Wednesday, March 14, 2012

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! :)


  1. Brayce, stay strong and keep faith. The lord will walk you through this. I wish there was something I could do to ease your pain...I know we don't know each other but I can feel your pain and as a parent I could not even began to understand your pain and the feeling you have watching your baby go through this. Brystal is showing her strength and I hope and pray for a cure everyday. I will keep you and sweet Brystal in my prayers! {)i(}

    I am glad to hear she is sleeping better and hope you see improvement on her side soon!

  2. I'm so sorry that this beautiful little girl has to endure EB. I wish so much that I could do something other then lift her up in prayer. You are doing the best job you can for her and she knows this and knows how much she is loved. I do have a question. When you are working who is able to watch her? I know EB babies have to have special care so I was just wondering. I will continue to keep your family in my prayers and maybe one day your prayer will come true and you will be able to stay home with your BEAUTIFUL little girl!

  3. Bracye, i saw your story on the news last night. And it bought me to tears. To see such a beautiful baby girl suffering for the disease she has. Im a mother of two and truly blessed to have healthy babys. My heart goes out to you and your family. Im a Christian and believe in divine healing in the bible it speaks about how the lord heals the sick. I HOPE you dont take offence of me sharing this with you. In the bible it it speeks about healing read Jeremiah 33:6 James5:14 Luke 17:19 and psalms 30:2. Your story truly touched my heart I am praying for your baby to be healed in the name of the lord Jesus Chirst and i also pray for your family. God bless you baby and you and your family. Sincerely, Crystal if you are interested I invite you and your family to my church the Tucson Tabernacle church on grant and stone were we can pray for healing. God bless