Thank you KGUN 9!

So Brystals story aired last Sunday night and again Monday morning and the amount of support we have received has been amazing! I just want to thank everyone who has read our story or watched her video! We couldn't be more pleased with the outcome! It was more then we could have asked for! Her story has been shared on several websites. One was even in the UK! I can't believe it! It makes me the happiest mom to know my daughters helping spread so much awareness for EB.

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!

Brayce :)

Update for July -Now

I am so sorry I haven't posted an update since June. These last few weeks have been so crazy for us! I haven't found a job yet. It's so hard with the hours that I need. Sophie started preschool last week so that has been keeping us pretty busy! lol But let me tell you a little about what Brystal has been up too!

She is almost crawling!!!! I am so proud of her. She is so so close. She got herself up on all fours for 10 seconds and as soon as I got my phone out to take a picture she laid right back down. She is starting the rocking motion. and she scoots herself backwards. I give it a week or two! She is also trying to walk. She pushes herself around a little bit in the walker. She also will hold your fingers and walk around. Surprisingly she hasn't blistered on the bottom of her feet. She makes all of us so proud!

I tried so hard to get the picture of her on all fours lol

Almost there!!! Soo close!

Leg warmers!

She is growing up so fast! She had her 9 month check up on Tuesday and she now weighs 18lbs 4oz! Definitely thriving! lol. She also had her hearing test done on Wednesday since she wasn;t able to have it done when she was really little since it involved adheasive being stuck to her skin. She passed :) She did so well getting the test. I wish I would have been able to get pictures since she looked so cute with ear plugs in.

An update with her sleeping and itching! So they put her on Doxepin which is normally prescibed for anti depressants but also helps with itching! Well, they started her off on 1/2ml and has been uped 1/2 a ml every so often until we can get her to stop crying for hours at night because she is itching so bad. Well right now we are at 3ml. They said that if we up it too much we will have to have a EKG to monitor her heart. I am hoping that we don't have to up it anymore. She seems to be doing better with it at 3ml's but I hate having her on it because it knocks her out. She will be playing and all happy and once it hits her, it is like she has a bobble head. She tries fighting it but never wins. I am happy she is able to sleep at night though. I know Brendan likes it since he wakes up so early and her waking up at 1am and being up for several hours wasn't his idea of a good time lol.

As for her bandage changes! She was doing sooo good for awhile. Wasn't crying or anything like that. Well Idk what happened, but her leg bleeds every time and she does her horrible pain cry. I have to lean over our tub and almost hug her while we bathe her so she won't freak out! She used to love being in the water playing with her toys, but not now :/ I wish I knew what was going on. If only she could tell me. Just a matter of time I guess. But when we get her out of the tub and do her bandages she is so happy. One of the girls preoccupies her or she looks out the window. It probably takes me 10 mins to wrap her legs and get her dressed! It's a lot less exhausting then when we first brought her home. It would take us a hour and half to get it done. That wasn't counting the prep of gettting her bandages ready and bath. All in all it takes me about 20-25 mins from start to finish. To someone that doesn't have a kid with EB that probably seems like a long time to be giving your kid a bath but to us parents with EB children this time is crazy fast haha.

Her left leg just does not want to heal!

This was her side from being picked up and the humidity!

Brystal is starting to say words now as well. Only a few of us have heard her say Hi. I swear she says it! lol. She also says Mama, Dada and Baba (bottle). She loves to wave! It is so cute. She gets the biggest smile on her face and just waves her whole arm. She also started giving kisses! It is rare but happens. Only when she is in a good mood though! Not everyone has witnessed this yet. I get the most kisses when we are at the gym and she is in kids club and I pick her up. Omg she gets the biggest smile when she sees me. It definitely is one of the greatest feelings ever!

Okay I don't want to bore you by writing too much! So one last thing! We filmed an interview with the news station in Tucson this morning and it is airing tonight at 10pm! I will definitely post a link up here for all of you amazing people to see! I can't wait to spread even more awareness! Brystal did amazing. Just smiling and playing! Waving at everyone. Happiest baby! lol

I hope everyone is having a great weekend. I will post again soon!

Brayce :)

Loves to smell all her food.

Happy baby at the Dr

Play time :)

Work... again? :(

After a talk with Brendan we decided that it is best if I look for a job. We aren't getting the help that we expected to help us pay for our bills and the money I have saved up is depleting fast! I hope I can get a job quick! I am thinking about calling my last job and seeing if they would take me back but I feel bad since I left them! I really don't want to go back to work. I love being home with the girls. I wish there was a way for my to stay home longer with them :(

We had a really rough bandage change yesterday. Brystal hasn't been feeling good lately and has been VERY itchy! She rubbed her legs together and tore off skin from both legs! Her leg that was born without skin also looks HORRIBLE! She has an infection as well. I feel like this leg is never going to heal! It just keeps getting worse. I don't know what to do with it. There was blood all over yesterday. I couldn't believe it. She wouldn't stop crying either. It wasn't fun. I just wish she would grow out of it! She also go a spot right where her diaper sits on her back/butt. I have to coat it with aquaphor and put gauze over it and then put her diaper on. If I don't do this or it dries out before I am able to change it, the sore dries to the diaper or gauze and is very painful for her. It sucks. I hate when she does her pain cry. She is too young to understand that I don't mean to hurt her.

