Roo's Journey...
I thought I would make a blog about my little boy to keep a record of everything that has gone on in his short life. Reuben is my youngest child, I have two older boys Leo & Lucas who are completely healthy and "normal". When Reuben was born we had no idea of the journey we had in store for us all. Reuben came into the world at 230pm on the 12th November 2010 and was healthy so we were sent home within 6 hours of his birth.... the first 11 wks of his life passed in a blur of feeds & nappy changes!! When he was around 6/7 wks Warren and I both noticed that his head seemed "big" but thought that was normal as some babies look like that they have big heads... as the weeks went on I became concerned about how he couldnt support his head so when he had his 6 wk check at 11wks old ( they were very behind in our area) I mentioned this to the HV... she then measured his head and looked at the red book... shook her head and remeasured Reuben's head... she then proceeded to say that his head measurment was off the charts and that she was very concerned... we were ushered through to the doctor who checked him all over and said that they were concerned that his head lag was not improving and his head growth was alarming so we were to be referred to hospital... I came away from that appointment terrified and worried about what was going to happen and worried that there was something seriously wrong with our little boy...
Soon after we got an appointment to see a paeditritian at the Sick Kids to see Reuben... after a lot of questions and examing Reuben she decided that he needed an ultrasound scan of his brain.. the first scan didnt show much so they wanted him to come back a month later... the 2nd scan showed that there was no fluid around the brain which was the concern so that was a relief to hear but it still left the question of what was causing his accelerate head growth and delay... We were then referred to genetics department and Dr Lam was really good, asked loads of questions, examined Reuben and decided on a load of blood tests and an MRI scan of the brain.
The MRI scan showed that Reuben has non-specific white matter changes in his brain which they cannot explain why he has those. All his blood tests have come back negetive for all the common syndromes and disorders so we still do not know what is wrong with Reuben... the not knowing is awful as they cant tell us what is in store in his future - will he get better or will he get worse? We have so many questions and yet no one can give us any answers... Dr Lam has put us forward to join the DDD Study where they will examine Reuben's DNA along with mine and Warren's to see if there is anything abnormal in his genetic make up... The consultant is confident that we will get answers from this study so we have a bit of hope that we will eventually get a diagnosis... The only downside to the study is that it will take a year before we get any results so its going to be torture waiting and wondering if they will find anything but hopefully the year will pass quickly and we will keep occupied by getting on with our lives...
The only diagnosises we have at the moment is Global Developmental Delay, Macrocephaly & the white matter changes in his brain... We have been lucky as we get great support as we have the community paeditrican, genetics, neurology & the special needs unit where we go once a week to the playgroup and in January Reuben will start going to the early years room for 2 sessions a week to help with his development...
Now a bit about Reuben.... He is now 20mths old and has only been crawling for 4mths now... He is non verbal and cannot communicate at the moment... we have been trying signing for a long time but so far has not picked it up but we will keep perservering in the hope that one day he will learn and understand signing as its my dream to be able to communicate with my son... His understanding is poor but slowly improving ... But apart from that he is the most happiest wee boy I have ever known and his smile just lights up the whole room... When he laughs, you cant help but laugh with him...the sound of his laughter can really cheer you up on a low day and makes you feel so warm inside...
Warren and I are so proud to be Reuben's parents along with his brothers and we have gone through a whole range of emotions - devestation, worry, sadness, upset, anger, resentment & asking questions like "Why Reuben?" and so on... but despite everything we cannot imagine life without him around us all... We are all so proud of him and of how hard he has tried to progress over this past year....
I will update this blog whenever I can....
Soon after we got an appointment to see a paeditritian at the Sick Kids to see Reuben... after a lot of questions and examing Reuben she decided that he needed an ultrasound scan of his brain.. the first scan didnt show much so they wanted him to come back a month later... the 2nd scan showed that there was no fluid around the brain which was the concern so that was a relief to hear but it still left the question of what was causing his accelerate head growth and delay... We were then referred to genetics department and Dr Lam was really good, asked loads of questions, examined Reuben and decided on a load of blood tests and an MRI scan of the brain.
The MRI scan showed that Reuben has non-specific white matter changes in his brain which they cannot explain why he has those. All his blood tests have come back negetive for all the common syndromes and disorders so we still do not know what is wrong with Reuben... the not knowing is awful as they cant tell us what is in store in his future - will he get better or will he get worse? We have so many questions and yet no one can give us any answers... Dr Lam has put us forward to join the DDD Study where they will examine Reuben's DNA along with mine and Warren's to see if there is anything abnormal in his genetic make up... The consultant is confident that we will get answers from this study so we have a bit of hope that we will eventually get a diagnosis... The only downside to the study is that it will take a year before we get any results so its going to be torture waiting and wondering if they will find anything but hopefully the year will pass quickly and we will keep occupied by getting on with our lives...
The only diagnosises we have at the moment is Global Developmental Delay, Macrocephaly & the white matter changes in his brain... We have been lucky as we get great support as we have the community paeditrican, genetics, neurology & the special needs unit where we go once a week to the playgroup and in January Reuben will start going to the early years room for 2 sessions a week to help with his development...
Now a bit about Reuben.... He is now 20mths old and has only been crawling for 4mths now... He is non verbal and cannot communicate at the moment... we have been trying signing for a long time but so far has not picked it up but we will keep perservering in the hope that one day he will learn and understand signing as its my dream to be able to communicate with my son... His understanding is poor but slowly improving ... But apart from that he is the most happiest wee boy I have ever known and his smile just lights up the whole room... When he laughs, you cant help but laugh with him...the sound of his laughter can really cheer you up on a low day and makes you feel so warm inside...
I will update this blog whenever I can....
Reuben sounds just like my boy. Big head, global developmental delay, no speech just sounds but an infetious sense of humour and laughter. Mungo is now 16. Please get in touch if you would like to know more about our journey. Best wishes. Jessica
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