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 :)

Monday, October 15, 2012

Happy Post!

Good morning! We haven't updated in awhile, but soo much has been going on! Where to begin?!

Brystal got her FIRST Tooth on the 10th! Proud mommy! I couldn't believe it. The only down side to her having a tooth now is the faces she makes. She doesn't like opening her mouth to smile anymore. I think the tooth bothers her because she ALWAYS has her lips in a pouty face. Lol but yesterday she was starting to open her mouth more and smile her beautiful smile. It is a start! Also since she doesn't like having her mouth open I only was able to get one picture of her tooth and she was crying so I am not posting it hahah. I'll post one once she is okay with showing it to me! :)

Second, Brystal is doing so well with her Physical Therapist. We have been seeing her once a week now. She brought over a walker for Brystal and with a little add ons and tweaks it will be perfect for her. Without the stuff on it now she is doing great. We just want to make sure she won't get hurt or anything from it. She pulled herself up on a barbie house last weekend as well! I was so proud of her. Brystal is so determined!!!

This last weekend we went to Tucson for the Tucson Meet Yourself. We had a booth for EB Awareness and we handed out SOOOOO many of the cards! I was so happy to be apart of it. We were there for three days. Brystal was awesome. She was waving at everyone walking by. She was also blowing kisses! We were selling EB bracelets, bags and window stickers! If anyone is interested in buying something let me know! All the money goes to P.U.C.K to find a cure for EB.

One of the best parts of the weekend.. Getting our pictures done! We were contacted a few weeks ago by Sobecki Photography and asked if they could do family pictures for us. We said yes of course and we were able to do it yesterday! We have seen a few of them so far and they look amazing. She made it so fun for the girls. I can't wait to see how the rest came out. Brystal wouldn't do her awesome smile but she was able to get some really cute pictures. If you live in the Tucson or even Phoenix area feel free to contact Shamron Sobecki! She is amazing at what she does!
Here is a little sneak peek!

blowing kisses!

This is her new smile because of her tooth hah <3

Just love Brystals face in this picture! hahah

October 4th I had to take Brystal to see her dermatologist at Phoenix Children's Hospital. Brystal clearly had an infection on her leg but a fever as well, which doesn't ever happen. We were really worried. They took cultures of her leg and since it was so late on Friday they weren't able to send the cultures to the lab till Monday! By Monday Brystal was beyond fussy. Nothing stopped her from crying. I ended up taking her to her pediatrician to see if there was something else wrong. We weren't able to do a urine sample since it required us to use an adhesive ( BIG no no for EB patients.) We couldn't figure out what was going on. We just figured we would wait till the lab results came back and proceed from there. We got the results back that week and found out she has two infections on her leg and one was MRSA.. I was so mad! I couldn't believe it. So now the whole family has to put an antibiotic in their noses three times a week! It took a week to get the results back, but Brystals leg already looked 10x better! It doesn't look infected anymore and it doesn't have any drainage what so ever. Which is a great sign! But her derm wants us to start doing bleach baths again! Hopefully this helps her.

One last thing! A few weeks ago a lady saw Brystals story and was so touched that she started a fundraiser for Brystal! We didn't ask her to do it for us. We didn't have any involvement in it! I am deeply touched that she did this for her. It really meant a lot to us. Feel free to pass on the link or share it with some people. It would really mean a lot to us. Bandages are not cheap.

Thanks so much for reading my blog. Sorry again that I get so behind at times. I will try to update again in a week! Hope everyone had a great weekend and has a great week :)

our booth!

Look who stopped by! Congressman Ron Barber
Him and his wife both took EB bracelts :)

Favorite picture from the booth!

Brayce :)