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 :)
What do you for bandage changes medicine wise? We've been through a lot of different things...right now Brody takes Atarax for itching 4 times a day (make sure one of those is time for bandages), Neurontin for additional pain 3 times a day (make sure one is timed for bandages), ibuprophren 4 times a day (1 for bandages) and also at bandages Tylenol/Capitol suspension with Codeine. This combo of each day as well as during bandages seems to be helping a lot and has made bandage changes so much more tolerable for all involved.
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