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Harry – Our Journey

January 14, 2013

 

Today I decided it would be good for me to start a blog.  Note the ‘for me’… I’d like to say I was doing it for a greater good, to raise awareness, or to help others, but no, I’m doing this as a form of therapy for myself.  An outlet I suppose.

When I decided to start it my first thought was, where the hell do I start?  How to I explain how we came to be where we are today?  Then I realised I couldn’t.  The best place to start is from today, the here and now.  Those who don’t know our background with Harry could perhaps refer to my husband’s blog ‘Ups and Downs’ at www.harrysgame.wordpress.com, and my own one off blog at www.livvi1205.blogspot.co.uk.

 

As a result of what happened to Harry after his bowel surgery his Daddy and I are now facing the stark reality of having a one year old boy with an acquired brain injury.  The single toughest, scariest thing I can ever imagine having to endure.  Don’t get me wrong, I am grateful everyday for the fact our little soldier survived his horrendous ordeal.  He’s here, and we have hope, for which I know we are truly blessed.  But he is no longer the happy, active little boy he was.  And at this stage, we don’t know if he will ever be the same again.  He now has epilepsy as a result of the injury, the seizures are mostly controlled but we still see signs of them from time to time and live in fear of their return.  He also has ‘Cerebral Visual Impairment.’  This means that his eyes are healthy and can see, but his brain can’t process all of what he sees.  We have to feed him through a naso gastric tube, as he has forgotten how to feed orally, and he has very little mobility left, he’s barely able to hold his head up at the moment. But worst of all, he doesn’t smile anymore. I keep thinking it’s coming back but then it disappears again.  I dream every night of that little smile of his.

When Harry was diagnosed with Down’s Syndrome I could barely move for offers of support, comfort and hope from various organisations and other parents.  But this is different.  Every child who survives a brain injury is completely unique in their recovery, I’ve read wonderful positive stories of recovery, but the injury is always different, the child is normally older, or sustained the injury at birth, and really, there is just no comparison or comfort to be found.  Everybody keeps telling us we just have to wait and see what Harry’s future will bring. 

Waiting isn’t exactly one of my strong points though.  Never has been.  So I have immersed myself in information about the human brain, and how it recovers from an injury.  From what I can gather, age is definitely on Harry’s side, there is a degree of neuroplasticity which allows the neurons in his brain to create new pathways and reconnect.  The damage can never be undone, but the brain can be taught to compensate for the affected areas.  So that is what I am clinging to.  I have started taking him to a private neuro physio twice a week, as the neurologist has warned us Harry may never be mobile… I can’t sit by and face that as a reality for our boy, so intensive physio seemed like the best place to start.  We also have a community physiotherapist who is funded by the NHS but she can only come once a week and that just wasn’t going to be enough to meet Harry’s needs.  We also have a community speech and language therapist, but her time is even more in demand so I will be looking for ways to improve on that therapy too.  I have come across an organisation called Brainwave, who following a two day assessment, provide exercises and techniques to be followed at home, building on the theory of neuroplasticity.  I have a lot of hope that this will be something we, as a family, really get a lot from, and more importantly, that they will help Harry start to become the little boy we once knew.

So here we are, about to embark on a journey of completely unknown territory.  It breaks my heart that we have to take this road, and we ache for the life we had before September 2012, and our healthy bouncing 8 month old boy. But this is what life has presented us with, so together, as a team, our family will deal with it, and whatever twists and turns it may bring.  And this blog is where I will try to document the journey.  I should probably also mention that I am 33 weeks pregnant, expecting a little sister for Harry in early March! I will of course share my experiences during that time, caring for our brand new bundle of joy alongside helping Harry through his recovery… time allowing that is!!

Although, as I said at the beginning, I have started this blog mainly for selfish reasons, please do follow and share it, as I hope and pray that I will be able to share a lot of positivity as Harry does achieve certain milestones, and who knows, maybe someone else out there somewhere is experiencing something similar and could take some hope from this blog one day, or even just get in touch and give me some hope.  Thank you.

