Thursday, May 24, 2012

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


  1. I got my "I refuse" kit too. Christie did a great job on them. I found Brystal through thee cards. Praying for your family and spreading awareness. Your girls are so beautiful. I have 4 of my own. Tripp's life and death introduced me to EB and changed my life forever. I found God again and left an abusive husband for my girls and am looking to the future now. Now that I know of EB I'll never be the same. I love these kids do much. I feel guilty for having healthy children sometimes while moms like you go through what you do. So let me know anything I can do. Anything. I need to compensate for my blessings and help these precious butterflies that have stolen my heart.

  2. Thank you :) And don't feel bad. I have a healthy 4 year old and we didn't know about EB till Brystal came along. She has definitely opened my eyes to different things. And Thank you for getting a kit!! That is all we ask of people to do.. Help us spread awareness! :)