Thursday, May 24, 2012

Busy busy busy!

Yay! We are having a pretty good week :) Brystal is such an amazing little miracle. I swear everything she does makes me over joyed. She has been on baby food for about two weeks now and she is finally starting to open her mouth to eat! I am so happy! The past two weeks haven't been the easiest trying to get her to eat. She hated the whole baby food idea! It was not a fun experience. But not I love it! I was so worried the spoon was going to cause her blisters but I made sure to get the extra soft ones. It is working out great! She is finally on a great routine as well! She let's me sleep in till almost 9! That is if Sophie doesn't wake up!

Last weekend we had Sophies 4th bday! It was so much fun! And it turned out pretty amazing! Sophie had a blast! I cannot believe my little one is 4 :) It is just crazy to think about! I planned her birthday party for 3 months! I can't believe it went so quick! Sophie got so many Rapunzelle toys for her birthday! It turned out perfect. Everyone there made it that much better.. Now to plan for Brystals 1st birthday! I CANNOT WAIT! First birthdays are the best! And with having 6 months to plan.. Oh the things I can do! :D

Okay so as of lately we have been HATING bandage time. It is the worst 45mins to hour and half of our (Brystal and myself) lives. Brystal has become so itchy and her pediatrician said to give her benadryl to help with the itching and it doesn't do anything! I feel so bad. She rubs her left foot ontop of her right foot! She ripped the skin off pretty deep the other day and there was blood every where. It was horrifying. I am starting to become faster at her bandages. It is very difficult since I have to wrap and seperate her feet so she won't rub. I spoke with ner EB nurse Kellie and she said they are going to discuss the medicine with us to stop the itch in June for the next clinic. I hate to wait another 2 weeks.. Maybe they can call in a perscription or something for her. She used to love being in the bath water and now she cries the whole time. She isn't happy till after she is fully wrapped again and relaxed with no one messing with her. But other then bandage changes she is doing great. She loves to stand her activity play. She is starting to learn how to make her toys go off and grab them. She is holding herself when she is sitting on the floor. Oh that reminds me. She had a physical thereapist come out last week and she said all things considered she is up to par for her age. She said there really isn't anything for us to worry about just yet. We just have to practice her sitting on her own and more belly time.. Brystals favorite haha.

My real dad came into town for Sophies birthday and stayed with us. It is the 2nd time he got to see Brystal and she kept grabbing his beard. It was so cute. He helped out a lot with setting up Sophies bday and watching Brystal so I could get things done. It was a nice little break for me.

So last month I ordered this kit for the I Refuse campaign and it came in yesterday! It is so amazing! Christie Zink set it up and she did such an amazing job! We received shirts and cards with pictures of select chidlren with EB and a few that have passed away. On the back of the cards had the childrens stories and explained EB. Brystal was on the cards :) I get to pass these amazing cards out to people anytime they ask about her. I handed out my first one today at the store. I love that they get this card. Not only do I not have to repeat it for the 100th time and explain to them "no she is not burnt" but when you hear about Epidermolysis Bullosa you are not going to remember it.. having these cards with it written down and explained they can remember it and maybe even pass it along or show someone else. It makes me excited. If I can pass out all these cards.. Oh the wonders it will do and all the other people that ordered the kits! So many people can learn about EB!! There was also a shirt in the kit. They are so beautiful! on the front it says I refuse and on the back in the shape of a butterfly it has the children names with EB as well as one that have passed away.. I am in love with them! I will have to post a picture of them for you all to see. We might be able to order more kits as well as shirts. They might open it back up. I sure hope they do so I can order more shirts.. Maybe even more cards!

Brystal is about to wake up from her nap so I better go! Thanks again to who ever reads my post and whoever is teaching someone else about EB. Not enough people know and understand it.. So thank you :)

I love how her eyes stand out soo much in this picture :)

So here is a picture of the kits and the front of the shirt :)

Brystal and my real dad! Grabbin' that beard :)

Sophie getting ready for her birthday party !! <3

Sophie and Lanie at Sophs party

Sisterly love :)

Hope everyone has a safe and wonderful memorial weekend :D

Monday, May 7, 2012

One week down!

So it has offically been a week since I quit working! It's so crazy to think I don't have to wake up and get ready and head to work anymore. I know this won't last forever and I will eventually have to go back to work but right now this this right here is the greatest feeling! I love knowing that each day is a new day to enjoy with my girls. I had time to read a book! I haven't had time to read since before I was pregnant with Brystal! Granted I am only half way done with the book, but I've read over 400 pages! Who would have thought that I would have had time for that? Definitely NOT me! The girls and I have been taking walks to the park and swimming. Sophie rides her bike every morning even if its just around the block or to the park! She is loving it. I am too! I love being able to take her out and let her be a kid! Brystal enjoys the walks as well. We have been going early afternoons before it gets too hot for Brystal to be out.

