Sunday, February 19, 2012

Very long week!

SO its been a week since Ive posted and a lot has happened since! First off we moved! Yay! No more being crowded in a tiny apartment. With all of Brystals supplies every where I am so happy to be in a bigger place where her bandaged are now localized in HER room :) No more bandage time on the dinning room table! We can actually eat on it!! I am so happy! And the Sophie and Emily love it as well! So all in all it was a good choice for us. Also, Brystals story didn't air on KVOA yet! They pushed it back AGAIN! The guy said it should air on February 21st now! SO lets keep our fingers crossed. I sure hope it does.

So back in December we were chosen for a Christmas Wish here in Phoenix and we received a lot of help and free gifts for the whole family. The radio station holds this thing where people write letters and tell about families who need help during the holiday seasons and someone wrote one about Brendan and I and how Brystal was born with EB. Well they did so much for us. And one thing in perticular they did was give us tickets to a Phoenix Coyotes game and a meet and greet with the players. (we are HUGE fans!) So we did that last night! Brystals third game :) She does so well there. She is definitely a hockey fan! We had a blast. A huge thank you to Rich Narin and 104.7 KISS FM for doing this for us! It was an amazing experience!

Brystals EB seems to be getting worse. We are back to wrapping her fingers again. two fingers looked like they were sticking together so I freaked out! I am deathly afraid of them webing then fusing! EB sucks. I wish there was some magic pill we could give her to make it all go away. She has an infection on her right hand and one on her foot. It sucks. On a good note! We put Brystal in a pack and play and no more bassinet! So the blisters on the sides of her head are slowly healing and going away! They were pretty bad at one point. I am so worried about her head rubbing on anything now. We were doing abandage change last week and I rubbed her arm with a towel VERY lightly and an instant blister formed! I felt so bad! I couldnt believe it! just one light swipe! I cant belive how easily it occurs.

So tomorrow we are meeting a rep from Hollister Wound Care and I cant wait. She has been so nice and helpful. It should be fun. Hopefully Brystal is up for it tomorrow. She has been sleeping 3/4 of today.. I think her body is trying to heal itself but sucks, She has been so tired lately. But she is sleeping around 7 hours at night so YAY! We have her sleeping on two pillows wrapped in a VERY soft/fuzzy blanket. She seems to do well in it. I am just happy she isnt waking up crying at night anymore.

ONE last thing. So I was at the store picking up a few things and I had Brystal with me of course and this little boy about 9 comes up to me and to tell me I have a beautiful baby. He asked about her owies on her head and I told him she had a very bad skin problem and he asked what it was and I just told him that anything that rubs on her causes horrible owies. So he looks at me and says She'll get through it because you are doing great and he walked away.. <3

Monday, February 13, 2012

First post!!

So I've been wanting to start a blog for awhile and I finally got the chance! I am so excited! So just a recap of what have been going on the last 3 months. Brystal was born 11/10/11 and was diagnosed with rDEB. It has been a pretty bumpy/exhausting/emotional ride.She was also born with Aplasia Cutis (missing skin) on her left leg. She is currently bandaged up on both feet, arms and legs and we have mepilex on her sides to stop the friction. We are in the process of seeing how her hands are doing so we haven't wrapped them in about 2 weeks? 

I am not going to lie. There have been nights where I just cry. EB is not fun to deal with and having a baby born with it, is extremely hard. I know there isn't anything I can do to change it so I accept it. I know that there is a reason that I received Brystal and I couldn't image life without her. The EB community has been amazing! I am so thankful for everyone we have met through Facebook. I don't know where I would be without the support of all of them.

So when Tripp Roth passed away they shared this lovely poem at his funeral...

I Still would have chosen you - By Terri Banish

If before you were born, I could have gone to heaven and saw all the beautiful souls, I still would have cho...
sen you... ... ... If God had told me, "This soul would one day need extra care and needs", I still would have chosen you

If He had told me, "This soul may make your heart bleed", I still would have chosen you

If He had told me, "This soul would make you question the depth of your faith", I still would have chosen you

If He had told me, "This soul would make tears flow from your eyes that could fill a river", I still would have chosen you

If He had told me, "This soul may one day make you witness overbearing suffering", I still would have chosen you

If He had told me, "All that you know to be normal would drastically change", I still would have chosen you

Of course, even though I would have chosen you, I know it was God who chose me for you.

OH! SO tomorrow is Valentines day and they are airing Brystals story on KVOA @ 10pm Arizona time! I can't wait to see how it comes out!

Hope everyone has a great Valentines :)

Love always,
Brayce, Brendan, Sophia, Emily and Brystal