Hailey's Story

Day to Day

Extreme Makeover: Home Edition Featuring Eosinophilic Kids set to air this Sunday December 2nd
The title says it all - please watch!!

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Posted by Hailey's Mom at
11/28/2007 4:35 PM | View Comments (0) | Add Comment | Trackbacks (0)
Again, I am behind, although there's not much news
Hailey is doing better off of all five foods although it's a diet that is really hard for us to stick to as parents, we're getting used to it and better every day. It's expensive though, I won't lie. Everything we buy has to be organic, the only kind of soda she can drink is $1 a can, for example. Her meat and cheese all has to be organic or close to anyway. Her bread all has to be made at home. I have found her cereal bars, but 6 cereal bars for just about $6 . . . it's not fun.

We also found out quite on accident the answer to the question about cold foods and beverages. The conclusion we came to with her doctors was that she could have thick milkshakes and ice cream, etc., as long as it's consumed slowly. Well . . . we order her a creamslush from sonic, they gave her a regular slush (like a slurpee) she sucked it down and collapsed on the kitchen floor - benadryl took care of it, but now we know.

That's about it - she's had some RAD/asthma issues, but otherwise has been doing well the last few months! We go back to the doctor tomorrow!

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Posted by Hailey's Mom at
11/28/2007 4:28 PM | View Comments (0) | Add Comment | Trackbacks (0)
I am so behind on this . . . .
Hailey lost three more foods due to patch testing; so, she is now off of wheat, potatoes, soy, corn & rice . . . . big losses in her dietary world.

Then I finished the CURED video;

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Posted by Hailey's Mom at
8/22/2007 10:49 PM | View Comments (0) | Add Comment | Trackbacks (0)
EGID will be on Extreme Makeover : Home Edition!!!
am sooooo excited about this - CURED and APFED need exposure of this kind! I'm not sure when it will air - but the actual home makeover is being done next week! You can follow the progress and read a short story about the family and all FOUR of their children that have a . . . .
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Posted by Hailey's Mom at
7/14/2007 8:18 AM | View Comments (0) | Add Comment | Trackbacks (0)
Thank God for Neoprene!!
So, Hailey's grandmother bought her this nice little neoprene wetsuit - and it worked. Summer fun events will at least add a sense of normalcy to her life - at some point someone will ask her why she has a different swimsuit than everyone else, but at least she can participate!
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Posted by Hailey's Mom at
5/22/2007 12:28 PM | View Comments (0) | Add Comment | Trackbacks (0)
Lots of news - RAD Episodes - Cold Urticaria Outbreaks - Gluten-Free, Potato-Free, maybe more
So, it has been way too long, which means this entry will be way too long, but so it goes. In the next several weeks I will be “re-doing” the website to update it with the many things that we have found out, figured out and changed, but here are some of the bigger stories of the last several months.
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Posted by Hailey's Mom at
2/20/2007 1:43 PM | View Comments (0) | Add Comment | Trackbacks (0)
Results and lots of crazy news . . .
I apologize for the delay in this, but to put it in the Reader's Digest version, the last few weeks have been crazy. . . . .
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Posted by Hailey's Mom at
9/21/2006 4:06 PM | View Comments (0) | Add Comment | Trackbacks (0)
Hailey was so brave . . .
Her scopes have been done the pH probe is in place!!! Hailey was incredibly brave and strong. She drank that phospha soda better than most adults, even though she really didn't want to. She held the gas mask while the anesthesiologist administered her "silly sleep" drugs. She was amazing. They called yesterday and moved it from 8:30 to 10:30, ...........
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Posted by Hailey's Mom at
9/1/2006 2:13 PM | View Comments (0) | Add Comment | Trackbacks (0)
Churg-Strauss Syndrome on Mystery Diagnosis on Discovery Health Channel & the Misdiagnosis of Eosinophilic Disorders
There was an episode of Mystery Diagnosis on Discovery Health Channel yesterday (the name of the episode was "puff of smoke" the website says it will air again in September), that talked about Churg-Strauss Syndrome .... They, whoever "they" may be, believe eosinophilic disorders are much more common than they are diagnosed, but they can disguise themselves as many different things . . .
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Posted by Hailey's Mom at
8/28/2006 9:07 AM | View Comments (0) | Add Comment | Trackbacks (0)
Biopsies & pH Probe Rescheduled for 9/1 - Don't hold your breath
Hailey's biopsies and pH probe have been rescheduled for the morning of 9/1. I say don't hold your breath because she still is sick. She is done wheezing (which she was doing on Saturday morning) and she seems to be done with the barky cough, but all four times she has had pneumonia, it hasn't been obvious. She managed to stay off the orapred, we did give her a couple doses of QVar (her inhaled steroid), but at least we stayed off the systemic steroids. If her nose is still stuffed up and she's still coughing I just don't know if the anesthesiologist is going to want to deal with it. He is a pediatric "high-risk" anesthesiologist, but still. Between the cold urticaria and the RAD, nonetheless her highly allergic system that could react to the anesthesia and nobody would be surprised, I don't think they want her having problems breathing on top of it. The last time she went under she avoided being intabated, but who knows if we would have the same luck this time. We will still get results on 9/13, with an appointment then to see the allergist at NJ on 9/14.

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Posted by Hailey's Mom at
8/28/2006 8:50 AM | View Comments (0) | Add Comment | Trackbacks (0)