1. Clean your glass with Windex first, wipe until dry.
Thursday, December 18, 2008
1. Clean your glass with Windex first, wipe until dry.
Wednesday, December 10, 2008
For Halloween EmmaLee was Princess Belle and Ethan was her Knight. She demanded that we call her Princess EmmaLee Belle for weeks afterward! Oh, and I was a scarecrow.
I absolutely love the wig on her. I was kinda hoping that she would too, since she will never have a full head of hair. I've always been open to the idea that she might want one someday, I thought maybe even as early as 5 or 6 years old. Nope, she did NOT like it, just too itchy.
And... EmmaLee turned 4. She wasn't very happy on her birthday, not even blowing out the candles. But obviously she liked the frosting. There WERE stars around the whole border of the cake, until she ran her fingers through it. I actually sat there and secretly watched her do it, I think every kid is allowed at least that on their birthday! lol! What made her finally smile? ELMO pajamas!!!!
Tuesday, December 9, 2008
And yes, I realize that these still need some journaling or explanation...at the very least, a date.
Thats all for now. Question: Does this post count?? lol!
Tuesday, October 14, 2008
Just a few buttons too.
Tuesday, October 7, 2008
It does prove very therapeutic to write my feelings down, and tell our story. I guess I'm just wondering if anyone is even reading it. I would greatly appreciate some comments with any questions you might have about us. Sure, ask anything... about the disorder, about our family, our life, etc.
Thursday, October 2, 2008
Netherton's is from the Ichthyosis family.
Don't know what ichthyosis is? Go here:
There is a lot of random information on the web about Netherton Syndrome. Here are a few sites that I have found and know to be the most helpful and accurate.
(Foundation for Ichthyosis and Related Skin Types)
EmmaLee was five months old in this picture, but she still looks like a newborn! This is about when we got our final diagnosis. The doctors had been telling us for a few months that it was probably Netherton's Syndrome, but all the research we had done only made us wish harder that it wasn't.
EmmaLee and I flew down to Seattle to the University of Washington - Medical Genetics and Dermatology Department. The Doctor, Virginia Sybert, is said to be the Leading Pediatric Dermatologist in the NATION. We felt like we were going to see royalty or something! She was so nice, and really listened to my concerns and questions. She was able to answer some odd, but valid questions I had that no one else had been able to answer. Such as, will EmmaLee ever be able to scar? Which the answer is No. It was a very validating experience to learn so much about all the things we had been seeing and experiencing while learning how to take care of her. We knew what happens with the disorder from dealing with it every day, but now we knew WHY it was happening.
Short Explanation: EmmaLee is missing her Epidermis (which is the top layer of skin). Your epidermis has many important roles, such as maintaining body temperature, keeping germs and bacteria out of your body, and most importantly holding in your body's moisture. The second underlying problem is that due to a genetic mutation, she also Overproduces skin cells to compensate for shedding them. Combined, these two defects cause her to loose water through her skin, causing her skin to dry very quickly and peel off. Sometimes shedding an entire layer of skin each day. The redness is caused by the lack of the epidermis which also serves as a protective layer for all the many blood vessels that lie so close to the surface. EmmaLee's blood vessels are all but exposed on her face. She scratches and bleeds very easily.
Whew... that didn't really feel like the short answer did it? Well it was. There are so many different complications and effects this has on her body, but that is the basics.
Monday, September 29, 2008
I have adopted the term "disease" to try to signify the severity of it to onlookers and rudely inquisitive people.
Don't get me wrong, I welcome questions and would much rather explain it openly, but I do admit that my blood starts to boil when I hear whispers and comments behind my back as we pass strangers in the aisles of stores, "What's wrong with that baby?", "Oh my gosh! She got burned!","Look at that red baby!", and the most recent "What color are you?".
Once put to paper, so to speak, I guess they don't sound quite as bad as I interpret, but the tone in which they were uttered makes a vast difference.
Most of the time these comments are not made to my face and do not require an answer or explanation, and in previous years I was deeply upset by them and would hurry away trying to put as much distance as possible between us.
Lately I have confronted these ignorant exclamations and tried to explain that it was not caused by trauma, but genetics.
This is my answer:
"She was just born this way.
She has a rare genetic skin disease, and she will have it all her life.
There is no cure, only treatments.
It is not contagious, so you can't 'catch' it.
But she is still such a happy girl!"
Then I kiss her cheek.
And continue to answer their questions,
but now they are phrased delicately with concern and sympathy.
Part Two-The Diagnosis...coming soon.
Wednesday, September 10, 2008
Or this mini kit...
Wednesday, August 27, 2008
This layout was done with a free downloaded kit from the coolest website: shabbyprincess.com. You can get lots of free downloads here: http://www.shabbyprincess.com/downloads.asp
p.s. Photo is of my younger sister and my daughter at the Alaska State Fair in the petting zoo.
Sunday, August 24, 2008
Saturday, August 23, 2008
I made the covers out of that extra lightweight cardboard we have instead of throwing it out. Reduce. Reuse. Recycle. I'm all about it now.