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 :)


  1. Brystal is beautiful. EB sucks, will be praying for your family.

  2. Brystal, your family portrait is beautiful. Don't ever doubt what a great mommy you are. All EB moms are the best!!! It breaks my heart when I read that you cannot even hold your baby without causing pain. These are the reasons I will fight to support EB research so that these precious babies do not have to suffer. My prayers are with you and your family. Thank you for blogging. It provides others with valuable insight to EB. Don't ever be afraid to write about the reality of EB.

  3. It was so wonderful to see Brystal smiling, that definitely warms my heart. My prayers are with you and Brystal. God Bless you both.

  4. I just love her! She is so darn cute! I just want to tell you that you are doing a phenomenal job! I know its hard to not blame yourself...but, really, you cant help it...EB does suck. I cause blisters on Liam all the time. And eventually you get to the place where you think "Oh, poo...another boo boo! Well, lets get cracking at getting this one healed up" and then it moves onto another spot! So super frustrating. Liam also always wants to be held. He is almost 17 months and he is attatched at the hip still. Only being held by mommy or daddy can make him stop crying sometimes. Just know that these little babies will amaze you with their happiness and strength. They cry bc they have to let you know that they hurt...but they smile bc they have to let you know that they are still happy! Liam is so deeply emotional and sweet, and Im sure that little Brystal comes from the same special emotional place when she cuddles with you! Great job, momma!!! Hang in there!! You are inspirational!