On a good note we haven't bandaged her arms in a week and they aren't blistering! I am so proud of her. They look great. Her arms get pink in a few spots but no blisters! She seems to like them off as well! It is just so weird seeing her without her arms wrapped! They have been wrapped for more then half her life. Bandage changes are quicker for us as well :)

We are taking her swimming this weekend for the first time! I can't wait to see how she does. I am so excited.. and nervous! But more excited! I can't wait to see what she does and how she reacts! She loves to play in her bath so I am hoing she loves the pool as well!

Oh so I forgot to tell you guys that a few weeks back Brystal lost her thumb nail! It was so bloody and blah! It ripped off b/c of a blister that had formed underneath it. I called her nurse to ask for advice (since I was freaking out!) and she said that since the entire nail came out from under her skin that it probably won't grow back! I cried after getting off the phone with her. You can't even tell her thumb nail isn't there but she has enough to worry about growing up. Now she doesn't have a thumb nail. It really makes me sad! I wish there was something I could do for her...

I will post another update soon! I hope everyone had a great weekend!

Brystals version of tummy time lol

Our girlies :)

Love her eyes in this picture! <3

Brayce :)

Just a little update! :)

Sorry it has been so long since I've posted. Things have been pretty chaotic lately. Brystal is doing great though. She was approved for Arizona Long Term Care and that is going to help us out so much more! I am so happy we were approved. Brystal is doing so well with her baby food. So far she loves pears, peaches and sweet potatoes!

We had the EB Clinic last week and they are happy with her progress. They think she is doing great. They only want us to do more tummy time to help her learn to crawl. Brystal HATES tummy time though. It isn't fun for both of us. Her left leg (the leg born without skin) is healing really well. It was getting really bad and had opened up again and was infected for awhile but her Dr said it is looking so much better. They prescribed her medicine because she has been so itchy lately. So far its working. She seems to be happier as of lately. She had a great bandage change when we were at clinic as well! I was amazed how well she did. It was probably all the attention she was getting lol.

We had family pictures done not too long ago and they came out so well. Brystal did soooo good! She just sat there and let them take her picture. She is sitting up so well, holding herself on her own. She is also holding and grabbing things. It is pretty amazing how well she can hold stuff and not get a single blister on her hands. She has had only 1 in about 2 months since we quit wrapping her fingers! JUST ONE! It makes me so happy! The back of her head isn't blistering as much as it used to either. It is like her skin is getting tougher and it's taking more to cause problems for her. Which is great for us and Brystal!!! She is such a trooper. She is sleeping so much better too. She's starting to sleep all night! Its so nice for all of us lol.

Brayde, Emily, Brystal, Sophie and Collin <3

Emily!

<3 My FAVORITE family picture! <3

Brystal!

Sophie!

So back in April we had bought a puppy and he is so stinkin' cute and we just love him.. But over the weekend he got too excited and scratched her leg and then jumped in her car seat. So we decided that it's for the best if we give him to less fragile home. He is such a good dog! I don't want to get rid of him but Brystal is more of a concern for us. It's crazy because he has been doing great with her. I don't know what is going on but it is for the best. I know that Sophie and Emily are going to be so sad. They LOVE him.. Maybe we will just stick with fish.Lol.

Brystal has been sitting up so much lately! She LOVES to sit! It is so cute. She sat in her bath tub for the first time late week. She was so happy. I am proud of her for sitting up in the tub. I have heard horror stories of EB children not being able to sit in the tub because it causes such tremendous pain :(  But Brystal just wants to sit all the time. She has been sitting up in her stroller when we go out and walk to the park. She even sat in the grocery cart for the first time. She is growing up so quick!! It's bitter sweet! I just want her to stay small forever lol

Out shopping!

First time sitting up in the tub!

1st time sitting in the cart!!

LOVE this picture of her lol

Well I am going to try and post updates better then I am currently doing. Lol. Sorry to whoever waits for a new update! It's crazy how time flies! I hope every one had a great Father's Day! Brystal was so happy yesterday! Perfect day :)

She had torn apart all her bandages! Lil punk lol

Brayce :)

Busy busy busy!

