Thursday, September 13, 2012

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 :)


  1. pm me with your address and what u really need for your baby. i will go through mine and see what i can send to u. no ebutterfly needs to go without bandages

  2. I'm so sorry you are having a rough time right now :(. Is she eligible for SSI? She does have a disability, so not sure if you've looked into that. My brother has a medical condition as well, and that check helps him out a lot. I know it takes a while to get through all the paperwork mess, but it could be worth it for the medical bills and care supplies she needs. Praying for you all!

  3. I too am wondering about ssi. She should qualify for a disability and that should get her medicaid. If your income is too high, she should qualify based on her disability.

  4. She did qualify for ssi but we have been.jumping through hoops with them since February! We keep having to paper work after paper work! We are in the process of doing paper work at the moment :/

  5. Ah. I know all about that. Call your local representative and complain if you feel it is excessive. On the plus side, they will backpay from the moment you filed if she qualifies. But to me, Feb is far too long. Do you qualify for the SSi or is your income too high? She may just qualify for only medicaid based her disability. IF so, go the SSI office and get them to give you a quick denial and then go to the welfare office with that form and tell them what you need. Drs will have fill out forms. As me how I know what a pain that all is.
    I have a daughter with autism, epilepsy, and is developementally delayed(mental retardation)

  6. She did qualify a month after we applied and they didn't update our info because I told the guy we were moving in 5 days and he put our old info on there and we didn't didn't get a single letter so they put her account on hold! I even told them I quit my job and the guy didn't update that either!!!