Monday, May 7, 2012

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!!


Love always:
:) Brayce (:
Brayce (:

1 comment:

  1. Your daughter is so sweet & adorable! Thank you so much for sharing with us. I have a healthy 17 mo old & reading your blog & other EB blogs make me appreciate all the "little things" so much more. I will never take for granted any time I get to spend with him.
    I'll keep you & Brystal in my thoughts & prayers.

    Carolyn- St Louis