Sunday, October 12, 2008

NEHI: A Rare Diagnosis after Misdiagnosis

Below is a link to an article a friend of mine (whose son has the same lung disease as Julia) wrote. It is quite informative.

http://www.articles.complexchild.com/Oct2008/00078.html

Julia's health update


This school year got off to a rocky start as you could read in previous posts. The latest has been ring worms...lovely. We also had some strange blister looking marks on her. I thought they were bug bites even though she has never had anything like them before. After much research on the internet and talk with my school's nurse (doctor's office was closed). We concluded Julia MAY have had chicken pox. Yes she had the vaccine but that is not always 100% effective expecially in children with other issues like Julia. As I said I thought they were bug bites because there were so few of them, but even after staying indoors she had new ones coming up. So we are pretty sure that is what it was.
At Julia's teacher's request we have added a mid-morning snack. She has been doing much better eating every 3 hrs or so. She has breakfast at 7am, then snack at 10am. Lunch is at 12 and after school snack is at 3:30. Dinner is at 6pm and night time snack is at 8:30pm. She is maintaining her weight(even gained a pound), and has grown in height. So that is all good.
We did have to double her glasses strength this year. I am hoping this will not be a yearly occurance. Her sight in her left eye is pretty bad close up. No wonder the poor kid hated reading. Now that we have new glasses she is reading above her grade level rather than below. I did speak with the teacher about how much they read out loud in class. She said Julia doesn't seem to want to read as long as she things she is capable of. Uh lady....it takes a lot of air to read out loud for long periods of time. Once she remembered that she has let up on Julia.
Julia is looking forward to Halloween. She still hasn't made up her mind on her costume. She is either going as Cinderella again or going as a Lion.

Hike for Lung Health 2008


Julia did an amazing job with the help from friends, family, and even people we have never even met. She was able to raise over $2,000. The Children's Interstitial Lung Disease Foundation came in 3rd place with over all funds raised. This is great news.
We are so lucky to have people care about Julia the way they do. God Bless each of you.
Grant Hall from Norman who also has chILD, was able to make it to the Hike here in our hometown. Although we were unable to attend in Chicago, the same spirit was envoked. We want to help find a cause for this disease and a cure. Thank you all for the help!