Rainy Days

Hello again,

    Justin has had some red markings again. I'm not sure what causes them. He's also been quite itchy and more dry then normal.  Oh the things we go thru on a daily basis. :) But for some good news... we are in the process of getting signed up for genetic testing through a research project at Yale University. YAY!!! This is so exciting, we will finally know what type of Ichthyosis Justin may have. I was worried that we would never know due to the cost of genetic testing being so expensive. 

Hello,

   I realized today I haven't written anything in a few days...so here ya go.

It has occurred to me recently that Justin's lil attitude will carry him thru anything. He has the most happy  disposition I've seen in a child. I figure, God gave him what he needed to handle his skin. I wake up everyday, and thank god for Justin (not because of his skin) because he gave me a child that is special in more ways than one. We love you, Justin. :)  

Home

Here is a little bit about our first few weeks at home...

So it's day 4 and we had just been released from Hershey. All these thoughts are racing around in my head. "How do I take care of my baby?" "What is Ichthyosis?" "Is he in pain?" " Is he itchy?" On the way home, I'm just a bundle of nerves...we had no idea this disorder even existed let alone to now have a child with it. We get home an I immediately took all his clothes off and wrapped him in a blanket, just diaper and blanket touching his skin. He was still losing the membrane from birth. He had big chunks of skin on his scalp, fingers, toes, and face. We were told to not peel anything BUT in the bath I would help the skin loosen from his fingers and toes. Oh that reminds me of his first bath...ha ha. We were so awkward with our "firsts" because we had no idea how his skin would react. Justin's first bath was horrible, he cried and cried, and cried until I just got in the tub with him. And that's how Justin took his first few baths, with mommy.

 This experience made me feel like a brand new mom, and in a way I guess I was. 

Tuesday Feb 21st 2012

Good Morning,

   Has anyone ever had the morning where coffee didn't sound appealing?? That's me today and it makes me wonder what today will bring?

In other news, Justin is doing great and Gabe is off to school so today I figured I share some of our past. So here it goes...

Monday Feb 20th 2012

Good morning folks, 

   We tried using Eucerin after bath last night and it dried out quicker plus he was more red. :(  But really that's not that bad. I figure once he's in school we'll have all this straightened out. We are headed to the Prime Outlets in Hagerstown today. It will be my mum, little brother and his youngin, and me, Justin and Gabe. Woo hoo ( i know that was way to many ands but i don't care LOL ) 

Alright well...I'll post more soon. :) 

New things

Recently, I have found a whole new family, at least that what its feels like. I have found wonderful, beautiful, precious people living with Ichthyosis and they have opened my eyes. I feel relieved to know there are more than just Justin with Ichthyosis. I cannot begin to explain how alone I felt in all this.  All I can say is THANK YOU!! I can't wait until I can meet some of these people one day! I have started reading about the EB children and even felt compelled to buy a shirt from the Jackson Charitable Fund.  I had tears in my eyes reading about Jackson. :( I wish I had all the money in the world so I could help all the kiddos suffering from all types of EB, EHK, CIE, X-Linked, Confetti Type-2, and Harlequin Ichthyosis. If I left one out please let me know, I'm still pretty new to this. 




I haven't written in awhile but I'm making a new promise to myself...I promise to try and write at least once a day and post in FB so I can do my part to share ichthyosis with the world. ;) 

Today as a whole

So today was a much better day....work is now working with me (finally). I'm glad to see that some people still care. I don't have much to say tonight other than work is good and they want me to feel secure lol.