Saturday, August 25, 2012

Thank you KGUN 9!

So Brystals story aired last Sunday night and again Monday morning and the amount of support we have received has been amazing! I just want to thank everyone who has read our story or watched her video! We couldn't be more pleased with the outcome! It was more then we could have asked for! Her story has been shared on several websites. One was even in the UK! I can't believe it! It makes me the happiest mom to know my daughters helping spread so much awareness for EB.

Knowing she is involved in this bring tears to my eyes. We did the story to help spread awareness, not only for a cure but to let people know that it is out there. We don't want other families to go through what we went through when Brystal was born. And I know other families have suffered far worse then we have. I don't want any mom to feel alone ever again!

So again THANK YOU to everyone who has wrote about Brystal. retweeted stories, shared on FB or talked about Brystal to someone you may know. This not only helps Brystal but all the other EB sufferes. All of the EB community thanks you. The power of the world wide web :)

A little update on little miss! She is trying so hard to crawl! We want to skip the crawling stage to save her knees, feet and hands and just go straight to walking, but she wants to crawl! I couldn't be more proud. Just seeing her push up on her knees and hands! She is pushing herself backwards! SOOOOO close! She makes me the happiest mom!

She isn't crying during bandage changes at the moment! She is getting to be so good. She is having problems with us picking her up right now. Her sides heal and blister, heal and blister. On going processes. I hate having her torso wrapped all the time since it is so hot here. But it looks like it could come to that soon. I am getting to the point where I am about to cry when I have to pick her up. She is such a trooper. Just seeing her smile at me after makes my heart melt. Grabbing her out of the tub is a mission lately. I am so worried I will make it worse.

Her acid reflux is acting up again. She freaks out any time we have to lay her down to do anythin. Changing her diapers is becoming a task. We are calling her dr again on Monday to call in a new prescription. I hope it helps again. She wasn't needing it for awhile. She was doing great without it. The annoyance of EB  -_-

Brystals sleeping is getting so much better! We upped her doxepin to 3.5ml and she is doing great with it. When she wakes up in the morning she just lays in bed talking to herself. Definitely one of the best things to hear first thing in the morning! "mamamama! daaaa-DA!" I just love her voice.

We are having a hard time with her ear right now. Idk if she has something internally going on or if she got a blister on it and its just bothering her. She has rubbed it raw. The picture I am posting isn't the nicest ones but just know that it looks worse then it really is. She doesn't cry or anything when she is rubbing it. We drove in the car for 10-15 mins and when I got her out she had blood all over her hand, face, kneck, ear and outfit. Didn't cry once while in the car. I am pretty sure that I freak out more then she does lol. I don't do blood AT ALL lol

Brystal is sitting on the floor trying to crawl just talking away! Very VERY happy baby! I couldn't have asked for a better baby. She is a very special gift I will cherish for the rest of my life. Knowing we have such an amazing group of family and friends to support us makes us one happy family! Thank you to everyone once again. And know that I do read every comment and I sincerly appreciate everything all of you do :)

Her little ear :(

:) Bandage time!

This is her better leg. This is the worst is has looked in a long time.

This is her bad leg and it looks SO good right now!

Holding her bottle! She holds it all the time now!

I hope every one is having a great weekend. Will update soon!

Brayce :)

Sunday, August 19, 2012

Update for July -Now

I am so sorry I haven't posted an update since June. These last few weeks have been so crazy for us! I haven't found a job yet. It's so hard with the hours that I need. Sophie started preschool last week so that has been keeping us pretty busy! lol But let me tell you a little about what Brystal has been up too!

She is almost crawling!!!! I am so proud of her. She is so so close. She got herself up on all fours for 10 seconds and as soon as I got my phone out to take a picture she laid right back down. She is starting the rocking motion. and she scoots herself backwards. I give it a week or two! She is also trying to walk. She pushes herself around a little bit in the walker. She also will hold your fingers and walk around. Surprisingly she hasn't blistered on the bottom of her feet. She makes all of us so proud!

I tried so hard to get the picture of her on all fours lol

Almost there!!! Soo close!

Leg warmers!

She is growing up so fast! She had her 9 month check up on Tuesday and she now weighs 18lbs 4oz! Definitely thriving! lol. She also had her hearing test done on Wednesday since she wasn;t able to have it done when she was really little since it involved adheasive being stuck to her skin. She passed :) She did so well getting the test. I wish I would have been able to get pictures since she looked so cute with ear plugs in.

An update with her sleeping and itching! So they put her on Doxepin which is normally prescibed for anti depressants but also helps with itching! Well, they started her off on 1/2ml and has been uped 1/2 a ml every so often until we can get her to stop crying for hours at night because she is itching so bad. Well right now we are at 3ml. They said that if we up it too much we will have to have a EKG to monitor her heart. I am hoping that we don't have to up it anymore. She seems to be doing better with it at 3ml's but I hate having her on it because it knocks her out. She will be playing and all happy and once it hits her, it is like she has a bobble head. She tries fighting it but never wins. I am happy she is able to sleep at night though. I know Brendan likes it since he wakes up so early and her waking up at 1am and being up for several hours wasn't his idea of a good time lol.

As for her bandage changes! She was doing sooo good for awhile. Wasn't crying or anything like that. Well Idk what happened, but her leg bleeds every time and she does her horrible pain cry. I have to lean over our tub and almost hug her while we bathe her so she won't freak out! She used to love being in the water playing with her toys, but not now :/ I wish I knew what was going on. If only she could tell me. Just a matter of time I guess. But when we get her out of the tub and do her bandages she is so happy. One of the girls preoccupies her or she looks out the window. It probably takes me 10 mins to wrap her legs and get her dressed! It's a lot less exhausting then when we first brought her home. It would take us a hour and half to get it done. That wasn't counting the prep of gettting her bandages ready and bath. All in all it takes me about 20-25 mins from start to finish. To someone that doesn't have a kid with EB that probably seems like a long time to be giving your kid a bath but to us parents with EB children this time is crazy fast haha.

Her left leg just does not want to heal!

This was her side from being picked up and the humidity!

Brystal is starting to say words now as well. Only a few of us have heard her say Hi. I swear she says it! lol. She also says Mama, Dada and Baba (bottle). She loves to wave! It is so cute. She gets the biggest smile on her face and just waves her whole arm. She also started giving kisses! It is rare but happens. Only when she is in a good mood though! Not everyone has witnessed this yet. I get the most kisses when we are at the gym and she is in kids club and I pick her up. Omg she gets the biggest smile when she sees me. It definitely is one of the greatest feelings ever!

Okay I don't want to bore you by writing too much! So one last thing! We filmed an interview with the news station in Tucson this morning and it is airing tonight at 10pm! I will definitely post a link up here for all of you amazing people to see! I can't wait to spread even more awareness! Brystal did amazing. Just smiling and playing! Waving at everyone. Happiest baby! lol

I hope everyone is having a great weekend. I will post again soon!

Brayce :)

Loves to smell all her food.

Happy baby at the Dr

Play time :)