Comments on: Discussing Health Professionals Withholding Info Critical to Premie Babies at the Readers’ Cafe

By: Glenda

Glenda — Thu, 21 Feb 2008 03:21:54 +0000

Thanks Chris, well put.

By: Chris Darling

Chris Darling — Thu, 21 Feb 2008 03:15:57 +0000

I’ll just say (my posts could use editing ha)
I really appreciate those that take the time to hear the message that services exist and one has to fight for them , we could all say it should be this way or that but when it comes down to it, we consumers are often left to educate the providers to note the awkwardness
of withholding “promise” and mandated rights
for services that if we persist maybe soon it will be commonsense to do the right thing and have early care do thorough and effective education of parents of special needs kids,,,

until that time the consumers need to inform each other where the health care industry has failed.

lastly do not give up.

By: Lori-ann

Lori-ann — Thu, 21 Feb 2008 03:07:49 +0000

Good night, Glenda. Thanks for hosting a great topic.

By: Glenda

Glenda — Thu, 21 Feb 2008 03:02:17 +0000

I just found this story http://abcnews.go.com/Health/story?id=4311223 – more proof that “you just never know a child’s potential” and may make all the struggle worthwhile.

Thank you, Chris, for sharing your story. And Darrell, Lori-ann, Anna and Karen for joining us.

By: Darrell

Darrell — Thu, 21 Feb 2008 03:01:04 +0000

Chris it has been great to talk with you, hugs to Kiki

By: Lori-ann

Lori-ann — Thu, 21 Feb 2008 02:56:40 +0000

Chris, Kiki is adorable and looks like she is doing really well! Congratulations!

By: Glenda

Glenda — Thu, 21 Feb 2008 02:53:09 +0000

Thank you so much, Chrs. This has been good to hear the current issues parents are facing. Do you have any last words or thoughts you would like to add? Btw, Kiki is adorable!

By: Chris Darling

Chris Darling — Thu, 21 Feb 2008 02:47:23 +0000

Thank you Glenda for being an inspiration and including me in your Reader’s Cafe.
(Please forgive all my typos!)

Chris Darling
Portland, Maine

By: Chris Darling

Chris Darling — Thu, 21 Feb 2008 02:43:42 +0000

Well in answer to that last question Kiki is fine, she has some ambulatory issues but often walks independently , her vision is good her mind is sharp as a tack and she is 68 pounds and close to four feet tall.

She is the most empathic little being and so incredibly well behaved that the teachers and aids are amazed. we are too.
Here is a clip of her today
http://www.vimeo.com/711782

she asks about her brother & says she misses him will wonders ever cease, she say she wants to be a doctor.

Thanks everyone for your comments and stay in touch

Chris

By: Chris Darling

Chris Darling — Thu, 21 Feb 2008 02:36:11 +0000

Well for one if services are federally mandated then anyone related to the health and welfare of a special needs child need to pass that information to the parents/ foster parents/ caregivers etc
THAT SHOULD BE MANDATED THAT that information is noted and the hospitalor care facility have the parents etc a form to sign and notarize that they have indeed, been duly notified that the services exist and that the child in question is scheduled to be slated to receive those said services , there will always be a compliance issue, but where there is need there will be more good done to connect Special needs kids with appropriate services.