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My First Blog

20 Jan 2013

So this is my first blog. I've been reading a blog written by someone I know and I've been really enjoying it. I've been considering writing my own for a while and have finally bitten the bullet tonight and decided to start recording our special journey you. I hope you enjoy reading our roller coaster life and can get a real insight into the way we live.

 

About Us

My names Naomi and my little hero is my son Ethan. We live in Somerset in a little flat. It's just the two of us and we like it that way. My Ethan is a little hero and this blog is about him and our daily celebrations and struggles. Our life is pretty hectic and very hard at times. This is due to the fact that my little hero has a rare genetic disorder - ARX. This condition affects his development and at the age of two he is still at the developmental level of a 3-6 month old. Ethan is the happiest child I know. He has a smile that will melt anyones heart and his infectious laugh fills any empty room. 

 

Where Our Journey Began

My beautiful baby boy was born in July 2010. After a forceps delivery Ethan had to spend a few days in hospital due to low blood sugar levels. For any new parent this is hard as all you want to do is take your precious newborn home. At four days old we finally got to take our new bundle of joy home. Myself and Ethan's dad excitedly took our baby boy home blissfully unaware of what was about to unfold. I was upstairs feeding Ethan and Ashley Ethan's dad was downstairs. I finished feeding Ethan and was just about to wind him when he started jerking his arms and legs on the left side of his body. He stared at me with cold eyes. I screamed for Ash and said to him what's he doing make him stop. I was so scared. Ashley took Ethan and cuddled him. A few moments later he stopped. Little did I know that this would be Ethan's first of thousands horrible seizures. The next day we took Ethan to the doctors for a lump behind his ear. The doctor informed us it was a lymph node and that it was nothing to worry about but what he was worried about was this jerking episode. Ethan had a second one before the doctors and the doctor rushed straight down to PAU (paediatric assessment unit). I have never been so scared in all my life. What was happening to my little baby boy. Ethan was admitted onto the children's ward. Once on the ward Ethan continued to have his jerking episodes which became more frequent. Over the next few days we were in and out of hospital until we were finally admitted properly. Ethan's jerking episodes became worse. The tests began, MRI scans, blood tests, EEG's, lumbar punctures and regular heart and pulse monitorings. Ethan was heavily sedated with anti epileptic drugs. We had a trip in an ambulance to a hospital 40 minutes away for an EEG. Seeing my tiny baby boy heavily sedated and hooked up to machines was not how I imagined my first few weeks of becoming a mum would be. I have never cried so much and felt so scared but at the same feeling a strength from within which kept me going. On the outside I gave off my strong appearance which i still do today but inside I couldn't help the thoughts of whether I would ever get to take my baby home and whether he would actually survive.

 

Those first few days seem such a long time ago yet as I write this they are still as raw as ever. In floods of tears I continue to tell you that after a few weeks in hospital we finally made it home just in time to go and celebrate my cousins wedding day. Such a beautiful day was slightly over clouded by yet another seizure. Once again Ethan was admitted back onto the childrens ward. It was at this visit that it was decided that ethan would be started on a daily dose of an anti epileptic drug called Phenobarbitone. Now home and armed with drugs we started our journey. Ethan continued to have seizures everyday sometimes up to ten a day. He would have a seizure, then want feeding, then would fall asleep then be woken by a seizure and then want feeding again. This would happen over and over again. I was breast feeding and was feeding Ethan hourly. I was struggling so at 6 weeks I decided to put Ethan on a combi feed plan. Ethan had lost so much weight that this lasted a week before he was fully on formula. This helped and Ethan began to be a little more settled and began to put on weight.

 

The End of My Relationship

Things were tense at home. With a very poorly child things were stressfull with regular hospital visits and visits from health professionals. But to top it all off I finally admitted to having mild post natal depression. Ethan was just 3 months old when his dad decided he couldn't deal with the situation and took the decision to leave. I have never felt so alone and crushed in all my life but I knew I had to stay strong for my little man. We soon got used to being on our own and I now know that this was the best decision and has made me a stronger person. 

 

The Next Year

Ethan continued with seizures and the tests continued to find a cause. We began to see a neurologist and later in the year we started the genetic testing procedure. During this time Ethan's development didn't progress at a normal rate. Whilst most baby start to gain head control and begin to smile Ethan didn't gain head control and began to smile a few months later. However Ethan's first Christmas when he was just 6 months old he was extremely poorly and after a lot of nasty seizures Ethan began to loose his first gained skill of smiling. As if our journey hadn't been hard enough this had to happen. My babies smile was taken. He didn't start smiling again for another few months which seemed like an eternity. Whilst Ethan regained his smile and eventually his infectious giggle this was it for the first year. 

 

The Diagnosis

It took until April 2012 for us to get the diagnosis of ARX. A rare genetic disorder which causes epileptic seizures and developmental delay. This is limited information on this disorder. At the age of 2 and half Ethan's development is very limited. He cannot fully support his own head yet, although this Is getting stronger, he cannot sit, crawl, walk or play with Toys properly. Despite all of this Ethan's seizure are more controlled and has a few seizures every few weeks now. Ethan smiles and laughs especially when he is being tickled, watching lights of listening to music. He is a joy to be around and lights up my world every day.

 

Where We Are Now

Ethan is 2 and a half now and although I have told you a lot of information this does not even touch the surface of how brave my little hero has been. Through all he's been through he remains a chilled out little man and takes everything with a pinch of salt. I've given you a quick insight into our roller coaster life but with my following blogs I will give you more of insight into our day to day life. The things that make us tick and the things that tick us off! I hope you've enjoyed this first blog and will continue to join us on the journey of a life time into the unknown!

 

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