Home


About


William


Ivy and Noah


Pemphigus


Donate Blood


Dear Donor


Reviews by Tiff

Subscribe Follow me on Twitter

watch this space
Archives
Categories

Meeting Jillian Skinner and the amazing evolution of Ivy’s psyche.

A few months ago Ivy, Noah, Maddy and I had the pleasure of meeting our health minister for NSW.

Now, this is in no way a political post

but it was an honour to go

because we were there representing the patient population at the official opening of the paediatric pain service at our hospital.

The first in NSW and Australia.

I was able to talk about the amazing work that had been done to help Ivy overcome her pain and fear associated with trauma

and the extensive therapy, organisation of  Ivy’s medical team and care that has been allowed us, as Ivy’s family.

Jillian is very passionate about everyone having adequate pain relief and has a great understanding of how being in pain can alter the course of recovery.

She believes in the Pain Team, which is very good news for kids like our girl.

I’ve thought about this post for a  long time.

I knew that I could physically show you the difference that this remarkable team has made to Ivy and how far the small girl has come

but I have wavered back and forth on the appropriateness of it.

Sometimes seeing is so much more powerful than reading or even listening.

When we first met the pain doctor we were at a point where Ives would be so distressed and her fight or flight response so acute that she would fight

and beg

and shake

every time a needle came near her.

We worked out and pin pointed the exact moment when everything just became too much for the girl

and then with the help of our awesome play therapist

and the team

we started the long process of  what we came to think of  as “reset”

and slowly, slowly, things began to change for all of us but especially for Ivy.

The first recording that I am putting here is sad and overwhelming for me, as Ivy’s Mum

but it gives you an inkling of what we all had to go through twice a week for subcutaneous immunoglobulin, every second day for gamma needles and every night for growth.

It’s a bit over nine minutes long, which is long, I admit

but what you should know is that this particular infusion day started an hour before I was even able to get the butterfly needle near her

and continued to be just like this for another hour.

Please don’t watch it if you are going to make comments about my being cruel or awful for putting it on the internet.

Please don’t watch it if it is going to trigger phobias about needles or medical treatment in any way.

I’m putting it here so you can see the difference in the next video. If there is any negativity surrounding it, I will take it down.

 

Within the year that we have been working with the Pain Service we have gone from having general anaesthesia for infusion

to  heavy sedation

to  light sedation

and finally to using nothing except some lignocaine (numbing medication)

and Ivy’s own ability to relax herself and let her body do what it has always been capable of doing.

I may be totally biased but this kid of mine – she’s amazing.

Yesterday we did our first subcutaneous immunoglobulin at home in over a year

and it was really really…

good

for all of us

but especially for the girl, who was incredibly proud of herself.

This video goes for seven minutes but it was only seven minutes from the point of needling to the beginning of the infusion,

which consequently only took twenty minutes.

 

We have definitely come a very long way.

Share and Enjoy:
  • Digg
  • del.icio.us
  • Netvouz
  • DZone
  • ThisNext
  • MisterWong
  • Wists

34 Responses to “Meeting Jillian Skinner and the amazing evolution of Ivy’s psyche.”

  • Lisa Fisher (4 comments.):

    So so so pleased to see all of this!!! The reality of pediatric illness, and the evolution of bravery in your little girl, needs to be seen. What remarkable progress…..

  • Vanessa:

    What a very brave girl. An inspiration to us all

  • Fiona:

    Its just amazing how much you have to deal with, how much all of you have to deal with. Its also amazing to see how far Ivy has come. You all do amazing in your role. Big Sisters, and brothers included. You are incredibly special people.

  • Shazziebazzie:

    Wow. Ivy you are the bravest person I have ever seen. I couldn’t watch more than a few seconds of the first video because it made me cry. Tiff you so amazing, well done.

  • Dianne Nunn (56 comments.):

    I couldn’t watch more than a few seconds but I am so grateful that you have shared this. I am sure it will help others understand and support the efforts of the wonderful people who have helped Ivy achieve so much. You are such a good mother.

  • Heidi:

    What a brave little sausage & what a big difference.