Yay! We are having a pretty good week :) Brystal is such an amazing little miracle. I swear everything she does makes me over joyed. She has been on baby food for about two weeks now and she is finally starting to open her mouth to eat! I am so happy! The past two weeks haven't been the easiest trying to get her to eat. She hated the whole baby food idea! It was not a fun experience. But not I love it! I was so worried the spoon was going to cause her blisters but I made sure to get the extra soft ones. It is working out great! She is finally on a great routine as well! She let's me sleep in till almost 9! That is if Sophie doesn't wake up!

Last weekend we had Sophies 4th bday! It was so much fun! And it turned out pretty amazing! Sophie had a blast! I cannot believe my little one is 4 :) It is just crazy to think about! I planned her birthday party for 3 months! I can't believe it went so quick! Sophie got so many Rapunzelle toys for her birthday! It turned out perfect. Everyone there made it that much better.. Now to plan for Brystals 1st birthday! I CANNOT WAIT! First birthdays are the best! And with having 6 months to plan.. Oh the things I can do! :D

Okay so as of lately we have been HATING bandage time. It is the worst 45mins to hour and half of our (Brystal and myself) lives. Brystal has become so itchy and her pediatrician said to give her benadryl to help with the itching and it doesn't do anything! I feel so bad. She rubs her left foot ontop of her right foot! She ripped the skin off pretty deep the other day and there was blood every where. It was horrifying. I am starting to become faster at her bandages. It is very difficult since I have to wrap and seperate her feet so she won't rub. I spoke with ner EB nurse Kellie and she said they are going to discuss the medicine with us to stop the itch in June for the next clinic. I hate to wait another 2 weeks.. Maybe they can call in a perscription or something for her. She used to love being in the bath water and now she cries the whole time. She isn't happy till after she is fully wrapped again and relaxed with no one messing with her. But other then bandage changes she is doing great. She loves to stand her activity play. She is starting to learn how to make her toys go off and grab them. She is holding herself when she is sitting on the floor. Oh that reminds me. She had a physical thereapist come out last week and she said all things considered she is up to par for her age. She said there really isn't anything for us to worry about just yet. We just have to practice her sitting on her own and more belly time.. Brystals favorite haha.

My real dad came into town for Sophies birthday and stayed with us. It is the 2nd time he got to see Brystal and she kept grabbing his beard. It was so cute. He helped out a lot with setting up Sophies bday and watching Brystal so I could get things done. It was a nice little break for me.

So last month I ordered this kit for the I Refuse campaign and it came in yesterday! It is so amazing! Christie Zink set it up and she did such an amazing job! We received shirts and cards with pictures of select chidlren with EB and a few that have passed away. On the back of the cards had the childrens stories and explained EB. Brystal was on the cards :) I get to pass these amazing cards out to people anytime they ask about her. I handed out my first one today at the store. I love that they get this card. Not only do I not have to repeat it for the 100th time and explain to them "no she is not burnt" but when you hear about Epidermolysis Bullosa you are not going to remember it.. having these cards with it written down and explained they can remember it and maybe even pass it along or show someone else. It makes me excited. If I can pass out all these cards.. Oh the wonders it will do and all the other people that ordered the kits! So many people can learn about EB!! There was also a shirt in the kit. They are so beautiful! on the front it says I refuse and on the back in the shape of a butterfly it has the children names with EB as well as one that have passed away.. I am in love with them! I will have to post a picture of them for you all to see. We might be able to order more kits as well as shirts. They might open it back up. I sure hope they do so I can order more shirts.. Maybe even more cards!

Brystal is about to wake up from her nap so I better go! Thanks again to who ever reads my post and whoever is teaching someone else about EB. Not enough people know and understand it.. So thank you :)

I love how her eyes stand out soo much in this picture :)

So here is a picture of the kits and the front of the shirt :)

Brystal and my real dad! Grabbin' that beard :)

Sophie getting ready for her birthday party !! <3

Sophie and Lanie at Sophs party

Sisterly love :)

Hope everyone has a safe and wonderful memorial weekend :D

One week down!

So it has offically been a week since I quit working! It's so crazy to think I don't have to wake up and get ready and head to work anymore. I know this won't last forever and I will eventually have to go back to work but right now this this right here is the greatest feeling! I love knowing that each day is a new day to enjoy with my girls. I had time to read a book! I haven't had time to read since before I was pregnant with Brystal! Granted I am only half way done with the book, but I've read over 400 pages! Who would have thought that I would have had time for that? Definitely NOT me! The girls and I have been taking walks to the park and swimming. Sophie rides her bike every morning even if its just around the block or to the park! She is loving it. I am too! I love being able to take her out and let her be a kid! Brystal enjoys the walks as well. We have been going early afternoons before it gets too hot for Brystal to be out.

