BiographyLewis was born in June 2008 after a rather rocky pregnancy. All seemed fine, in our eyes, until he was 4 months old when he had his first seizure. It was our first trip of very many to the children's hospital in Southampton.
From that point on Lewis continued to have seizures and apnoea episodes which all required a trip to hospital. Just after his 1st birthday he was taken in to hospital due to refusal and pain at feeding. On 27th July 2009, he was taken into theatre for the very first time and fitted with a PICC line. This gave his gut a chance to rest. On 7th August 2009 he was taken for his first MRI of the brain and on 14th August 2009 we were told he had a significant brain injury. They didn't know how this would affect him but seeing that he couldn't sit, roll, crawl it was obvious the effects would be huge.
In November 2009 he had his PEG-J tube fitted which meant we could bypass his stomach and alleviate some of the pain.
In March 2010 he was admitted due to severe weight loss and had surgeries 3, 4 & 5 within a 4 month period. 16 days before his 2nd birthday we were told he had Dystonic Cerebral Palsy and Epilepsy and was told that they didn't expect him to live beyond childhood.
This was devastating news but the smile on his face was so bittersweet.
Over the next 3 years, Lewis bounced in and out of hospital with admissions ranging from a few days to 3 months. December 2013 is the time we all remember the most. 23rd December he was admitted to hospital really poorly. Between 23rd Dec and his discharge date of 08/08/2014 (8mths later!) he went through numerous operations, procedures, blood transfusions, new diagnosis' and lots of tears and laughter. It was an emotionally hard time as mum (Trish) was at the hospital 24/7 with Lewis meaning Dad (Paul) was at home with Lewis big brother Adam. Adam and Lewis are truly the best of friends. There has never been any malice shown toward Lewis by Adam and they just giggle and laugh together all the time.
Lewis has to be, by far, the happiest little man I know. He grins from ear to ear and laughs from deep down in his belly for the best chuckles. He eye points and communicates through his eyes.
Right now we are facing 2 major operations for Lewis. 1 is to have his PEG-J tube resited as it's bumper has become stuck. It means he will have to go on to TPN (Total Parental Nutrition) & could be in hospital for months.
The 2nd operation is much more scary and has us torn in two. He needs to have surgery to correct a serious scoliosis and rotation of the spine. Not only could this leave him in hospital for months on end but could cost him his life. We have to way up all the factors,,the pros and cons of for and against, we will have to use head over heart. He will spend time in PICU and be in a lot of pain post surgery. We have to weigh up quality of life overy quantity and it's made all the more harder when he gives you a big goofy grin and laughs at you!!
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