  • Kirsty Black:

    Tiff it brings a tear to my eye how far Ivy has come with all of this………….what an amazing little girl & what a great team who have worked with her to get her to this point………huge {{hugs}} to you all xoxo

  • Bradley McCrorey:

    You and Ivy are braver than I – I can’t watch either video. All I can say in my own defense is that the both of you have inspired me to do things I thought I’d never be capable of. Nowhere near as impressive or brave as anything Ivy does in a week – but I’m grateful that I’ve learned so much from her, not the least of which being that I should always be willing to learn from those smaller than I.

  • Glow (53 comments.):

    Wow. Ivy’s transformation is incredible. What great progress x

  • Alison Sorensen:

    Hey Tiff

    You are an amazing lady, I cry when my kids feel a bit off and you stand by and watch your daughter go through this time and again – you amaze be. But simultaneous my heart goes out to you knowing the painyou must feel.

    Ivy is also amazing – you and David must live every day in awe of what she goes thru and yet bounces back – I’m I awe of your daughter.

    Finally, thank goodness for programmes like the pain progrle which has worked with Ivy to overcome her phobias – people and programmes like these should be more wildly praised as they make lives like yours more bearable when in sure you feel like sometimes you are surviving day to day.

    BTW anyone who compares what you go thru is not as bad as them has little perspective on the pain of parenting any child – you are amazing

  • Nadia:

    You are all amazing. <3

  • Anne:

    What a brave young lady you are Ivy. I would not be as brave as you – needles are not my favourite thing either. You rock! My golden retriever Basil sends you lots of tail wags and hugs. When he heard me play video one he came and put his head on the computer, watched you and tried to comfort you the whole time. He wasn’t quite sure what he could do to help but he tried in his own doggy way. Im so pleased they have found a way to help you that works…..much love…. Anne x

  • Jodie:

    Yes Ivy there is so much to be proud of. Well done champ!
    And bless you Tiff for finding a way for her xxx

  • Kathy:

    The first video nearly broke my heart, I have no idea how you all went through that each time. What an improvement in the second video, Ivy you are so so brave.

  • Sue Cooke:

    I think you are all amazingly brave, it really is a family undertaking to get this necessary thing done. It was gut wrenching to watch and bought back some hard memories for me of things I’d had to do with our girl when she was a baby but at least for us it was a short term. A give you all a gold medal with HERO engraved on it – they are awarded to all of you. Thank you for sharing, I think it’s the only way for us to understand. Xx

  • Jan:

    Thank you for sharing this. It gives us all a much better understanding of the procedure. What a joy to see the difference that the combined medical staff have been able to achieve for Ivy. I was able to hold it together until I saw Noah gently stroking Ivy’s arm. You and your family – special people.

  • river (193 comments.):

    I watched the whole thing and cried, it looks so painful, yet Ivy is so brave, it tore my heart to hear her crying “I’m scared”, then the later one where she is calmer even with the pain. Ivy has such lovely long toes….

  • Emma Fahy Davis (5 comments.):

    Wow, that is just mindblowing! While we’re still at the kicking, screaming and fighting stage with needles (or even being examined in general) here, after 12 weeks of intensive therapy at Westmead, at least we’ve managed to get the random, spontaneous melt-downs and anxiety attacks under control. Ivy’s progress gives me so much hope!

  • Carol:

    You are all so incredibly strong and so so brave.

    Amazing.

    And wonderful to see the difference the pain management dept has made. Hope it continues to receive funding so whoever needs this help can get it.

    Much love to the girl and you all for a happy new year xx

  • Dianne (32 comments.):

    I had to turn the sound down but I watched it all. Ivy you are the bravest little girl and seeing Noah stroke your arm brought tears to my eyes. What a wonderful family you have and so glad this pain relief program was funded and helped you. I only wish that I had your courage.

  • Ramona:

    Tiff, I’ve been following you quietly for quite some time and I occasionally pop up, as I am today. I think you’re a wonderful mom. To post this is to show how far Ivy has come, she is so young and is fighting for so much. Please, stay on your path… the strong and courageous path. Even when you get tired, don’t give up. Know that you are being rooted for and hugged from the other side of the globe.

  • MFA Mama (51 comments.):

    Oh Tiff. The second video made me cry, from the tenderness of Noah and Maddy supporting their sister and the bravery every one of you showed. You are, you have, a wonderful family. xo

  • Marylin (26 comments.):

    Oh Tiff, what an amazing job Ivy did! She’s certainly come a long way. Much love to you all. Your family is amazing. Every single one. x

  • Claireyh (13 comments.):

    I have to admit. I cried during both of these clips, but not because of the content, just for the fact that Ivy (and other children) have this as part of their normal routines. I think it is important that the reality of life with illness is shared, especially when done with the consideration that you do Tiff.