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From → Personal

25 Comments
  1. AimeeMulholland permalink

    Livvi, What an amazing blog.. Made me cry my eyes out! You should be a proud Mummy as you are..:) We are always here for you all+you’re amazing little boy,My best friend! Love you all loads xxx

  2. Jayne Turner permalink

    This is a beautiful blog. I don’t want to patronise but you should be really proud of yourself. Not just for this wonderful piece you’ve shared but for everything you’ve talked about x

  3. Made me cry, I just know good will come of this.

  4. Claire Allott permalink

    Harrys beautiful little smile has touched me so many times and i will pray that its not long until its back in full force. Sending lots of love and hope to such an amazing family xx

  5. Sending lots of love to such a beautiful little boy! x

  6. Anoop Singh-Best permalink

    What a lovely post. By all accounts, age is definitely on his side. And when neurons gets damaged, the surrounding neurons grow extra dendrites to compensate but this takes time. Wishing you all the best with your son and congratulations on the expected arrival of his sister x

  7. I have just read your blog from a link on a mutual friend on facebook and i am totally moved by your story! I am in my 2nd year at university studying to be an occupational therapist. I noticed within your blog you did not mention occupational therapy. I have attached a link at the bottom to give you more information about what OT’s do with children as many people dont know what we do! . If you feel they may be able to help harry you can get a referral from your GP or you can pay private.

    Good luck with your pregnancy and i hope that Occupational Therapy can assist Harry in his future development

    Nicki

    http://www.cot.co.uk/sites/default/files/marketing_materials/public/helping-children-to-develop-and-thrive-leaflet.pdf

  8. Harry is a beautiful little boy I just want to hug him he reminds me of my little boy when he was that age also very sick and born with downs sydrome at 28 weeks in hospital for months with various problems now he is 6 the most wonderful boy Charlie in every way yes it’s not an easy journey but one you have to take because you love Harry, and ye are all he has do take all the support you can get you need to it will amaze you how good some people can be Best of luck Harry you a star 🙂

  9. Grandad’s little man is so lucky to have Daddy’s little girl to look after him. I love you so muchxx

  10. Margot permalink

    Remember reading an amazing book about a little boy who visited BIBIC (british institute for brain injured children -i think) in the west country. they use “patterning” and various techniques to improve the childs life. Assume they are still about, maybe worth googling? I wish you well with your “little man”, and hope things improve for you all. xxx 🙂

  11. Bernadette McKenzie permalink

    what a beautiful boy you have and congratulations on your pregnancy. You’ve had quite a journey, thank you for sharing, it sounds as if Harry has fantastic parents. I wish you all the best for Harry’s recovery and the arrival of his little sister x

  12. kayleigh permalink

    my baby girl also has wot ur little harri has after heart n bowel op shes just turned 1 x

    • kayleigh permalink

      r u on facebook i would lije to get in touch xx

  13. downssideup permalink

    I hope the blog is cathartic and strengthening for you, but I could not have any more admiration for you as an incredible couple. You have come so far and will bravely face what is yet to be discovered with grace and love.
    Have you heard of BIBIC also? Will check out link.
    Harry is utterly gorgeous and looks to me as if he has a few surprises up his superman sleeve.
    And congratulations. What wondeful news for you all. Don’t forget to nurture yourself x

  14. Lisa permalink

    A very well written blog thank you so much for sharing, are you on Facebook or a member of future of downs I really think that this blog will help so many other parents with DS x

  15. Hi Lisa yes I’m on Facebook, search for Olivia Nixon and my profile pic is the same picture of Harry as the one on this blog. Thank you all for your kind words xx

  16. helen permalink

    Livvi .. any support you need you know you can always ask i am down the road .. you are quite an inspiration and the best mum that Harry could ever want and his little sis when she arrives ….

  17. vashti permalink

    Livvi, your strength never ceases to humble me xx so proud of you xx

  18. Charlotte Liddell permalink

    So proud of you Liv, I know I keep saying it but you are my inspiration, love you all so much can’t wait to meet my new niece in March! Lots of big hugs to you all xxxx

  19. Andrew Porter permalink

    Well done Livvii, You’re a truly amazing Mum, Love Andrew & Kathy x

  20. Julie Walker permalink

    Livvi,what an amazing blog! You are a fantastic mum whose strength and love for Harry is truly wonderful. All our love Julie and family xxxxxxx

  21. Tania Tirraoro permalink

    Good luck with your blog. Please look up The Children’s Trust an amazing charity that helps children with Acquired Brain Injury and also runs the Brain Injury Hub site.
    Tania, Special Needs Jungle

  22. Rowan permalink

    Wow! I’m still going to teach him guitar! you guys amaze me! x

  23. Your story has had me in tears.

    Harry’s character sounds just like my daughters 🙂
    Perhaps this may offer some comfort to your family?

    Your story has touched the hearts of many. 🙂

    Member of FOD – Karen x x x

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