[SuzBerg]

I thought it would be great if we could start a thread that would list websites for information and support that might be helpful for our kids different diagnosis, needs, etc.

So please post what websites you have gone to that have been helpful for you in learning more about your kids medical condition or have helped you in any way. THANKS - Suz

[athikers]

lylac sent me over to parent 2 parent when I got Teeter... it has many different forums for many different special needs. It has been very helpful to me, especially when educating myself about Teeter's conditions.

[SuzBerg]

Since this is my level of expertise and we have a couple people with "heart-kids" on the board. I'll list my favorites:

Welcome to Little Hearts - Parental and child support groups, health resources, family networking, information and hope for families affected by congenital heart defects CHD such as Ebstein's Anomoly, Pulmonary Stenosis, Total Anomalous Pulmonary Ven
Congenital Heart Information Network
American Heart Association
It's My Heart (Online Community) - Home
PediHeart Website
www.kidswithheat.org

[SuzBerg]

Thanks for your post ath - I'll have to check that one out .

Here are a couple of more helpful websites I've found on this journey:

CaringBridge. Free Websites That Support And Connect Loved Ones During Critical Illness. (allows parents to set-up a website they can update with photos, a journal, etc during a childs hospitalization, illness, etc.)

CarePages - Support and community for everyone coping with illness (same as caringbridge)

Home (Ronald McDonald House offers housing for families during their child's hospitlization or treatment)

Make-A-Wish Foundation : National Home Page (the Make-A-Wish Foundation® gives hope, strength and joy to children with life-threatening medical conditions)

[specialk4b]

We looked at some of these sites:

Wide Smiles: The Cleft Lip, Cleft Palate and Craniofacial Deformities Resources
Cleft Palate Foundation
Cleft Lip and Palate – Children's Healthcare of Atlanta

Also Love Without Boundaries has a really cool CD called the Manual of Special Needs that gives a background on lots of different needs.

[devildogwife]

I think you got most of mine covered Suz, which were very helpful btw when we first learned of Cam's diagnosis.

I have one that is specific to Nebraska

http://www.midwestheartconnection.com/

[devildogwife]

Another good one: Baby Hearts Press

Our children's hospital carried her book and it really explained HLHS well, after I was finally ready to learn about it.