Comments on: Courage through sharing.

By: Shannon @ Gabi's World

Shannon @ Gabi's World — Mon, 28 Apr 2008 05:52:58 +0000

I hope that now you have a diagnosis that they can treat her properly and prevent some of the pain and heartache! Nice “meeting” you!

By: Ectodermal Dysplasia Society

Ectodermal Dysplasia Society — Sun, 27 Apr 2008 12:01:40 +0000

Hi, I run the Ectodermal Dysplasia Society in the Uk and would be happy to try and help you all we can. Please contact me. Diana

By: Ice Cream

Ice Cream — Fri, 25 Apr 2008 22:11:50 +0000

My head is spinning and my heart hurts just reading this. I wish more doctors would trust the hearts and intuition of mothers. There would be a lot less misdiagnoses going on. I hope you find more answers soon.

By: river

river — Fri, 25 Apr 2008 12:10:45 +0000

Print this post. Make multiple copies. Present one to a lawyer and sue the pants off those doctors. You told them in the beginning that she was like Immy and they refused to admit this. All along they haven’t truly listened to you.
“….don’t be silly, she was prem, you have to expect this…” What BULLSHIT!!!
Noah was born at the same time, going by their statement he should be as sick as Ivy. Many, many babies are born premature and they don’t have these problems. Have the lawyer call on whoever is the head honcho at your hospital and demand answers. Sue the hospital as well. This really sucks.

By: Marylin

Marylin — Thu, 24 Apr 2008 19:47:05 +0000

Oh Tiff, I can’t say anything to make it all better, I really REALLY wish I could.

Lots of love to you and Ivy. xxx

By: Childlife

Childlife — Thu, 24 Apr 2008 19:34:02 +0000

Tiff… I sobbed my way through this. Just SOBBED. Identifying with that longing for there to be a simple explanation, for it to be nothing. Doubting myself. Hating myself for doubting myself. Frustration with trying to get someone, anyone to listen. Resenting that when they finally do listen, it’s like watching Jacques Cousteau encounter a newly discovered species… wishing that they would see the child and not just the disease and potential journal articles. Despair and the near endless sensation that you are chasing your tail, that you’ll never get past that first square.

Thank you for sharing from your heart. I’m saying lots of prayers for you and Ivy right now, that she’s through the worst of this latest rough patch, that there are no more hospitals in you immediate future. Hang in there Tiff. I know it doesn’t feel like it right now, but you HAVE made progress this year - so much! Just keep being tough for that little girl, OK? I know you can do this!

(((Hugs)))

~Michelle and Jacqui

By: Stacey

Stacey — Thu, 24 Apr 2008 17:34:36 +0000

As the mom, you are the best advocate for your child–
I hope that life starts giving back some good things for you and yours!
Courage, Courage! you got it!

By: frogpondsrock

frogpondsrock — Thu, 24 Apr 2008 14:36:37 +0000

Stamp your foot Woman..

Straighten your shoulders..

Take a deep breath..

You are The Mother!!!!!

Listen to your Heart…. and then

Listen to them…… But dont accept what they have to say as fucking gospel..

Battle through.. We are here for you..

WE ARE HERE FOR YOU!!!!

You Fucking Rock!!!!!

We love you Tiff..

And we all want Miss Ivy to be Well…..

XXXXX KIM XXXXX

By: Veronica

Veronica — Thu, 24 Apr 2008 13:19:43 +0000

I have no idea.

Hopefully to a treatment plan that works. To Ivy playing and laughing and NOT having more pain that a 2 year old should.

It is so bloody hard. (((hugs)))