Thursday, October 18, 2012

thank YOU!

Brystal now has an EB Facebook Page! Look up 'Once Upon A Butterfly - Baby Brystal Murray's EB Story' !! I didn't set it up, someone helped us with it. We are so grateful for all the help!!!

Brystal had her physical therapy today and Brystal is amazing with her. Well today was just not her day! She cried for the first 10 minutes. Wouldn't calm down. She would just look at Brystal and she would cry. I feel so bad for her when she gets into these moods. I wish I could read her mind! I talked to her physical therapist and waited for her to calm down. Once she did she was completely fine :) She does so good with Brystal. I just love how well she is doing. It amazes me. When Brystal was born we thought that she was going to be behind for ever. That she wouldn't be able to crawl and she is doing 100x better then any of us predicted! I am so proud of her. She knows what she wants and right now it is walking! She is so focused on it. She is standing up every day now. It is crazy how she picked up on it so quick! I know she is 11 months and standing up but to EB parents this is a huge milestone. The best part is that she doesn't seem to be blistering from the weight on her feet. She seems to only be getting blisters on her poor little hands and fingers. They are blood blisters too. Which she freaks out when I have to pop them!

It is crazy to think that before I had Brystal I could NOT stand the sight of blood. It would make me so sick. When Sophie was 8 months and became very ill, I almost passed out from watching them take her blood. Now with Brystal, it doesn't even faze me. It is amazing. Other people see Brystal's leg and freak out and to me it is normal to have a bloody bath/ bandage. It is normal to have blood on my shirt afterwords. It is just crazy to think how your mind over comes things! I dropped out of MA classes because I found out we had to give each other shots and learn to draw blood on each other and now I don't even flinch at the sight of her open leg.

Brystal has definitely changed my view on things in life. Just today Brendan and I were talking about how this past year has been so hectic and how much different our lives would have been without EB. I wouldn't have become a stay at home mom. I wouldn't have over come my fear of blood. We wouldn't have gotten to know so many WONDERFUL people in the EB community. Just so many things! I am a serious believer in how every thing happens for a reason. I believe that every thing you do and all the bad days you endure all happen for something amazing. Brystal has changed everything for me. I appreciate the small things so much more now. I never realized how I took so many things for granted. I couldn't imagine a life without EB. I know you probably think that I am crazy, but EB isn't Brystal. Brystal has taught all of us so much in less then a year. She is an amazing baby. I wish I had the strength she has, she wakes up every day smiling. She is in more pain then anyone I know and she smiles through it.

Enough of the sappy stuff! It is too late for this haha. I really started this post to say THANK YOU to everyone that shared and donated the indiegogo fundraiser. Today alone you guys have helped us raise more then half of our goal! I am blown away by every ones generosity! It is great to see so many wonderful comments on the page as well! I am really touched by everyone single one of you. Knowing that there are really amazing people out there. So THANK YOU once again! This really means a lot to us :) I about died when I saw the fundraiser blow up today! You guys are amazing in every way! Even the ones who couldn't make a donations thank you for spreading the link and getting the word out. And to everyone that hasn't seen it yet here is the link:

I better go to bed! We have a very busy day of relaxing tomorrow since it is just myself and Brystal tomorrow! :) If you ever have any questions about Brystal or any questions for myself please feel free to facebook message us on Brystals page. Myself and Brendan personally run the page and would be more then excited to respond to each and every single one of you. I have been getting a lot of questions about when Brystal was first born so please don't hesitate to ask :)

Thank you for reading my blog!!!! :D

One of my favs from the photo shoot :)

Happy Baby!!

2nd Time Standing on her own <3

Mad at me for not giving her any more snacks lol

So I got carried away looking at pictures of Brystal as a little baby so I had to post a few of them! I definitely miss these days even though we bandage changes took almost 2 hours!

She was only 4 days in this picture! The first picture I got of her without an IV in her head! One of my all time favorite picture of her!! <3

This is what we would do every day! It took us almost 2 hours!

Her fourth Coyotes game :) Spoiled? She was only 3 months lol

  Hope you enjoyed the pictures! Good night!!
Brayce :)


  1. Hi. Came across your story through another EB baby (Easton). Just wanted to let you know that you have an adorable little girl and the strength you (and other EB parents) have TRULY AMAZES me! That pic up above of her "mad" face cracks me up, btw. I do have one question, if you don't mind me you know what type of EB she has?

  2. Yes. She has Recessive Dystrophic EB. We aren't sure how severe hers is just yet, but she does have the scarring, missing finger nails and toe nails as well as deformed/thickening of the finger nails.

  3. Continued hope and prayers for your family and especially your little girl!