I'm really sorry to say that this blog entry is not going to be a positive one so for those who might be reading this while at work, you may want to save it 'til later.
As you know Patrick had his MRI scan on the 18th October. We have now received the results and have a much clearer idea of Patrick's condition.
You may remember back when this all started that Patrick had an MRI done at Poole hospital. That scan showed that everything was normal apart from there seemed to be a little less white matter than there should have been for his age (White matter coats the brain and protects the nerve fibres). At the time they said that this news wasn't that significant as he was so young and the difference wasn't really that much to worry about. They have now been able to compare his latest MRI with the one they took back then and unfortunately the results aren't good.
Not only is there less white matter than there should be but it seems that between the 10 week MRI and now, he has actually lost some white matter. This indicates that Patrick has a degenerative brain condition. What this means is that they think that over time Patrick will lose more white matter and gradually lose motor skills and his development will basically go backwards. Patrick has to go back to Southampton for further tests over the next week to confirm all this, they need to look at his vision processing (how his brain interprets what he sees) and also take blood and urine samples. They are confident that they will be able to properly diagnose his condition and then hopefully we will have more information about what to expect. If they don't get all the answers at Southampton he may end up being referred to Great Ormond Street. We have been told already though that whatever the diagnosis, it is highly unlikely that there will be a cure or any treatment that will stop the condition, and therefore this condition would be terminal.
As you can imagine we are totally devastated by this news and were really shocked. Patrick has been developing really well recently and seems to be gaining skills - not losing them, even Fiona his neurologist said that she was really surprised at the results as she has seen him several times over the last month and can also see that he is getting stronger and more responsive.
Fiona did measure his head while we were there on Friday and unfortunately his head hasn't grown much at all over the last 4 months, this is also an indication that his brain isn't developing and growing as normal.
We can only hope at this stage that he'll prove them all wrong and somehow he'll be fine.
The weeks ahead are going to be difficult as we find out more and we'll of course keep you all as updated as we can.
For now we can only take each day as it comes and continue to try and work at bringing on his development with lots of physio and love. We are trying to carry on as normal and be as positive as we can be. This news changes nothing and everything all at once, it changes nothing in the way that we will care for Patrick and stay strong as a family but it changes everything in terms of the services we will now get access to and the respite care we will be able to use. We are obviously concerned about how this news will effect our other children, in particular Isaac who we will try and protect from the worst as much as possible but also Ashley and Billy as they are old enough to fully understand what may lie ahead.
For those of you who joined us for Patrick's christening, thank you for helping to make it such a special day. I hope you can understand why we didn't tell everyone the news until now, we didn't want Patrick's day to be a sad occasion. We are more determined now than ever to make sure that whatever happens in the future, we make lots of happy memories along the way and Sunday was one special day that meant a lot to all of us.
As you read this and digest the news, especially if you have children yourself, take the time to reflect about how precious all our children are, every hug, every smile and every giggle is a magical moment to cherish. It is so easy to get complacent and take the smallest things for granted. One thing we have learnt is that life is far too short and we all need to make that little bit more of an effort to spend time with family and friends.
Keep your eye on the blog, we will be updating it soon. xxxxx
As you know Patrick had his MRI scan on the 18th October. We have now received the results and have a much clearer idea of Patrick's condition.
You may remember back when this all started that Patrick had an MRI done at Poole hospital. That scan showed that everything was normal apart from there seemed to be a little less white matter than there should have been for his age (White matter coats the brain and protects the nerve fibres). At the time they said that this news wasn't that significant as he was so young and the difference wasn't really that much to worry about. They have now been able to compare his latest MRI with the one they took back then and unfortunately the results aren't good.
Not only is there less white matter than there should be but it seems that between the 10 week MRI and now, he has actually lost some white matter. This indicates that Patrick has a degenerative brain condition. What this means is that they think that over time Patrick will lose more white matter and gradually lose motor skills and his development will basically go backwards. Patrick has to go back to Southampton for further tests over the next week to confirm all this, they need to look at his vision processing (how his brain interprets what he sees) and also take blood and urine samples. They are confident that they will be able to properly diagnose his condition and then hopefully we will have more information about what to expect. If they don't get all the answers at Southampton he may end up being referred to Great Ormond Street. We have been told already though that whatever the diagnosis, it is highly unlikely that there will be a cure or any treatment that will stop the condition, and therefore this condition would be terminal.
As you can imagine we are totally devastated by this news and were really shocked. Patrick has been developing really well recently and seems to be gaining skills - not losing them, even Fiona his neurologist said that she was really surprised at the results as she has seen him several times over the last month and can also see that he is getting stronger and more responsive.
Fiona did measure his head while we were there on Friday and unfortunately his head hasn't grown much at all over the last 4 months, this is also an indication that his brain isn't developing and growing as normal.
We can only hope at this stage that he'll prove them all wrong and somehow he'll be fine.
The weeks ahead are going to be difficult as we find out more and we'll of course keep you all as updated as we can.
For now we can only take each day as it comes and continue to try and work at bringing on his development with lots of physio and love. We are trying to carry on as normal and be as positive as we can be. This news changes nothing and everything all at once, it changes nothing in the way that we will care for Patrick and stay strong as a family but it changes everything in terms of the services we will now get access to and the respite care we will be able to use. We are obviously concerned about how this news will effect our other children, in particular Isaac who we will try and protect from the worst as much as possible but also Ashley and Billy as they are old enough to fully understand what may lie ahead.
For those of you who joined us for Patrick's christening, thank you for helping to make it such a special day. I hope you can understand why we didn't tell everyone the news until now, we didn't want Patrick's day to be a sad occasion. We are more determined now than ever to make sure that whatever happens in the future, we make lots of happy memories along the way and Sunday was one special day that meant a lot to all of us.
As you read this and digest the news, especially if you have children yourself, take the time to reflect about how precious all our children are, every hug, every smile and every giggle is a magical moment to cherish. It is so easy to get complacent and take the smallest things for granted. One thing we have learnt is that life is far too short and we all need to make that little bit more of an effort to spend time with family and friends.
Keep your eye on the blog, we will be updating it soon. xxxxx
