Brystal's 1st Birthday!

I am so sorry this is so late! We just have been soo busy and caught up in everything! We had a great Thanksgiving! If you don't follow Brystal's facebook page you have no idea what I mean by busy! Lol Well we have been going through a lot these last few weeks. Brystal turned one (yay!), Thanksgiving, broken washer, Insurance problems again, Social Security thinks we make too much (only Brendan working), and Brystals health. It has been pretty stressful and hectic here. There have been a few good things going on though :) Brystal is ALMOST walking. She is super close. Her pt thinks she will be walking soon! So keep your fingers crossed. We are in the process of getting her off the bottle! Not my favorite thing about turning one but we will do it! Let me tell you about Brystal's birthday!

Brystal was sooo good. She had a blast. As did I!! All of our close family and friends were there! I wanted to say Thank You to my bestest friend. You know who you are ;) She is definitely my rock and surprised me by comig to her party. She started her new job and didn't think she would be able to show up! Anyways! Brystal got a ton of giraffes for her birthday lol. I'll Have to take a picture of all her giraffes and what not. She is too funny. And she got a lot of toys and CLOTHES! Yay! She was in such a great mood! I was beyond thrilled with how well she was. She didn't have the greatest nap but she did awesome. She even ate her birthday cake! She demolished it! Omg I have a million pictures of her eating her cake. It was the cutest thing. Of course we went with a butterfly and faire theme. It was so perfect. I doubt Brystal noticed it lol. But everyone else did so ya ha.

Okay so I wanted to post more about her birthday but I feel like there are a lot more things going on at the moment that I can't "remember" all the details. Brystal is very fussy and cranky. She has 5 teeth (3molars) coming all at once. She was constipated for a week, but now has diarrhea. She had OT today and we tried out two differet cups for her use. She isn't a fan of either. One of them cut her lip so I doubt I'll be able to get her to drink out of it and the other one doesn't have a valve to adjust her drinking intake and it really worries me. I don't want her to choke on it. She also has a swallow study next week as well as a PT apt and another OT apt. She is going to be one busy girl. It is a good thing I got all my Christmas shopping done and out of the way :)

We are having a lot of trouble with getting Brystal supplies. We just don't have the money to pay for them since Brendan is the only one working and we don't qualify for SSI till January. It is so stressful. We have been calling supply companies to see if they take our insurance but NONE of them take both our insurances, and the ones that take her secondary which is Medicade won't just run it because it is a secondary and NO ONE does that. It is so crazy and beyond stressful. I just don't know what to do at this point. We are waiting for a call back from her nurse this afternoon. I spoke with one supply company she told me it was $35 a day for one of the supplies we are using on Brystal. And we are responsible for paying 20%. She told me our cost would be around $500 a month! We can't afford half that! It is crazy. I hope we find a company soon.

Last weekend there was a walk in Sahuarita, AZ and they raised money for the dance studio and a few families brought toys for the girls for Christmas. A few even brought some clothes. It was so nice of them! We are in works to do a walk just for Brystal. I am hoping we can do it in March or maybe even April before the weather gets too warm. I will keep everyone updated on that though!

I am hoping that I can update better now. I know I probably say this a lot but I am going to try hard. I feel like a lot is going on and I get lost in it all. The girls ad I are doing projects all week until Christmas. We are starting our own traditions this year and I couldn't more excited. I hope that everyone had a fantastic Thanksgiving and that they continue to have a great time the rest of this year :)

Birthday Outfit <3

Present time. She wouldn't put down her giraffe.

Passed playing after everyone left her bday party :)

kisses!

cake?

Birthday card from her Derm team <3

Great Grandma!

Helping me wrap Christmas presents for sissy's.

Helping me bake cookies for Thanksgiving.

Birthday Present from a family friend arrived in the mail!

Sisters at the park!

Lol LOVE this picture. She looked at me with this smirk after trying for 10 mins to get a picture of her lol

Random snow pile at the park. The girls were beyond excited lol

Dinner!

Swinging with sissy's at the park!

Two of her teeth. Bad picture but only one I could get lol

<3

Happy Birthday Brendan!

Happy Birthday to Brystals daddy! I should probably be asleep, but my mind is racing tonight. I feel like it has been too long since I have posted so I thought that I would post an update while I have all these built up emotions! I need to vent!

If you follow us on Brystal's facebook page you know how crappy her last few weeks have been. It is so hard for me to watch her go through all this pain. I am so emotionally drained lately. I think I do a pretty darn good job at holding back my emotions to everyone and putting up a poker face. I don't know. Just tonight after our bandage change a lot has been on my mind. Also, a family member is at the hospital getting ready to bring a baby boy into this world and it is a bitter sweet moment for myself. Brystal will be one on Saturday ( yay!) and I am sitting her remembering every second of the day I went into labor and every feeling I felt when she was born.