So this last week flew by. Probably because I had to much fun staying busy with the girls. We got a lot accomplished. Thankfully no doctor appointments. Saved all those for this week lol. Brystal has an appointment with AZLTC and they are going to examine her to see if she qualifies for medical bill assiant which I am PRAYING she does since today I received a bill for $989.23! And that was for ONLY a one month supply of her bandages! I just couldn't believe it cost that much. Thankfully Brendans insurance is better then mine was. Hes covers it so I am not entirely sure how much our monthly bills will be!! But definitely nothing like this one!

Brystal has been doing a lot better these last few days! She has been soooo happy! She seems like she is only cranky when shes tired, hungry or needs her diaper changed. It makes me wonder what she would have been like without the EB.. I wonder how much more happy she would have been! We bought her a high chair since we have to start baby food Thursday (she'll finally be 6months!!) and she loves to be in it. She just sits in it all big smiles! She would probably sit there all day if I let her. Listening to her nursery rhymes and enjoying her toys.

I am just so worried about feeding her baby foods. The doctor is really worried about her being alergic to so many things considering myself and Brendan are alergic to a lot of foods. He is also worried about the food causing problems in her throat. I am HOPING it doesn't cause blisters. It terrifies me! It is one of my bigger worries. I guess I have a lot of worries with EB.. Just some are more hightened then others. Brendan is worried once she goes to school how other classmates will react to her. That right now is the least of my worries. I think that since I have Psoriasis that I know what she will go through in school and having gone through it we will be more aware of things. But Brystal is so much more tough then anyone I know.


Last week I read an article that a lot of other EB moms were passing around on FB an it was talking about raising a special needs child. It was so nice to read it and realize what I was feeling wasn't out of the norm and that others felt the same way as me. She mentioned how emotionall draining it is and how you can get 12 hours of sleep and still be tired. And how she is jealous of other parents who have "healthy" babies. I feel like parents with healthy babies have no idea how lucky they are. I thought I had it hard with Sophie when she was colicky. I hear these parents complain about gas, colicky, acid reflux and other things and I just want to yell at them. Say, " HELLO! Be grateful that is your ONLY problem! BE HAPPY that your child doesn't go through half the pain that Brystal or any other EB child goes through!!!"

Okay so now I am ranting! Lol I had a very long day yesterday and today to think about other parents and listen to them complain. I will stop now. I just wish people were more grateful for things. I am by far so grateful for Brystal. She is my miracle baby. I honestly feel like she was sent to me to show me what life is really about and to show me the true meaning of love and life. I wouldn't trade one day, one moment not even a bandage change for an easier life. A life without Brystal.

Brystal Loves her puppy Tank <3

She is getting so big :)

Sophie and her bestest friend Lanie!!

HAPPY BIRTHDAY DELANIE!!! We <3 you!

Love always:

:) Brayce (:

Brayce (:

Latest Update!

I am so sorry I haven't written in so long! Things have been so hectic lately!! So let me update you!

Brystal had to change formulas again! This is the 5th time. Now she is on Elecare. I'm not sure how she is doing with it since we've only been on it since Thursday! We can't even get it at the store like other formulas. We have to order it through a pharmacy. Brystal saw a GI Specialist last Thursday and he was really nice and handles all of the EB children for the hospital. We had been giving her cereal in her bottle at night and he wasn't too happy about that. I didn't think it was so bad since her Pediatrician said it was okay. The cereal has milk or soy in it and it emflamed her esophagus so it was like starting all over again. (IDK if I've mentioned but she has SEVERE acid reflux!!) So now we are no longer using the cereal! He wants us to try baby foods when she turns 6 months which is in 9 days! I am so nervous! I am worried that it will cause problems. Her GI doctor ordered for her to have a swallow study since baby food could make it worse! We did the test today. She looked so cute in her little gown at the hospital. The test only took 2 mins! And they didn't find any restrictures in her throat! YAY!

Brystal has been blistering so much more frequently! I feel like we have a new sore everyday! She has been even more fussy then before! It has been very exhausting. So Brendan and I sat down and had a long talk. We decided that it was best for her if I stayed home. So I put my two weeks in and my last day was Friday! Its been so crazy these two days home! We have been trying to get everything finished! I have got to admit I love it! I know it has only been 2 days but I love spending time with my girls. It is nice to not to have to rush in the morning to get ready and come home from work make dinner and rush through play time and bed! I feel as if a weight has been lifted off of me. I don't have to stress out about work or missing out on my girlies growing up!

Last month we had a EB Social for the hospital and we got to meet other families here in Arizona. It was a lot of fun! It was nice to meet other families that are going through or been through what we go through! The kids were so adorable. We went to the Botanical Gardens. There is a butterfly exhibit there. It was pretty neat to see all the butterflies. I can't wait to see the pictures that were taken!!!


I know I am leaving some things out but I cannot think at the moment! I am going to try my hardest to post more often :) I should be able too since I'll be home all day with my babies! Have a great night! I hope I didn't keep too many of you waiting for an update!