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
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