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You are here: Home / Blog / A Life with Tubes

A Life with Tubes

Published on 24th Mar 2012 by Renata

Another great week of posts were submitted last week for the Define ‘Normal’ blog hop. Lots of great feedback on both facebook and twitter for the posts that were shared as well, thanks to everyone that took the time to submit a blog post and to those that shared the great ones that they read.

This week I wanted to do something different, just to prove that really, anything goes with this blog hop, old posts that you want to dust off, a picture your child drew at school, a photo that you took of the interior of your fridge, anything that says something about what normal family life is like for you. This blog hop really is open to everyone, it’s really just about getting people to connect and identify with other families by sharing the one thing that connects all of us, our strange, quirky, funny, disgusting, weird and glorious differences. Normal is, after all, entirely relative.

I hope you enjoy my submission this week and I look forward to seeing yours (just click the linky under the slideshow)

Please note that this video has since been updated and redone for Tube Feeding Awareness Day. The newer version can be found here…

Click to play this Smilebox slideshow

For more information about the Define ‘Normal’ blog hop have a look at this page explaining all about it. Once you’ve posted do come find me on twitter (#definenormal) or Facebook and let me know so I can share your post for you. Joining a blog hop is a great way to encourage new readers and to discover new blogs yourself. Please take the time to read and comment on the other posts people have submitted.

 

 

Last week’s fabulous entries

Liked that? Try one of these...

Adding another Consultant to the List
The very true story of the brave boy and his cowardly mother
Other People's Children

Posted in Blog, Define Normal Blogging Challenge | Tagged acute respiratory distress syndrome, ARDS, aspiration, baby, baby underweight, bile bag, family, g-j tube, gastrostomy, jejunostomy, mic-key button, n-g tube, n-j tube, nasogastric tube, ng tube, nissen's funodplication, nj tube, reflux, roux en-y jejunostomy, surgical jejunostomy, tube feeding
When Life is just a Load of Crap...
When it's quiet...
Shutting Down

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25 Responses

  1. DeniseC says:
    24th Mar 2012 at 12:31 am

    Brilliant, touching & heartwarming. Dominic is a superstar (& his eyes will melt a million hearts if they haven’t done so already!) xx

    1. RenataB says:
      2nd Apr 2012 at 1:02 pm

       Thanks Denise. The boy has killer lashes too, lets hope he doesn’t realise their power when he’s older!

  2. Anne Hawkes says:
    24th Mar 2012 at 1:42 pm

    Lovely video.  Tubes are lifesavers, non of us wish them for our children but given the alternative we learn to accept them and as you say they become part of our family life.

    1. RenataB says:
      2nd Apr 2012 at 1:02 pm

       You’re right Anne, it is a case of accepting them. It now takes me by surprise when someone is shocked by one of them. Thanks for commenting x

  3. Karen says:
    24th Mar 2012 at 4:48 pm

    Absolutely fantastic video, Renata! & some totally gorgeous pics too….
    K x

  4. Sally Wilson Allen says:
    24th Mar 2012 at 5:07 pm

    Beautiful. I love your superhero. Thanks for sharing how normal is for you – and pointing out how normal is different for us all.

    1. RenataB says:
      2nd Apr 2012 at 12:59 pm

       Thanks Sally x

  5. Lisa Beaton says:
    24th Mar 2012 at 6:13 pm

    Just watched your little VT with the fantastic photos and captions 🙂 It was almost 2 years ago that our daughter had her NG placed, when I was somewhat naively prepared for a 3 -6 week trial to “boost her up” – ha ha! 9 months later and she had her gastrostomy and fundoplication done. I was horrified when the g-tube was first mentioned, now I thank goodness for it – every day. Your young man is fab, gorgeous eyes….must be tough to refuse him anything!!

  6. Just Bring the Chocolate says:
    24th Mar 2012 at 8:45 pm

    haha, yes he is desperately cute, and funny to boot. I completely agree, I was horrified at the thought of anyone ruining his perfect tummy, but the second he had the g tube I could see his face again, no tubes coming out all the time, no taping- SO much easier!

  7. Hayley says:
    24th Mar 2012 at 9:09 pm

    What a lovely video! Dominic  looks like such an amazing boy!

    1. Renata says:
      24th Mar 2012 at 11:22 pm

      Thanks Hayley, he is. Hopefully he’s get to meet some of the other SWANs soon, including Freddie x

    2. RenataB says:
      2nd Apr 2012 at 12:59 pm

       I know I’m biased, but he is. Cute, brave, funny and gives the best cuddles. Thanks for commenting x

  8. hy says:
    24th Mar 2012 at 9:54 pm

    That’s an incredibly moving video. Thanks for taking the time to put it together, hope Dominic goes from strength to strength!

    1. RenataB says:
      2nd Apr 2012 at 12:56 pm

      Thank you, I really enjoyed doing it actually, it’s lovely to share with the kids as well as they’re always fascinated by baby photos of themselves
       

  9. Kate Thompson says:
    25th Mar 2012 at 10:01 am

    Wonderful – so moving. So glad to have shared your journey and seen Dominic grow and thrive 🙂 Here’s to a LOT more “normal” 🙂

    1. RenataB says:
      2nd Apr 2012 at 12:58 pm

       The difference from the early days when he was a scrawny screamer to the happy little chap now is remarkable. Fingers crossed we’ll look back again in 5 years and be in an even better place.

  10. Pingback: Love All Blogs » the altruistic blogging network and showcasing site that welcomes all bloggers » 02-04-12 Love Health Weekly
  11. RenataB says:
    2nd Apr 2012 at 1:00 pm

     Thanks Karen, kids are an easy subject to photograph, such beautifully expressive faces. Appreciate the lovely comment, thank you x

  12. Aly says:
    4th Apr 2012 at 6:33 am

    Hello, Annie (Mamasaurus) flagged this post on forum and I thought I’d pop by to have a look.What an incredibly beautiful little boy you have, and so resilient.It made me cry, giggle and smile.Thank you for sharing.

    1. RenataB says:
      4th Apr 2012 at 11:08 pm

       Pleasure, thank you, and thanks I guess to Annie!

  13. Lisa | Mama.ie says:
    4th Apr 2012 at 8:41 am

    Thank you for sharing this. Your video moved me to tears. What an amazing little boy.

    1. RenataB says:
      4th Apr 2012 at 11:07 pm

       He is amazing, thanks for taking the time to let me know you agree with me 🙂

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  16. JenLogan says:
    24th Jul 2012 at 12:47 pm

    Once again, beautiful my friend. Dominic’s huge eyes speak volumes… including that impish look that I too, am falling in love with. Why do you not live closer? Stupid ocean…

    Thanks for participating in the T-21 Blog Hop for July, 2012
    http://downwitdat.blogspot.ca/p/t-21-blog-hop.html

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