So this last week flew by. Probably because I had to much fun staying busy with the girls. We got a lot accomplished. Thankfully no doctor appointments. Saved all those for this week lol. Brystal has an appointment with AZLTC and they are going to examine her to see if she qualifies for medical bill assiant which I am PRAYING she does since today I received a bill for $989.23! And that was for ONLY a one month supply of her bandages! I just couldn't believe it cost that much. Thankfully Brendans insurance is better then mine was. Hes covers it so I am not entirely sure how much our monthly bills will be!! But definitely nothing like this one!

Brystal has been doing a lot better these last few days! She has been soooo happy! She seems like she is only cranky when shes tired, hungry or needs her diaper changed. It makes me wonder what she would have been like without the EB.. I wonder how much more happy she would have been! We bought her a high chair since we have to start baby food Thursday (she'll finally be 6months!!) and she loves to be in it. She just sits in it all big smiles! She would probably sit there all day if I let her. Listening to her nursery rhymes and enjoying her toys.

I am just so worried about feeding her baby foods. The doctor is really worried about her being alergic to so many things considering myself and Brendan are alergic to a lot of foods. He is also worried about the food causing problems in her throat. I am HOPING it doesn't cause blisters. It terrifies me! It is one of my bigger worries. I guess I have a lot of worries with EB.. Just some are more hightened then others. Brendan is worried once she goes to school how other classmates will react to her. That right now is the least of my worries. I think that since I have Psoriasis that I know what she will go through in school and having gone through it we will be more aware of things. But Brystal is so much more tough then anyone I know.

Last week I read an article that a lot of other EB moms were passing around on FB an it was talking about raising a special needs child. It was so nice to read it and realize what I was feeling wasn't out of the norm and that others felt the same way as me. She mentioned how emotionall draining it is and how you can get 12 hours of sleep and still be tired. And how she is jealous of other parents who have "healthy" babies. I feel like parents with healthy babies have no idea how lucky they are. I thought I had it hard with Sophie when she was colicky. I hear these parents complain about gas, colicky, acid reflux and other things and I just want to yell at them. Say, " HELLO! Be grateful that is your ONLY problem! BE HAPPY that your child doesn't go through half the pain that Brystal or any other EB child goes through!!!"

Okay so now I am ranting! Lol I had a very long day yesterday and today to think about other parents and listen to them complain. I will stop now. I just wish people were more grateful for things. I am by far so grateful for Brystal. She is my miracle baby. I honestly feel like she was sent to me to show me what life is really about and to show me the true meaning of love and life. I wouldn't trade one day, one moment not even a bandage change for an easier life. A life without Brystal.

Brystal Loves her puppy Tank <3

She is getting so big :)

Sophie and her bestest friend Lanie!!


Love always:
:) Brayce (:
Brayce (:

Tuesday, May 1, 2012

Latest Update!

I am so sorry I haven't written in so long! Things have been so hectic lately!! So let me update you!

Brystal had to change formulas again! This is the 5th time. Now she is on Elecare. I'm not sure how she is doing with it since we've only been on it since Thursday! We can't even get it at the store like other formulas. We have to order it through a pharmacy. Brystal saw a GI Specialist last Thursday and he was really nice and handles all of the EB children for the hospital. We had been giving her cereal in her bottle at night and he wasn't too happy about that. I didn't think it was so bad since her Pediatrician said it was okay. The cereal has milk or soy in it and it emflamed her esophagus so it was like starting all over again. (IDK if I've mentioned but she has SEVERE acid reflux!!) So now we are no longer using the cereal! He wants us to try baby foods when she turns 6 months which is in 9 days! I am so nervous! I am worried that it will cause problems. Her GI doctor ordered for her to have a swallow study since baby food could make it worse! We did the test today. She looked so cute in her little gown at the hospital. The test only took 2 mins! And they didn't find any restrictures in her throat! YAY!

Brystal has been blistering so much more frequently! I feel like we have a new sore everyday! She has been even more fussy then before! It has been very exhausting. So Brendan and I sat down and had a long talk. We decided that it was best for her if I stayed home. So I put my two weeks in and my last day was Friday! Its been so crazy these two days home! We have been trying to get everything finished! I have got to admit I love it! I know it has only been 2 days but I love spending time with my girls. It is nice to not to have to rush in the morning to get ready and come home from work make dinner and rush through play time and bed! I feel as if a weight has been lifted off of me. I don't have to stress out about work or missing out on my girlies growing up!

Last month we had a EB Social for the hospital and we got to meet other families here in Arizona. It was a lot of fun! It was nice to meet other families that are going through or been through what we go through! The kids were so adorable. We went to the Botanical Gardens. There is a butterfly exhibit there. It was pretty neat to see all the butterflies. I can't wait to see the pictures that were taken!!!

I know I am leaving some things out but I cannot think at the moment! I am going to try my hardest to post more often :) I should be able too since I'll be home all day with my babies! Have a great night! I hope I didn't keep too many of you waiting for an update!