    My main hope for Ivy is that the requirement of these needles one day goes away, but until that day, may the pain team get all the funding and back up that they forever need.

  • Elissa:

    YOU ARE ALL (THE WHOLE FAMILY!) AWESOME!!! As a paediatric pain service nurse in Canada, this post makes me so so so happy to see and share. You have obviously all worked really, really, really hard to get here… not easy when Ivy is in and out of the hospital so much. Please tell everyone that someone in Canada is cheering you on!

  • SassyCupcakes:

    Hooray for the pain service. It’s wonderful that Ivy has been able to make so much progress. It must bring relief to your whole family to have life a little less traumatic.

  • kylie herman:

    Its amazing what a great medical team can do. You and Ivy and the rest of the family are doing a great job. It hurts so much to go through that but you know it has to be done for Ivy and she knows it too. Thank you for sharing your story , there are many families experiencing what you do everyday ( not to take away from your awesomeness or Ivy’s), it is great that you are able to show and tell people about your experiences so everyone can learn what it is like to have a chronically ill child and understand the workings and difficulties associated with such. You are very blessed to have a great medical team. Over the course of 13 years with our child I have come across the best and the worst of the medical profession. Stay strong and most of all follow your motherly instincts as in some instances that is the only thing that has kept our son alive. Xxx

  • Chez:

    Yes Tiff you are totally right, that kid of yours is AMAZING. Ivy has definitely come a long way and I love that she is now capable of calming herself. I have watched Ivy grow so much over the past few years and I feel so proud of her. She is a strong brave inspirational young lady xx

  • Wendy S (9 comments.):

    What a brave girl!
    I also cried during both clips, but simply because Ivy (and all the other kids who need these needles) have to go through this :(
    Makes my daughter’s once a fortnight epi pen injection look like a walk in the park.
    Your whole family are amazing.
    I loved your flipagram photo video that followed these videos, some gorgeous photos.

  • mum:

    What a phenomenal difference the absolutely necessary funding for the pain management team has made for Ivy. The relief for all of you. and the return of confidence in the ability to administer to Ivy, must also most assuredly be accountable to Ivy’s courage and strength in overcoming her fears. Such a mammoth task and no mean feat for such a dear little girl who has had to suffer much in her short life.

    I do know though, as does Ivy, that without the love of her caring family and the wisdom & advocacy of her wonderful mum, the task would have been insurmountable and therefore unachievable. You certainly have come a very long way indeed! :-) xoxo

  • Malady:

    That first video is heartbreaking… how you all did that, day in and day out, for so long… you all deserve medals.

    The second one, just, WOW. It is an amazing and it must be a relief to all of you that its so much better now.

    What blew me away was how you do the transfusions and injections as a family – and how everyone was gathered to support each other. That is amazing and wonderous. What a wonderful family you have created Tiff.

  • Lisa:

    Bloody hell, that kid is so brave, I just can’t believe it. I watch adults getting needles and very few of them can cope with it as well as she can. She’s SO brave!

    So are you too though. It’s a special kind of torture being the instrument of a necessary evil on your own kid.

  • Lisa:

    You are amazing, Ivy is amazing, your family is amazing. That’s all :-)

  • alicia (26 comments.):

    Tiff I have read your blogs for years and my heart has ached for you so many times, but today seeing these videos….thank you for sharing them, because while reading about your struggles has effected me always, seeing it…..oh sweet Ivy, I had tears, still have tears pouring down my face. I can barely write this. I can’t imagine how hard this is for you daily to watch your precious little one go through this and honestly how crazy frustrating it would be when you just need to get this medicine in her and how much of a battle it could be and wow just wow. Ivy is INCREDIBLE, no there is no word to describe her. The difference in those videos, the change in her, her strength is palatable and contagious and awe inspiring. Its truly amazing. You let us into a world today, given us a small moment of all you do and go through….Ivy is amazing, but Tiff so are you, I am in awe of your family once again. I so wish we lived closer, I so wish I could hug you and Ivy, maybe one day friend, maybe one day :)

Leave a Reply