Wednesday, February 13, 2013

We have a talker!

1/24/13
Brystal is such a talker. She learned to say no, but it comes out "na. na." She waves her hand around when she says it too. It is cute now, but it probably won't be in a couple years lol. She just sits playing with her toys and she jabbers on and on. Just talking to her toys. It is the cutest thing ever. She is really becoming her own person. It is amazing to watch. When Sophie was little I had to work full time so I wasn't there like I am now. And I feel like I missed out. I love this stage. Brystal is so independent. It is amazing to watch her do things on her own. I love how she is starting to play on her own and play with her sisters. She loves to play with her sisters. She is always crawling to wherever they are. She has to be with them all the time.

She is also eating more and more every week. We are still trying out the Avent cup. She wouldn't use it for a week or so, but I have been working with her this last week and she is doing a lot better. It is great to see her progress. She is still drinking her bottle, but less and less every day! It is great. She is half on Soy milk and half formula. I'm happy we are finally making some progress. She is seeing her physical therapist once a week and speech/feeding therapist once every other week. We have EB Clinic in February. I can't wait. I have a lot to talk to them about. Brystals PT and I both think she needs braces for her legs. She is pigeoned toed and her legs bow. They say kids normally grow out of it, but Brystal still isn't walking and healthy babies walk at 1 year. I am worried her bones will harden before she can walk fully on her own. 

We had family pictures done over the weekend. I am so happy how they turned out. Brendan and I were worried because the girls were being little pains. Lol. But they turned out so amazing. I should have known since our photographer is amazing herself. I don't know if I mentioned this the last time we did pictures but she contacted us once she saw Brystal on the news in Tucson in August. She said she would do our pictures anytime we wanted free of charge. Which is awesome because pictures are so expensive.

I also finally got a start date for school as well. I don't know if I mentioned it in my last post, but I had a lot of difficulty getting signed up and what not. Well I am starting in March and it is all online. I am ecstatic. I should be done with school in about a year and half. I can't wait. Everything is coming together. Not in the exact order I would like, but hey! Everything has a way of working out. Tuesday I took Sophie and her best friend to school. While in the car Sophie was telling her how Brystal was in my tummy and that she got owies because she bumped too much while in there. And that she is an angel so they have to be good. I thought this was the sweetest thing I have ever heard. She loves Brystal so much and is so proud to tell everyone she is her sister.

Brystal is doing well all things considered. We had a couple of weeks of huge horrible blisters. Last week she was crawling and just started screaming. I picked her up and was consoling her. I couldn't figure out what was wrong with her. The next morning when she woke up she had a massive blister on her thumb. It was so big her thumb looked swollen. She was also blistering so bad right where the top of the diaper sat on her belly. It was not healing. And the wound would stick to her diaper. So every diaper change was horrible and she would scream and bleed all over. It was unpleasant for everyone. Brendan bought diapers last week and they were Huggies new kind and they are amazing! I am so happy they work for her. They are so soft! Her two spots on her tummy are healed almost all the way now.

I just want to thank all of you that read our blog and see what life is like with EB. I know Brystal isn't as severe as some others and that she is doing so well all things considered, but life with EB is difficult and a very long road. Doing bandage changes doesn't get any easier. Seeing your child in pain doesn't get any easier. I am used to the blood and the infection and the SMELL of EB. But what Brystal and all the other babies go through we will never understand.



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2/13/13
So I started the above post last month and am now just getting back to it. Things have been so hectic! Brystal started standing on her own as of last night! I am so unbelievely proud of her. She is reaching these milestones so much quicker then we thought would happen. WE are all proud of her. She is still saying NO. And it isn't as cute as I thought it was a few weeks ago lol. Everything is No. Want to take a bath? No. Want to play? No. No! She says it with such demand and force. It is some what funny lol. When she says no we are now saying YES right back to her. She also learned how to climb onto Emilys bed. I have to keep putting up the baby gate because she no darts to her sisters room to climb on the bed. She isn't too fond of the baby gate.

She is back to not eating again. She will chew on food and then spit it out. She is also doing this gagging/choking thing. She will be fine playing with her toys and out of no where she will start choking. She has spit up a few times from it. After seeing her GI doctor last week he thinks she will have to have another upper GI done and this will be the 3rd one in less then a year. The last one we had the doctor was VERY rude and left marks on brystals legs. I know we won't get that doctor again, but I just hate to put Brystal through that.

Brystal didn't for to EB Clinic this month. Her doctors changed it for next month. I hope we get some answers. Her leg just doesn't want to heal. We are going to ask about skin graphs. We think that it might help her out some. I am hoping the bottom of her feet don't start to blister since she is standing now.

I myself have been over stressed out. We were having such a few good weeks and then it felt like nothing can go right. Brystal standing on her own helped me a lot yesterday. I wouldn't change a single thing about Brystal, but her medical stuff has put a lot on us and at times it is more then exhausting. I don't know how some other parents do it. I feel like I am missing something? They all make it look so easy and what not. Some days are a struggle for sure. There are so many things I wish I could do for the kids but can't. Hopefully something good will come our way. I'd take anything right now. I know the girls are all happy and that is great!! As a parent I guess I just want more for them. I want to give them everything. We are looking into me getting a job on the weekends. That is the only time we would be able to have someone watch the girls. I haven't worked in almost a year. It will definintely take me time to get used to and be away from the girls. Being a stay at home mom has been a blessing. OKay, I have to go. I hope I can do another post soon!!! <3



So proud of herself for getting on it!!

Playing at the Doctor!

Love how our pictures turned out!!


My FAV picture <3

Doctor :)


Best big sisters

Look who is standing!





Brayce :)

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