Thursday, September 6, 2012

We have a crawler :D

Brystal is officially crawling as of Monday! She is so darn cute. I can't believe she is crawling. My little baby is growing up way too fast. She is the cutest crawler ever. She uses one leg to push up like she is trying to stand and slides her left leg (her bad leg) under her butt. It is so odd but so cute..

The down side to her crawling? Her hands are blistering so bad! I am going to have to start wrapping them again! Which is a task! When she was first born it would take me 45mins to wrap them :( I am dreading it! I called and spoke with Brystal's nurse and she is ordering her these special gloves. I am hoping they get here Monday! Brystal is hating grabbing things now because of he blisters. Her palm has a blister that no matter how many times I pop it, it just keeps coming back!

I took Brystal in to the doctor last week and had a culture of her ear taken since there was a MRSA outbreak in the family. I was sooo worried since her ear was soo raw. Well the culture came back negative and her ear looks 10x better. She has a follow up tomorrow since she is still putting her thumb in her ear. But I am not too worried about it. She is doing a lot better. I am so freaked out about MRSA though! I am sanitizing everything and making sure everyone washes their hands and NO ONE is touching Brystal without hand sanitizer!

So back in February 5 days before we moved into our new place we had an interview with Social Security for Brystal. Well I called religiously and I told them when we had the interview that we were moving and what not and gave the guy our new address. Well I hadn't heard a single thing from them. Not even a letter of denial! I would call our case manager once a week and he never returned my calls. Well I figured since it has been 7 months that I should have gotten something in the mail. I finally got a hold of someone rather then our case manager and found out that she was approved March 1st, 3 weeks after applying! They suspended out account because we weren't turning in the info that they sent out through the mail! The lady said my case manager didn't update our info correctly but she fixed all of it!

I am soo happy! After all the bad news and what not I have been getting and all the bs I have been dealing with, this made my day a million times better. I try not to post too much about Brendan and myself's personal lives, since this is a blog to update people about Brystal and speading awareness for EB. I want people to know that EB isn't the easiest thing to live with. Having a child with EB is hard , not only on myself but all of us. I do everything I can for Brystal. She gives me hope. When I am having a bad day she knows how to make it better. She is definitely a mamas girl <3

Again we would like to thank EVERYONE that has been there for us. Not just our family but everyone who has helped spread the word about Brystal. I would also like to send a very special thank you to Annabell S. She sent us a special gift not only for Brystal, but for Sophie and Emily as well. We really appreciate you all :) I hope everyone has a GREAT weekend!

First Oreo! Let's just say this will never happen again! WAY TOO MESSY! lol

Best big Sissy's Brystal could ask for <3

LOVE love Love this picture :)


  1. Bless you and your family. I have a son with EB Simplex. You are right no one understands the pain and expense that associated with this skin disorder. As much pain as my son expereinces with the simplex variety I can not imagine your sweet daughter's. Bless you all.

  2. Hi, I sent you a message on your FB page. I hope you take me up on my offer :)