A time to write...

I've been very cautious about what I write about Eliza on my blog and on Facebook. I know a lot of you have seen that we've had a lot of doctor's appointments for her. Many of you have stopped me to ask, "What's going on with Eliza?". Thank you for caring! I think it's time that I finally write about her and her journey.

Eliza was born a beautiful, screaming baby. She was perfect in every way. Instant love! The day after we brought her home from the hospital she started to get a red rash all over her body. Her eyes were a little swollen. Her legs were bright red. Hmm... we thought. I called the nurse hotline (it was the weekend) and the nurse suggested we take her to the ER to get looked at. After much deliberation we decided to wait it out and take her in on Monday instead. By Monday it seemed to be better so we decided to just call the doctor and see what she said. She told us that newborns often get a rash and not to worry. As the days went on we noticed that her swollen eyes were more normal and the redness seemed to be disappearing.

As the redness was disappearing it was starting to look like streaks. I, being a normal mom, looked it up online to see if I could figure out what was going on. I need to back up a little though and tell you about me. I was born with a genetic disorder called Incontinentia Pigmenti. It starts off as a rash/legions on the skin and can affect eyes, skin, hair, teeth and cause seizures. Well, I've never had problems with my eyes and never had seizures, but have had effects with all of the others. Fast forward. You know what I'm getting at, huh? Yup, Eliza's rash looked exactly what IP rash looks like. We took her in to the doctor hoping against hope that it was just a newborn rash though we both just knew that wasn't true.

The doctor looked at the rash and said that it definitely wasn't a newborn rash. She didn't know what it was. I then told her my past and she went to get another doctor in their practice who was more experienced. He came in and looked at her skin and said that he'd never seen an IP rash that developed in a baby so young. He thought we definitely needed to go to a geneticist and dermatologist. Both doctor's then went to get their huge medical book and looked up IP. They brought the pic of it in and said that Eliza's rash definitely looked like the picture. Deep breath!

Since that first appointment we've gone to many doctor's to make sure that Eliza is developing "normally". Her eyes have to be checked monthly. She had an EEG to check for seizures (though they don't normally start until 6 months of age). We've gone to a geneticist to get her officially diagnosed. We'll go to a dermatologist for her rash in a couple weeks. And of course the well baby check ups. It's been a lot of appointments and a lot of telling doctor's what IP is and what we need from them. It's pretty rare so most doctor's are interested in learning about it. We're all about educating them too so that hopefully we can help another family in the future. So far she's fine. Just a baby with a rash.

Now, after all of this "official" talk let me just show a little of my emotions. Just a little though ;) This has been hard for me. There I said it! It's hard to see your baby girl looked at differently because she has a rash all over her arms, legs, hands and feet. It's hard to have to explain it over and over so that people aren't afraid to touch her. It's hard to just wait and see what else can be effected. It's SO hard to know that I've given this to her and know that she's going to have to deal with it for the rest of her life. I know that God has a plan in all of this. I know that He's in control. I know that, but my human side says Why did you give this to her? Why couldn't it have just stopped with me? I'm sad for my little girl.

So, as I wrap up this post please know that Eliza is ok. She's not contagious. She's not in pain. She does need your prayers though as she goes through her life's journey. Prayers that her eyes continue to develop normally. Prayers that she will never have to endure a seizure. Prayers that her teeth aren't affected. Prayers that her rashes don't get infected.

And as a final note, please know that you can talk to me about this. I won't start crying all over you :) You can ask questions. I really don't mind a bit. I would love for more people to know about IP.