When you find out you are pregnant it is supposed to be the BEST thing ever. And it was with Brystal. We were going to have the perfect everything. We had everything setup and ready for her to arrive. And when that moment came, nothing and I mean nothing went the way we planned. The first thing they said when she was born wasn't anything you would EVER expect to hear... "What's wrong with her leg? Do you see that?" As a mom I didn't even know what to think. I just remember looking at Brendan like uh? What? Is this real? I remember asking him "what's wrong?!" Then they handed me her and I fell in love and thought "OMG she has hair!!!" We didn't think she would have any! But she did. And then they took her away. Scariest most terrifying 4 days of my life.I will always remember the ride in the ambulance. The first time I heard Epidermolysis Bullosa. The images we saw online.. I can't believe it will be a year on Saturday. A year of Brystal <3 A year of watching my family grow! A year of EB....

I am so thankful for what this is teaching me and what I continue to learn. Not a day goes by that I don't wonder why Brystal has to endure such a horrible painful life. Not a day goes by that I wish they would find a cure already. So many babies are being born recently with EB. It is heart breaking. I hate knowing that every single one of them is going through what we went through. I do not wish that upon anyone. So many people take things for granted and don't appreciate what they have. No one expects to have an unhealthy newborn. It just isn't something you see in movies or hear about until it happens to you or someone close to you.

Saturday we are having a party for Brystal. I am so excited. I am also sad. Where has this year gone. I think having so much to deal with makes the time fly by! I can't believe I haven't worked in over 6 months. Sophie and Emily are so excited to eat cake for Brystals birthday. It is so cute to see how much they love their littlest sister. The girls are such great big sisters for Brystal. And Brystal LOVES them. She can't get enough of them.

So in October we had an awareness event and the hospital tried to raise money for the EB Clinic ( Not sure how that part went) But we were asked to give a speech... I was beyond thrilled. I got up there and 3 sentences in started bawling my eyes out! Luckily Brendan was there to save me! I was so mad at myself. I really really wanted to tell Brystals story and talk about how AMAZING everyone is at PCH. We were able to get pictures with a lot of people. We even got a group photo with Brystals entire derm team! I am waiting to get a copy sent to me. I will definitely post it as soon as I get it. Dr. Price is the best doctor ever! And Nurse Kellie is just plain amazing. I love everyone there. We couldn't ask for a better team.

Ah I have so much more to say but I don't want to drag on and on and bore you to death! But I promise to write a whole post about Brystals birthday! Stay tuned!

OH! I just wanted to say thank you to everyone who donated to our fundraiser! You guys blow me away! You guys raised over $4000! That meant the world to us. It really helped us a lot. We got a few things paid off with that money. It was much appreciated. It was a start for us to get back onto our feet! We love you all!

This is what her leg looks like today 11/8/12

This was her tongue last month :(

We celebrated her birthday tonight even though it was daddy's birthday :)

<3

We had a cyst removed on her leg last week. This is the cut they made.

:)

They are amazing together! <3 these girls!!

Naked baby!

Happy Halloween!!!!!!!!! <3

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: www.indiegogo.com/bandagesforbrystal

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 :)

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! www.sobeckiphotography.com

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. www.indiegogo.com/bandagesforbrystal

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 :)



And EB strikes again!

EB is taking a lot out of me lately. I don't know what is going on. I have just been so depressed. I know I should be so happy with everything Brystal is accomplishing, but EB is making life HELL. Since Brystal has started crawling last week she is now trying to stand. As a mom I should be thrilled that she is making so much progress. She is doing so much better then what we predicted when she was first diagnosed. Don't get me wrong. I am so proud of my butterfly. It is just now that she is trying to stand she is getting hurt a lot more. I feel like one of those over bearing moms that don't let their child have any fun in life because I am so freaked out. So I decided to let Brystal try and stand....... BIG mistake. We have hardwood flooring and bandaged DO NOT grip the flooring at all and she slips all over the place. Well she slipped and rubbed her head against the book shelf and instead of a little bump or little scratch, her skin slipped back and she has two cut marks on her head. Have I mentioned how much I hate EB lately?! I just want one day of not having to worry about anything associated with EB. Not just for me but for Brystal as well.

She just can't seem to catch a break. I wish there was something I could do for her. She keeps falling over and hitting the back of her head. I am about to bubble wrap my entire house!!! Her sides are at it again. I picked her up to move her away from the book shelf for the 100th time today and her arm pit slipped. It feels like I am sliding a glove off her skin. I know this feeling oh too well. She screamed her pain cry which I know oh too well. It is the WORST feeling in the world knowing that I, MYSELF caused my baby so much pain. I absolutely hate her pain cry. If I am not in the room with her and I hear it I go running! Not everyone knows the difference between her cries so I over react at times. No one understands.. Knowing that your child is in pain and there is NOTHING you can do to make it better is one of the worst most horrible feeling you can feel.

I have noticed a lot more people staring at her lately. I don't know if more people are staring or I am just now noticing it. It is driving me nuts. I can't stand it. I just want to walk up to the people and say, "Hi. Yes my daughter has a skin condition. Do you have something you want to say or would you like to keep staring at my innocent baby?" I have Psoriasis so I am used to people staring at me, but I absolutely HATE when people stare at her. She can't talk. She can't educate people so I have to do it for her. I just don't understand why people think it's okay to stare at her. Like hello! I see you staring. It is just plain rude!!

