Sunday, February 19, 2012

Very long week!

SO its been a week since Ive posted and a lot has happened since! First off we moved! Yay! No more being crowded in a tiny apartment. With all of Brystals supplies every where I am so happy to be in a bigger place where her bandaged are now localized in HER room :) No more bandage time on the dinning room table! We can actually eat on it!! I am so happy! And the Sophie and Emily love it as well! So all in all it was a good choice for us. Also, Brystals story didn't air on KVOA yet! They pushed it back AGAIN! The guy said it should air on February 21st now! SO lets keep our fingers crossed. I sure hope it does.

So back in December we were chosen for a Christmas Wish here in Phoenix and we received a lot of help and free gifts for the whole family. The radio station holds this thing where people write letters and tell about families who need help during the holiday seasons and someone wrote one about Brendan and I and how Brystal was born with EB. Well they did so much for us. And one thing in perticular they did was give us tickets to a Phoenix Coyotes game and a meet and greet with the players. (we are HUGE fans!) So we did that last night! Brystals third game :) She does so well there. She is definitely a hockey fan! We had a blast. A huge thank you to Rich Narin and 104.7 KISS FM for doing this for us! It was an amazing experience!

Brystals EB seems to be getting worse. We are back to wrapping her fingers again. two fingers looked like they were sticking together so I freaked out! I am deathly afraid of them webing then fusing! EB sucks. I wish there was some magic pill we could give her to make it all go away. She has an infection on her right hand and one on her foot. It sucks. On a good note! We put Brystal in a pack and play and no more bassinet! So the blisters on the sides of her head are slowly healing and going away! They were pretty bad at one point. I am so worried about her head rubbing on anything now. We were doing abandage change last week and I rubbed her arm with a towel VERY lightly and an instant blister formed! I felt so bad! I couldnt believe it! just one light swipe! I cant belive how easily it occurs.

So tomorrow we are meeting a rep from Hollister Wound Care and I cant wait. She has been so nice and helpful. It should be fun. Hopefully Brystal is up for it tomorrow. She has been sleeping 3/4 of today.. I think her body is trying to heal itself but sucks, She has been so tired lately. But she is sleeping around 7 hours at night so YAY! We have her sleeping on two pillows wrapped in a VERY soft/fuzzy blanket. She seems to do well in it. I am just happy she isnt waking up crying at night anymore.

ONE last thing. So I was at the store picking up a few things and I had Brystal with me of course and this little boy about 9 comes up to me and to tell me I have a beautiful baby. He asked about her owies on her head and I told him she had a very bad skin problem and he asked what it was and I just told him that anything that rubs on her causes horrible owies. So he looks at me and says She'll get through it because you are doing great and he walked away.. <3


  1. Thinking of you and Brystal often. Thanks for posting an update. Praying she has comfort.

  2. Thinking and praying for Brystal and you. She is in my prayers every single night. God Bless you!

  3. Just found your blog on through facebook, although I don't have any children at all I can't even imagine having a child with EB this post made me tear up, because you are doing a wonderful job....I started from the current post and read backwards, it is amazing to me how strong you had become over the prior months when you first started your blog. Keep on doing what your doing, amazing, tough, strong and inspirational is how I would define your family!!!
    New reader from Alabama,