also know that I am a committed Christian and truly believe that God wants me to use our experiences. Sadly, so many people go through some of the things we are going through. I have been privileged to have the opportunity to share their world and understand, really understand and empathise what they are going through. Chaplains come to the wards and talk to us all and everyone appreciates that (nearly everyone) and draws a lot of strength from what they say. However, they don’t know what it feels like to be standing there in the shoes of that parent who has just been told that their child has to undergo lifesaving surgery that may kill them or that there is a real chance that their child will die before they reach their teenage years. I can give them the hope and comfort that their visitors give but, more than that, when I can say, in all honesty, that I know how it feels for them because I am there with them going through the same. This is central to the Christian Faith as God put Jesus in the same place as the people he was reaching out to so that He could relate to them and empathise with them. I am getting dangerously close to being far to heavy and religious here so I will just take a step back to enjoy ‘Viva La Vida’ – wow, I love that song, I’ve been listening to it over and over the last few days.
Anyway, I have enrolled on a HE Certificate in Theology and Vocation. William starts school in September so I will have a little time, along side my job, to take on a new challenge. I feel I really have to develop some kind of ministry based on what is going on in our lives. I know I could reach out and help people cope with what they are going through and my faith is my rock and what enable me to wake up in the morning with a smile on my face, ready to tackle what the day has in store for us. It is what enables me to go to sleep each night thanking God for something that has happened, even in the most worrying days. So, for me to be able to help others it has to be within a Christian context. For now, I will focus on writing for Christian publications and hope to give some talks as well (so if anyone knows of a group or occasion who use speakers let me know) At the same time, I will carry on talking to parents I meet in hospitals. I will weave more theology into my writing and talking as I learn and develop and who knows where it will lead…
I wonder if they will play 'Yellow' I always joked with myself that this would be our theme song if Wills got jaundiced. You have to find humour sometimes! Well, William's liver function tests are up a bit at the moment. Compared with some of the children who have severe liver disease, this really is nothing, but for Wills they are up and we are hoping this is just a blip due to all the infections he has had, and not the beginning of a downward spiral. We have clinic tomorrow so I'm sure we will discuss it all. We still haven't heard anything from Birmingham so I am hoping they can chase it up and see if William has a pencilled in slot yet! (Ah, 'In my Place' - one of my total fave songs ever!!!! I think Coldplay are my fave band these days – although The Cure and The Smiths will always be up there)
I am really feeling nostalgic and reflective now. Appropriate for this blog really. Regular followers of my ramblings will know that I have been thinking a lot about all that life has thrown us and how I put all the pieces together. Followers may also know that I am a committed Christian and truly believe that God wants me to use our experiences. Sadly, so many people go through some of the things we are going through. I have been privileged to have the opportunity to share their world and understand, really understand and empathise what they are going through. Chaplains come to the wards and talk to us all and everyone appreciates that (nearly everyone) and draws a lot of strength from what they say. However, they don’t know what it feels like to be standing there in the shoes of that parent who has just been told that their child has to undergo lifesaving surgery that may kill them or that there is a real chance that their child will die before they reach their teenage years. I can give them the hope and comfort that their visitors give but, more than that, when I can say, in all honesty, that I know how it feels for them because I am there with them going through the same. This is central to the Christian Faith as God put Jesus in the same place as the people he was reaching out to so that He could relate to them and empathise with them. I am getting dangerously close to being far to heavy and religious here so I will just take a step back to enjoy ‘Viva La Vida’ – wow, I love that song, I’ve been listening to it over and over the last few days.
Anyway, I have enrolled on a HE Certificate in Theology and Vocation. William starts school in September so I will have a little time, along side my job, to take on a new challenge. I feel I really have to develop some kind of ministry based on what is going on in our lives. I know I could reach out and help people cope with what they are going through and my faith is my rock and what enable me to wake up in the morning with a smile on my face, ready to tackle what the day has in store for us. It is what enables me to go to sleep each night thanking God for something that has happened, even in the most worrying days. So, for me to be able to help others it has to be within a Christian context. For now, I will focus on writing for Christian publications and hope to give some talks as well (so if anyone knows of a group or occasion who use speakers let me know) At the same time, I will carry on talking to parents I meet in hospitals. I will weave more theology into my writing and talking as I learn and develop and who knows where it will lead…
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