Oh and on top of our horrible depressing week I have been going rounds with her supply company. They are sending us a bill for $1400 and I can't even get our order in! I am so freaked out. I can't NOT have bandages. It is not a choice. I called her Nurse at the hospital and she is giving us enough to get through to Tuesday and we might have to start ordering from another company. We can't afford to pay for the bill from the other company though. It is kind of humorous to see peoples comments on things thinking that we get all the help in the world. Our insurances don't cover everything. There are things that we have to pay out of pocket. People don't understand how expensive EB can be. I have gone rounds and rounds with insurance and coverage. I swear we have more medical bills for Brystal in the 10 months she has been alive then we do for Sophie and Emily for their entire lives. No kid should have to go through what she has been through. And the sad part is that there are babies out there that have/ are going through a lot more and have to pay for a lot moe then we do. No one knows! Not enough people know about EB. Its devistating to be a parent of a Butterfly Child and know that your child will always be in pain. Or that your child won't have a easy childhood. I wish so so sooo bad that they could find a cure every day! I love Brystal so much and its the worst feeling in the world to watch her suffer. I just feel as if I am not doing enough. That there is something I should be doing to help! Not just her but ALL the EB sufferes :/

I am so sorry that this post isn't a happy, upbeat post. Just needed to vent. We have been through a lot these last weeks. I just wish people could understand more. I just hate reading comments or post and someone thinking that they know more then I do and they don't know a single person with EB.  Ya I have only known about EB for 10 months but we have learned so much. We are over whelmed with EB facts and methods. I don't want people that read my post to think that I can't handle EB and Brystal and my family. I wouldn't trade any part of my life for a new one. I feel that having Brystal has opened my eyes to the real world and made me a better mom and person. I have been so productive these last weeks. I don't know what it is but I feel like I can't just sit here day to day sulking. That is going to get me no where. I love how much I get done in the mornings with my girls. I feel like super mom some days :)  And Brystal is the happiest babies. She does not let EB stop her. She is a very determined baby! I just love how she it doesn't hold her back. The strongest baby I have ever met.

I hope every one has a great weekend :)

Brayce :)

Almost standing :)

We have a crawler :D

Brystal is officially crawling as of Monday! She is so darn cute. I can't believe she is crawling. My little baby is growing up way too fast. She is the cutest crawler ever. She uses one leg to push up like she is trying to stand and slides her left leg (her bad leg) under her butt. It is so odd but so cute..

The down side to her crawling? Her hands are blistering so bad! I am going to have to start wrapping them again! Which is a task! When she was first born it would take me 45mins to wrap them :( I am dreading it! I called and spoke with Brystal's nurse and she is ordering her these special gloves. I am hoping they get here Monday! Brystal is hating grabbing things now because of he blisters. Her palm has a blister that no matter how many times I pop it, it just keeps coming back!

I took Brystal in to the doctor last week and had a culture of her ear taken since there was a MRSA outbreak in the family. I was sooo worried since her ear was soo raw. Well the culture came back negative and her ear looks 10x better. She has a follow up tomorrow since she is still putting her thumb in her ear. But I am not too worried about it. She is doing a lot better. I am so freaked out about MRSA though! I am sanitizing everything and making sure everyone washes their hands and NO ONE is touching Brystal without hand sanitizer!

So back in February 5 days before we moved into our new place we had an interview with Social Security for Brystal. Well I called religiously and I told them when we had the interview that we were moving and what not and gave the guy our new address. Well I hadn't heard a single thing from them. Not even a letter of denial! I would call our case manager once a week and he never returned my calls. Well I figured since it has been 7 months that I should have gotten something in the mail. I finally got a hold of someone rather then our case manager and found out that she was approved March 1st, 3 weeks after applying! They suspended out account because we weren't turning in the info that they sent out through the mail! The lady said my case manager didn't update our info correctly but she fixed all of it!

I am soo happy! After all the bad news and what not I have been getting and all the bs I have been dealing with, this made my day a million times better. I try not to post too much about Brendan and myself's personal lives, since this is a blog to update people about Brystal and speading awareness for EB. I want people to know that EB isn't the easiest thing to live with. Having a child with EB is hard , not only on myself but all of us. I do everything I can for Brystal. She gives me hope. When I am having a bad day she knows how to make it better. She is definitely a mamas girl <3

Again we would like to thank EVERYONE that has been there for us. Not just our family but everyone who has helped spread the word about Brystal. I would also like to send a very special thank you to Annabell S. She sent us a special gift not only for Brystal, but for Sophie and Emily as well. We really appreciate you all :) I hope everyone has a GREAT weekend!

First Oreo! Let's just say this will never happen again! WAY TOO MESSY! lol

Best big Sissy's Brystal could ask for <3

LOVE love Love this picture :)