Wednesday, March 14, 2012

rough couple of days!

Well these last few days have pretty rough on me. We started doing bleach baths not too long ago since we left our hibiclense in Tucson the last time we visited. Well Brystal seemed to be doing fine with it! I was so worried at first! I was all paranoid about the bleach staining everything lol. But it was all good! Then Brystal started to get super fussy and not sleeping at night! I stayed home from work Monday b/c we were up all night and she was just crying. For no reason. She wouldn't even take her bottle! It was definitely exhausting. Come to find out it was the bleach drying out her skin and she was crying b/c she was uncomfortable! We found out we were able to buy hibiclense at walmart! Thank goodness! And we did a bandage change last night and she slept the best she has compared to the last week. So Tuesday she had her four month check up and since she has an infection her side we couldn't get her shots done. So frustrating! So I called the pharmacy to refill her ongoing antibiotics and the pharmacist was worried it wasn't strong enough since she has doubled in weight! Oh by the way my chunky butt weighs 13lbs 10oz! So now we have to have her dermatologist call in another prescription! Her poor side looks even worse! I have to change her side bandages tonight so I haven't haven't seen it today So im hoping it looks some what better. I felt so bad last night doing her bandage change! She was doing her pain cry and it is so hard on me. I don't know why Brystal received EB but it really sucks. I know there isn't anything we could have done to change it but I still feel so bad. I know this is a common way to feel but I can't help it. I wish there was a way for me to stay home with her. I hate how I have to work! I am her mom. I should be the one taking care of her. And id get more time with Sophie too! Id love it. Knowing I was able to spend time with them and be a better mom. I feel like I don't spend enough time with Sophie b/c im always stressed out over brystals everyday needs. Maybe something good will happen to make this possible for us
Well.. I am going to finish making dinner and cleaning up! Hope every one is having a better week then me! :)

Sunday, March 11, 2012


Blah! So a lot has gone on these last few weeks. Where to start!!! How about a update on Brystal :) She is doing good all things considered. She has been throwing up like no other lately. She has been blistering so much more frequently! Last week she developed a blister on her tounge. I managed to get a picture of her smiling and she would only stick out her tounge all day so the picture makes me laugh. But not everything is making me laugh lately. She HATES when I put her down. She will cry till I pick her up. But holding her is causing horrible blisters on her sides. I have been putting padding on both sides but for some reason it did nothing over this past weekend. Her right side is horrible and all opened and raw. Holding her is becoming torture for me. I love how much she wants to be with me and it makes me feel great knowing I am doing something right that she wants me all the time. But as a mom and having your baby in pain b/c you're holding her is its own hell. I will pick her up and she will stop crying. Its awesome but then as soon as I move her the wrong way or brush her side she screams! I just hate EB so much!!! She is also fighting an infection on both feet. I hate it. Its like 1 step forward 10 steps back. It is taking a lot out of me. I was holding her yesterday and I was walking to her room when I felt my foot get wet. I didnt hve any drink on me and I thought she threw up.. Nope. She had a huge blister that had popped from me holding and leaked all over! I felt like such a bad mom at the moment! Knowing I caused that pain!! We also received the wrong size tubafast (the tubular bandage we use to hold her bandages up since we cannot use tape) and her bandages were just falling right off. Talk about STRESSFUL! She has also been having a hard time at night. She hasnt been sleeping good. She wakes up crying and wont take her bottle. Its frustrating b/c no matter what I do shes in pain. It is very hard to get her to take tylenol. She will spit 3/4 of it out or throw it up! With all the throw up and bandage problems I think we all need a vacation!

On a lighter note we had family pictures done :) They came out so good! I was so proud of the girls! They did great considering they didnt nap and we had to wait an hour! Also we found Brystal the cutest coyotes outfit for the games! I cannot wait to go to tomorrows game with her! This will be her 4th. Brystal also has her 4 month apt Tuesday! So we will see how much this lil girl has grown. Its crazy to think she was less then 6lbs 4 months ago.

We have been through a lot these past 4 months. Its definitely been  roller coaster. I know I mentioned a lot of bad things this post but you should know that Brystal is a very happy baby. She is definitely a tough cookie. She has gone through so much in these last 4 months then a lot of people go through in their whole lives! She is so strong! Its crazy to see her smiling and trying to laugh when you know she is in pain. Makes all the really hard times not so hard :)

For having a blister on her tounge she was full of smiles that day :D

We got one smile out of her!

For some reason one kid misses looking at the camera lol!

Well its late and we are tired! I am going to try to post more often! :) Have a great night!

Brayce :)