Wednesday, 21 September 2011

Tough Little Cookie

Niamh has been in an unwakeable sleep since last week. We did have another scare last night when her breathing became very noisy and fast. We adjusted her position onto her side and she managed to cough and sort herself out.

Niamh seems to be holding on to life with the same resilience and strength she has shown all through her treatment.

She's now on day 7 without any food or water (after her stomach stopped absorbing). She has continued with the same medication through the syringe driver and doesn't seem to be in any pain or distress.

The areas of skin where her shunts protrude from her head have become sore and we have had to put duoderm over them to help protect them. She's also sleeping on a special mattress (ROHO) which really helps.

We try to keep up with doing things with her, though not very much any more. Just walks in the garden, different rooms in the hospice and the occasional warm shower using a special shower bed. Eye care and mouth care. Lots of cuddles, of course.

Everyone at Acorns is taking great care of us and making these last days with Niamh as special as they can be.
Posted by Helene Brennan at 20:14

37 comments:

  1. Anonymous21 September 2011 at 21:06

    Thank you for updating the blog - we have all been so worried. A big kiss for Niamh and our love to you all. Matt, Katy & the boys.

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  2. Anonymous21 September 2011 at 21:10

    Dear Helene, Alex and all,
    Thinking of ye. What a little fighter ye have there! I'm sure ye must be so exhausted. Isn't it fantastic that Niamh is comfortable and not in pain. Look after yourselves.
    Love, Anne-Marie in Tuam.x

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  3. Adrian21 September 2011 at 21:13

    We're always thinking of you all. Never feel alone. Hugs and kisses to all. Adrian, Vic, George and Henry

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  4. Anonymous21 September 2011 at 21:20

    Bonsoir
    Merci de partager ces nouvelles! Votre petite fille est vraiment admirable, comme vous d'ailleurs. Profitez bien de ces moments ensemble. Nous pensons tous beaucoup a vous. Nathalie de Belfast

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  5. paultomlins21 September 2011 at 21:23

    We are so glad that she is so comfortable and that you are able to take such amazing care of her.

    Thank you for the update. Our thoughts are and will be with you.

    Paul and Abigail

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  6. Anonymous21 September 2011 at 21:27

    Dear Helene, Alex & Girls,
    I have been thinking of you all and have missed my little friend, Emilie, a lot! I am hoping to be be able to pop in by Friday but meanwhile, big hugs to you all.
    Julie xxx

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  7. Anonymous21 September 2011 at 22:08

    Please give Niamh a kiss and cuddle from all of us, our thoughts continue to be with you all. Gary, Emily, Benjamin and Isla xxx

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  8. Anonymous21 September 2011 at 22:21

    Quelle petite fille courageuse... Et quels parents admirables. On sent tant d'amour autour de vous... Vous êtes dans nos pensées tous les jours et j'espère que nous arrivons à vous apporter un peu de soutien. Vous n'êtes pas seuls même si nous nous sentons tous bien impuissants devant un tel drame. Bon courage. Christine

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  9. Jane Hunt21 September 2011 at 22:25

    May you draw some comfort in time from the fact that she is not suffering and from the depth of love and care you have all given unstintingly to Niamh throughout this ordeal. Candle lit and thoughts and admiration to Emilie, Helene, Alex, the wider family and little Niamh - the so much loved figher. With the deepest regard, Jane

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  10. Claire Sower21 September 2011 at 23:09

    Thinking of you and sending hugs to you all. Claire and family xxx

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  11. Anonymous21 September 2011 at 23:16

    Thanks for the update, I keep watching and praying xxx

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  12. Anonymous21 September 2011 at 23:22

    She certainly is a tough little cookie. I am sure you are making the most of all the cuddles. We are all thinking of you at this desperately hard time and send our love and hugs. You are amazing. Lots of love Jo, Aaron, Jake & Charlotte xx

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  13. Anonymous22 September 2011 at 00:09

    Thank you very much for writing. - Niamh surely loves you just as much as you love her and enjoys you being around her. - How comforting to know that she does not seem to be in pain or distress; and that there are still so many things you can do for her.

    Lots of love to all of you.
    Astrid

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  14. Anonymous22 September 2011 at 07:37

    Yes thanks for the update. We are thinking of you guys all the time.
    Lots and lots of love,

    Chantal and Adam xxxxx

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  15. Anonymous22 September 2011 at 09:01

    Thanks so much for your update, your tough little cookie certainly is a fighter. We're constantly thinking of you all at this most terrible of times.

    All our love to all of you.
    Scotty, Julie, Steavie & Kristie
    xxx

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  16. Hayley22 September 2011 at 11:33

    Sending beautiful Niamh & you all lots of love and support. As always you are in my thoughts and prayers.xxxxx

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  17. Anonymous22 September 2011 at 11:37

    Thank you for updating the site, I have been scared to look. A product called Mepilex border might also help protect her head, it's a foam dressing. You are doing so amazingly well at this most awful time. Give her hugs from us too.
    Lucy, James & Daisy xxx

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  18. Anonymous22 September 2011 at 12:05

    Hello guys,
    Still thinking of you all loads. Niamh is very much a tough cookie. She has shown such strength and bravery throughtout. I think you have all, Helene, Alex and Emilie shown great courage and you are an inspiration to us all.
    Sending you all lots of love
    Kate, Cody, Scott and Euan xxxxxxxxx

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  19. Claudie22 September 2011 at 14:48

    Je pense très fort à vous,Niamh doit ressentir tout cet amour que vous lui témoignez par votre présence et vos caresses.Avec toute mon affection. Claudie.

