Knowing she is involved in this bring tears to my eyes. We did the story to help spread awareness, not only for a cure but to let people know that it is out there. We don't want other families to go through what we went through when Brystal was born. And I know other families have suffered far worse then we have. I don't want any mom to feel alone ever again!
So again THANK YOU to everyone who has wrote about Brystal. retweeted stories, shared on FB or talked about Brystal to someone you may know. This not only helps Brystal but all the other EB sufferes. All of the EB community thanks you. The power of the world wide web :)
A little update on little miss! She is trying so hard to crawl! We want to skip the crawling stage to save her knees, feet and hands and just go straight to walking, but she wants to crawl! I couldn't be more proud. Just seeing her push up on her knees and hands! She is pushing herself backwards! SOOOOO close! She makes me the happiest mom!
She isn't crying during bandage changes at the moment! She is getting to be so good. She is having problems with us picking her up right now. Her sides heal and blister, heal and blister. On going processes. I hate having her torso wrapped all the time since it is so hot here. But it looks like it could come to that soon. I am getting to the point where I am about to cry when I have to pick her up. She is such a trooper. Just seeing her smile at me after makes my heart melt. Grabbing her out of the tub is a mission lately. I am so worried I will make it worse.
Her acid reflux is acting up again. She freaks out any time we have to lay her down to do anythin. Changing her diapers is becoming a task. We are calling her dr again on Monday to call in a new prescription. I hope it helps again. She wasn't needing it for awhile. She was doing great without it. The annoyance of EB -_-
Brystals sleeping is getting so much better! We upped her doxepin to 3.5ml and she is doing great with it. When she wakes up in the morning she just lays in bed talking to herself. Definitely one of the best things to hear first thing in the morning! "mamamama! daaaa-DA!" I just love her voice.
We are having a hard time with her ear right now. Idk if she has something internally going on or if she got a blister on it and its just bothering her. She has rubbed it raw. The picture I am posting isn't the nicest ones but just know that it looks worse then it really is. She doesn't cry or anything when she is rubbing it. We drove in the car for 10-15 mins and when I got her out she had blood all over her hand, face, kneck, ear and outfit. Didn't cry once while in the car. I am pretty sure that I freak out more then she does lol. I don't do blood AT ALL lol
Brystal is sitting on the floor trying to crawl just talking away! Very VERY happy baby! I couldn't have asked for a better baby. She is a very special gift I will cherish for the rest of my life. Knowing we have such an amazing group of family and friends to support us makes us one happy family! Thank you to everyone once again. And know that I do read every comment and I sincerly appreciate everything all of you do :)
Her little ear :(
:) Bandage time!
This is her better leg. This is the worst is has looked in a long time.
This is her bad leg and it looks SO good right now!
Holding her bottle! She holds it all the time now!
I hope every one is having a great weekend. Will update soon!