This post..

 This post has been hard for me to make.. I've been trying to make it for a day or so. I told you all last time I would be posting pictures of Gunner's wounds and keeping you updated that way, another way to raise awareness and to share OUR reality. When it comes to looking through the pictures of now what was almost a year ago, it gets to me. His feet just looked so bad. It brings me back to the pain that he was in, hearing that distinct cry that he made in the NICU when we would have to literally peel away his old bandages taking his skin with us. Now, I can tell his "pain cry" between his "cranky cry."

Sharing these photos is a big deal for Cody and I. In the beginning, Cody and I only wanted certain people to be in the "dressing room", and didn't want people to accidentally open up a photo on our computer that had a picture of Gunner's feet or a wound on his body. It is something that was (and still is) so private to us. It is like opening people up into a private part of our lives that we have kept between a chosen amount of people for so long now. But, what has made us decide to share with you all is to raise awareness. To post these nasty wound pictures to show Gunner's reality. Today, Gunner's ankle was really raw, we then easily peeled back the old bandage on it and it took even more with it and his ankle just started bleeding. He is developing anxiety (I believe) with his baths now. He cries when I lay him in the living room floor to start to unwrap his bandages. I do it here because it is where we have the most room, we also do diaper changes here and pop blisters and do maintenance bandages here too. He knows SOMETHING will be done to him that hurts when we lay him down and he automatically starts crying. He cries the minute we walk into the bathroom, before we put him in the water (because the initial dip into the water stings his wounds, which is why we put pool salt in his baths.) He is fine in the water, but he won't lift his leg out of the water anymore because going from in the water to out, the air stings his wounds as well. He also starts crying when he sees me lay out his towel. He knows I'm about to get him out, and as soon as I grab hold of his leg to lift him he is in a full blown cry. It breaks my heart, baths were the ONLY thing that he had peace with. But now, it is just another reason for him to be scared.

I DO want to raise awareness. So this is why I am going to share some pictures. Today I also tried to set up a facebook page for Gunner. I got all the way to adding pictures. I know I didn't HAVE to add wound pictures to that, but wanted to, and I just couldn't bring myself to do it. Maybe I will set up a facebook page for Gunner soon, but I just can't do it now. I AM however, going to set up a paypal account so that I can add the "donate" tab I was talking about to this blog. Also, we are working on a local benefit dinner with our local "Rib Crib" restaurant and will be posting the date very soon. This will raise A LOT of awareness and we are looking forward to it!

                                                               Gunner sitting on daddy's shoulders at the Tulsa State Fair

************** I haven't taken many "new" pictures of Gunner's wounds, and from the ones that I am about to show, his feet look A LOT better from at birth. Remember, this is REALITY of EB. This is what my son has to go through everyday, and has been since day 1. This is why we need awareness and why we need a CURE. No child or adult should EVER have to deal with the constant pain from EB.*****************

The very first time we changed bandages with Gunner at only hours old. His little feet were saw raw from the "trauma" of childbirth. We were using totally different dressings than we do now, and wrapping in a totally different way. We learn something new about EB and his wounds, how to wrap, and to wrap with what every single day. We have come a long way in his wound care since December of 2011, which is why his feet aren't as raw. But then again, when this was happening, we were JUST learning about EB, right along with the doctors and nurses. Literally before we did our first dressing change, our nurses and Cody and I watched a video on youtube of an EB mom showing what supplies to use and how to wrap. Talk about scary, what if you brought your child to doctors who you trust and look to have all the answers to what is wrong with your child, and they didn't know what to do or what to tell you? How would you feel? THAT is why we need to raise AWARENESS!

Now, remember these were back in December of last year. Gunner's feet look so much better compared to this. It is hard to look about yes, but imagine how bad it is to feel this everyday, to see your child in pain because of this, and there is nothing you can do to soothe them or make it better but to just cover it back up with a dressing so that it isn't hitting air anymore.

That is all that I will post for now. But that is what we were dealing with from the get go. I will start taking daily pics of Gunner's wounds and posting some with every post. If I lose some "followers" or readers from my blog because of posting wound pictures, then so be it. But this is what EB is.

On a happier note, Gunner is doing good today. Besides the traumatic dressing change today, he is being his normal self, playing with daddy in the floor.

Thank you all for your constant prayers and thoughts for our family. They are really truly appreciated. To donate to funding for research for EB please go to www.irefuseeb.org.

Love,