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 :)


  1. maybe ask about zinc supplements...they help in healing...

  2. Give Brystal a NEVER GIVE UP hug from me! I had a near death experience when I was a child, also...but not as young as her. I hope things get better for her.

    PS...I live in Oro Valley, so we live fairly close!

  3. I was looking at some of your earlier posts. I see you guys are huge Coyote fanatics. So am I! In fact, back in 2009-2010, I had a partial season ticket. My seat was in section 204 or 207(I was in a corner of the building kind of) and it was the very front row of the upper deck. I could look down on the box seats right in front of me. Getting rid of Gretzky as coach was the greatest thing in team history!

  4. just saw this blog. Reminded me of another wee girl. Please read the following link. Not sure if it will help or not.



  6. I had to write you as I am a medical device rep for wound care and I saw the article. I am local as I live in Phoenix and we have dressings that are recommended for EB children and help alot with dressing changes.
    If you would like to contact me please email me att


    Allison :)

  7. Best wishes

    The uploader
    The entry
    The recording

  8. Hi there,

    Just saw the Huffington Post article about your daughter. I volunteered for an organization for Children's Cardiomyopathy Foundation several years ago. It's a different illness from what your daughter has, but equally rare - thus not a lot of research or support. Thought I'd recommend it as a resource. The founder, Lisa Yue, was a parent of children with disease, and started the foundation on her own. They've come a long way in a few years. Here's the website.


  9. Ps - it's meant as a resource as an organization that has built awareness around a rare children's disease.

  10. Hi,

    I am not sure what to say, but I believe Govt. of USA should help such kids also all the medical/science fraternity should immediately look into solving this problem. It's too painful to see this, but her smile and twinkling eyes make me believe humans can overcome this problem. :)!

    I hope you guys look for custom made dresses for her, that are innovative enough to fit into her and also protect her skin from any damage. I hope it has some specific nature and it is not affected all over the body as I wonder how guys feed her without hurting her lips. So I hope she has only some parts vulnerable to it and overtime, she would outgrow.

    May be you should monitor the whole time to see what activities make her leg that was not developed when she born to get blisters and I hope curing that cures her whole body.

    I pray to God that he gives her strength and support and does miracles and help prosper :)!

    Wish you a great luck :)!

    Keep going and God Bless!