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!

rough couple of days!

Well these last few days have pretty rough on me. We started doing bleach baths not too long ago since we left our hibiclense in Tucson the last time we visited. Well Brystal seemed to be doing fine with it! I was so worried at first! I was all paranoid about the bleach staining everything lol. But it was all good! Then Brystal started to get super fussy and not sleeping at night! I stayed home from work Monday b/c we were up all night and she was just crying. For no reason. She wouldn't even take her bottle! It was definitely exhausting. Come to find out it was the bleach drying out her skin and she was crying b/c she was uncomfortable! We found out we were able to buy hibiclense at walmart! Thank goodness! And we did a bandage change last night and she slept the best she has compared to the last week. So Tuesday she had her four month check up and since she has an infection her side we couldn't get her shots done. So frustrating! So I called the pharmacy to refill her ongoing antibiotics and the pharmacist was worried it wasn't strong enough since she has doubled in weight! Oh by the way my chunky butt weighs 13lbs 10oz! So now we have to have her dermatologist call in another prescription! Her poor side looks even worse! I have to change her side bandages tonight so I haven't haven't seen it today So im hoping it looks some what better. I felt so bad last night doing her bandage change! She was doing her pain cry and it is so hard on me. I don't know why Brystal received EB but it really sucks. I know there isn't anything we could have done to change it but I still feel so bad. I know this is a common way to feel but I can't help it. I wish there was a way for me to stay home with her. I hate how I have to work! I am her mom. I should be the one taking care of her. And id get more time with Sophie too! Id love it. Knowing I was able to spend time with them and be a better mom. I feel like I don't spend enough time with Sophie b/c im always stressed out over brystals everyday needs. Maybe something good will happen to make this possible for us
Well.. I am going to finish making dinner and cleaning up! Hope every one is having a better week then me! :)

EB SUCKS! :)

Blah! So a lot has gone on these last few weeks. Where to start!!! How about a update on Brystal :) She is doing good all things considered. She has been throwing up like no other lately. She has been blistering so much more frequently! Last week she developed a blister on her tounge. I managed to get a picture of her smiling and she would only stick out her tounge all day so the picture makes me laugh. But not everything is making me laugh lately. She HATES when I put her down. She will cry till I pick her up. But holding her is causing horrible blisters on her sides. I have been putting padding on both sides but for some reason it did nothing over this past weekend. Her right side is horrible and all opened and raw. Holding her is becoming torture for me. I love how much she wants to be with me and it makes me feel great knowing I am doing something right that she wants me all the time. But as a mom and having your baby in pain b/c you're holding her is its own hell. I will pick her up and she will stop crying. Its awesome but then as soon as I move her the wrong way or brush her side she screams! I just hate EB so much!!! She is also fighting an infection on both feet. I hate it. Its like 1 step forward 10 steps back. It is taking a lot out of me. I was holding her yesterday and I was walking to her room when I felt my foot get wet. I didnt hve any drink on me and I thought she threw up.. Nope. She had a huge blister that had popped from me holding and leaked all over! I felt like such a bad mom at the moment! Knowing I caused that pain!! We also received the wrong size tubafast (the tubular bandage we use to hold her bandages up since we cannot use tape) and her bandages were just falling right off. Talk about STRESSFUL! She has also been having a hard time at night. She hasnt been sleeping good. She wakes up crying and wont take her bottle. Its frustrating b/c no matter what I do shes in pain. It is very hard to get her to take tylenol. She will spit 3/4 of it out or throw it up! With all the throw up and bandage problems I think we all need a vacation!

On a lighter note we had family pictures done :) They came out so good! I was so proud of the girls! They did great considering they didnt nap and we had to wait an hour! Also we found Brystal the cutest coyotes outfit for the games! I cannot wait to go to tomorrows game with her! This will be her 4th. Brystal also has her 4 month apt Tuesday! So we will see how much this lil girl has grown. Its crazy to think she was less then 6lbs 4 months ago.

We have been through a lot these past 4 months. Its definitely been  roller coaster. I know I mentioned a lot of bad things this post but you should know that Brystal is a very happy baby. She is definitely a tough cookie. She has gone through so much in these last 4 months then a lot of people go through in their whole lives! She is so strong! Its crazy to see her smiling and trying to laugh when you know she is in pain. Makes all the really hard times not so hard :)

For having a blister on her tounge she was full of smiles that day :D

We got one smile out of her!

<3

For some reason one kid misses looking at the camera lol!

Well its late and we are tired! I am going to try to post more often! :) Have a great night!


Brayce :)