So I'm working on the new stuff for Haven's site that Blogger is offering. Just to mix it up a bit and give quicker links to find stuff. I've added a navigation bar under her main photo that will allow everyone to quick links of info rather than having to dig through. The main part of the blog will stay the same with constant updates - as the navigation bar may not have many updates because it will be facts and stories.
Also - just so everyone knows - I have moved the "Friends of Haven" section up as I have added updates and new friends to that section. I ask everyone to read about each of these children as they mean so much to us.
I've also received quite a few emails from people since the Mystery Diagnosis show aired.....I am excited to have all these emails and thankful for the uplifting messages. I also want to thank the long lost ROHHAD mom (who didn't even know she had a ROHHAD child until watching it and talking with her doctors). There will be more info on her and her 21 year old daughter. Yes - that's right....18 years of trying to get a diagnosis and now they have one!!!!!
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Hi everyone. It's been a long time since I sat and wrote about our daughter's extremely rare disease diagnosis. Literally 15 years a...
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I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child...
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