Monday, June 25, 2012

Work... again? :(

After a talk with Brendan we decided that it is best if I look for a job. We aren't getting the help that we expected to help us pay for our bills and the money I have saved up is depleting fast! I hope I can get a job quick! I am thinking about calling my last job and seeing if they would take me back but I feel bad since I left them! I really don't want to go back to work. I love being home with the girls. I wish there was a way for my to stay home longer with them :(

We had a really rough bandage change yesterday. Brystal hasn't been feeling good lately and has been VERY itchy! She rubbed her legs together and tore off skin from both legs! Her leg that was born without skin also looks HORRIBLE! She has an infection as well. I feel like this leg is never going to heal! It just keeps getting worse. I don't know what to do with it. There was blood all over yesterday. I couldn't believe it. She wouldn't stop crying either. It wasn't fun. I just wish she would grow out of it! She also go a spot right where her diaper sits on her back/butt. I have to coat it with aquaphor and put gauze over it and then put her diaper on. If I don't do this or it dries out before I am able to change it, the sore dries to the diaper or gauze and is very painful for her. It sucks. I hate when she does her pain cry. She is too young to understand that I don't mean to hurt her.

On a good note we haven't bandaged her arms in a week and they aren't blistering! I am so proud of her. They look great. Her arms get pink in a few spots but no blisters! She seems to like them off as well! It is just so weird seeing her without her arms wrapped! They have been wrapped for more then half her life. Bandage changes are quicker for us as well :)

We are taking her swimming this weekend for the first time! I can't wait to see how she does. I am so excited.. and nervous! But more excited! I can't wait to see what she does and how she reacts! She loves to play in her bath so I am hoing she loves the pool as well!

Oh so I forgot to tell you guys that a few weeks back Brystal lost her thumb nail! It was so bloody and blah! It ripped off b/c of a blister that had formed underneath it. I called her nurse to ask for advice (since I was freaking out!) and she said that since the entire nail came out from under her skin that it probably won't grow back! I cried after getting off the phone with her. You can't even tell her thumb nail isn't there but she has enough to worry about growing up. Now she doesn't have a thumb nail. It really makes me sad! I wish there was something I could do for her...

I will post another update soon! I hope everyone had a great weekend!

Brystals version of tummy time lol

Our girlies :)

Love her eyes in this picture! <3

Brayce :)

Monday, June 18, 2012

Just a little update! :)

Sorry it has been so long since I've posted. Things have been pretty chaotic lately. Brystal is doing great though. She was approved for Arizona Long Term Care and that is going to help us out so much more! I am so happy we were approved. Brystal is doing so well with her baby food. So far she loves pears, peaches and sweet potatoes!

We had the EB Clinic last week and they are happy with her progress. They think she is doing great. They only want us to do more tummy time to help her learn to crawl. Brystal HATES tummy time though. It isn't fun for both of us. Her left leg (the leg born without skin) is healing really well. It was getting really bad and had opened up again and was infected for awhile but her Dr said it is looking so much better. They prescribed her medicine because she has been so itchy lately. So far its working. She seems to be happier as of lately. She had a great bandage change when we were at clinic as well! I was amazed how well she did. It was probably all the attention she was getting lol.

We had family pictures done not too long ago and they came out so well. Brystal did soooo good! She just sat there and let them take her picture. She is sitting up so well, holding herself on her own. She is also holding and grabbing things. It is pretty amazing how well she can hold stuff and not get a single blister on her hands. She has had only 1 in about 2 months since we quit wrapping her fingers! JUST ONE! It makes me so happy! The back of her head isn't blistering as much as it used to either. It is like her skin is getting tougher and it's taking more to cause problems for her. Which is great for us and Brystal!!! She is such a trooper. She is sleeping so much better too. She's starting to sleep all night! Its so nice for all of us lol.

Brayde, Emily, Brystal, Sophie and Collin <3


<3 My FAVORITE family picture! <3



So back in April we had bought a puppy and he is so stinkin' cute and we just love him.. But over the weekend he got too excited and scratched her leg and then jumped in her car seat. So we decided that it's for the best if we give him to less fragile home. He is such a good dog! I don't want to get rid of him but Brystal is more of a concern for us. It's crazy because he has been doing great with her. I don't know what is going on but it is for the best. I know that Sophie and Emily are going to be so sad. They LOVE him.. Maybe we will just stick with fish.Lol.

Brystal has been sitting up so much lately! She LOVES to sit! It is so cute. She sat in her bath tub for the first time late week. She was so happy. I am proud of her for sitting up in the tub. I have heard horror stories of EB children not being able to sit in the tub because it causes such tremendous pain :(  But Brystal just wants to sit all the time. She has been sitting up in her stroller when we go out and walk to the park. She even sat in the grocery cart for the first time. She is growing up so quick!! It's bitter sweet! I just want her to stay small forever lol

Out shopping!

First time sitting up in the tub!

1st time sitting in the cart!!

LOVE this picture of her lol

Well I am going to try and post updates better then I am currently doing. Lol. Sorry to whoever waits for a new update! It's crazy how time flies! I hope every one had a great Father's Day! Brystal was so happy yesterday! Perfect day :)

She had torn apart all her bandages! Lil punk lol

Brayce :)