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  20. Anonymous22 September 2011 at 16:34

    Thinking of you all & your amazingly resiliant & precious little Niamh. You are always in our thoughts & we continue to be inspired by you all. All our love Mel, Michael, Imogen & Zara xxxxxxx

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  21. Anonymous22 September 2011 at 18:59

    Thinking of you . My thoughts and prayers for all of you. Thanks for writing and keep us informed. Also you are so brave Helene!

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  22. Anonymous22 September 2011 at 19:08

    All our thoughts, love and wishes for whatever might ease all your pain at this difficult time. We are thinking of you each evening and are constantly amazed and inspired by your strength. All our love, ian anouska lola and india xxxx

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  23. Anonymous22 September 2011 at 19:52

    I don't know you very well personally, having just attended your evening classes in happier times Helene, but your blog radiates strength, grace, intelligence and love for your family. Such a sad, sad time but you are an inspiration, as so many have said. My thoughts are with you. Catherine

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  24. Anonymous22 September 2011 at 19:56

    Tonight we lit a candle and said a prayer for you. May God bless you all at this very difficult time
    xx

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  25. Anonymous22 September 2011 at 21:16

    Darling Helene, thank you for updating the blog and we are thinking of and praying for you, Alex, Emilie and brave Niamh. Niamh will always know and feel how much you love her. You are so courageous and inspirational that its humbling. All our love and sending you a big hug, Pia, Simon and Sofia xxx

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  26. Anonymous22 September 2011 at 22:14

    Thank you for your update! I am so glad to hear Niamh is comfortable. My thoughts and prayers are with you all. Many people who have worked with Niamh are asking about her and send their love too!
    With very best wishes (and big cuddles for the girls)
    Jo x

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  27. Anonymous22 September 2011 at 22:21

    Sleep peacefully little ones. Much love being sent your way.
    'Tricia, Albert and Leah X

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  28. Anonymous23 September 2011 at 00:13

    Can't get Niamh out of my thoughts. She remains an inspiration to us all. For someone so small she has more courage, strength and determination than anyone that I have ever known. My love is with you all always. I'm sending kisses for the girls and big hugs for you and Alex. Always in my prayers.
    Janet xxx
    Kisses for the girls and

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  29. Anonymous23 September 2011 at 14:09

    I've been checking back daily; thank you for updating us.
    You must be a blessed family to have warm, supportive people around you at this difficult time. x
    Lorna

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  30. Anonymous23 September 2011 at 16:26

    Dans ce monde tourmenté vous nous donnez une leçon de courage et d'amour.
    Nos pensées affectueuses vous accompagnent dans ces moments difficiles.
    Niamh , quoiqu'il arrive, est dans nos coeurs.
    Marie-Bernadette et Christian (France)

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  31. Anonymous23 September 2011 at 18:42

    I'm thinking of you all everyday and your all in my prayers. Give Niamh a big kiss from Demi and I and tell her Demi will never forget her and her beautiful little smile. God bless you all and try to stay as atrong as you can during this difficult time.
    Love
    Anne-Marie & Demi
    xxxxxxxxxxxxxxx

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  32. Anonymous23 September 2011 at 19:54

    Niamh really is a true fighter. It must be heartbreaking for you to see her like this but I hope that you can take some comfort from the fact that she is peaceful and relaxed and that you are being looked after so well at Acorns. You are constantly in our thoughts and we send you all our love. Kate, Jon and Florence x

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  33. Noel Brennan23 September 2011 at 22:13

    Helene and Alex, it is unusual for us to be waiting, watching and hoping with you from a distance. But, like family, friends and the many other interested observers, we wish you well at this very difficult, tiring, but especially sad time. We share your love: if only we could share your pain.
    This brief message of support comes with much love from Noel and Mary. X
    PS We have heard about, and are impressed, with the wonderful support you receive at Acorns.

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  34. Anonymous24 September 2011 at 10:58

    Thinking of you all with love in my heart x x x x

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  35. Anonymous25 September 2011 at 13:29

    I took the boys to church this morning so that the church and we could say a special prayer to Niamh and to all of your family and to all who are obviously so touched by Niamh and her battle. We are thinking of you all constantly and sending you buckets of love. Katy, Matt, Oliver and Alec xxx

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  36. michelle bishop27 September 2011 at 10:40

    Thinking of you all! Everyone from ward 10 send lots of love! Xxx

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  37. Anonymous27 September 2011 at 13:05

    Thinking of you all over there, full of admiration...

    Andrew and all at LSF (Montpellier)

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