Friday, December 14, 2012

At a loss...

So by now everyone has heard about the shooting in CT. It really affected me today. Having Sophie in school for the first time this year made me scared. I don't know what I would do without my girls. While I was driving this afternoon the radio station here in Phoenix was doing a tel-a-thon for St Jude's Children's Hospital and they were trying to raise money. They had parents telling stories of their loved ones that had lost their fight against cancer. The clips were making me bawl like a baby! I couldn't stop crying while driving down the road. I called and made a small donation, but I wish I could have done more for them. I am a stay at home mom. I don't work a 40 hour week job with a commute. I am here ALL day (besides doctor appointments)! I should be doing something to help others.

It got me thinking and I can't donate my time and volunteer any where because I wouldn't have anyone to watch Brystal. I am going to look into do things at home to help others. I don't think it is right for a parent to attend their child's funeral. I am thinking about trying to find away to use my free time to help others while at home. I know there has to be SOMETHING I can do. I feel like just sitting here isn't enough. Maybe my girls will grow up seeing what I have done and want to do things to help others as well :)

A little update on Brystal. She went to the speech therapist and we are still trying to find a cup that works for her. So far we have tried 5-8 different cups and have not found the one that works for her. She isn't eating enough food and only drinking her formula so it is harder to transition her. I wish she would eat more because WIC has lowered our formula per month and Brystal is going through A LOT more then what they give us and her formula is $41 a can. It is ridiculous. We are going to try soy or almond milk soon. I am praying that she doesn't have some adverse reaction to it.

Brystal also had an upper GI done last week. This was not fun whats so ever. The doctor was very rude and left a bruise on her leg. He is so lucky that he did not tear off her skin. I did report him to his management. I also had something put in her notes that he cannot work on her. He even knew about EB and treated her so bad and gave me a ton of attitude. It was difficult. I even said, "Let's remember she has EB and we HAVE to be gentle with her." The nurse was so nice and understanding and listened to me which was GREAT but not the doctor. I just can't stand doctors that think they know more because they went to school when in all actuality they don't. They don't take care of that child day in and out. They aren't there for bandage changes and what not. It is so frustrating.

I don't know if I mentioned before how Brystal had to have her leg cut open so the infection under her skin could drain? Well that happened last month and now she has another spot on the other leg. The doctor wants us to wait to see how it goes on its own and do warm compresses twice a day for 10 minutes. It is so very hard to get her not to move and to keep it on her leg for so long. I am hoping it goes away on its own this time. Last time was very traumatizing!!!

On the upside Brystal is doing very well. I am very thankful for having such a happy baby. There are moments when I thank god that she isn't worse. Things could be a lot different for us and they aren't. I have to remain positive. Brystal definitely has changed me and made me a better person. I love to take a step back and see what I am blessed with. I have the best girls anyone can ask for. They are growing up so fast and I don't want to miss a single second. Take a minute to see what you have and not worry about what you don't have or the what ifs. Once you do that you can accomplish anything! Good night! <3

Love her and how happy she is after a bandage change <3

Most recent picture of her leg. You can see a blister on the top of her foot as well as her toe nails.. the few she has and the deformation that EB causes.

We designed stockings with one of my greatest friends and her daughter. Definitely a great day for us.

Her smile makes this journey worth every second. Just love how her teeth are coming in so WHITE and STRAIGHT!

Just took this picture before bed. She loves to point and LOVES to take pictures when she can see herself on the camera :)

Tuesday, December 4, 2012

Brystal's 1st Birthday!

I am so sorry this is so late! We just have been soo busy and caught up in everything! We had a great Thanksgiving! If you don't follow Brystal's facebook page you have no idea what I mean by busy! Lol Well we have been going through a lot these last few weeks. Brystal turned one (yay!), Thanksgiving, broken washer, Insurance problems again, Social Security thinks we make too much (only Brendan working), and Brystals health. It has been pretty stressful and hectic here. There have been a few good things going on though :) Brystal is ALMOST walking. She is super close. Her pt thinks she will be walking soon! So keep your fingers crossed. We are in the process of getting her off the bottle! Not my favorite thing about turning one but we will do it! Let me tell you about Brystal's birthday!

Brystal was sooo good. She had a blast. As did I!! All of our close family and friends were there! I wanted to say Thank You to my bestest friend. You know who you are ;) She is definitely my rock and surprised me by comig to her party. She started her new job and didn't think she would be able to show up! Anyways! Brystal got a ton of giraffes for her birthday lol. I'll Have to take a picture of all her giraffes and what not. She is too funny. And she got a lot of toys and CLOTHES! Yay! She was in such a great mood! I was beyond thrilled with how well she was. She didn't have the greatest nap but she did awesome. She even ate her birthday cake! She demolished it! Omg I have a million pictures of her eating her cake. It was the cutest thing. Of course we went with a butterfly and faire theme. It was so perfect. I doubt Brystal noticed it lol. But everyone else did so ya ha.

Okay so I wanted to post more about her birthday but I feel like there are a lot more things going on at the moment that I can't "remember" all the details. Brystal is very fussy and cranky. She has 5 teeth (3molars) coming all at once. She was constipated for a week, but now has diarrhea. She had OT today and we tried out two differet cups for her use. She isn't a fan of either. One of them cut her lip so I doubt I'll be able to get her to drink out of it and the other one doesn't have a valve to adjust her drinking intake and it really worries me. I don't want her to choke on it. She also has a swallow study next week as well as a PT apt and another OT apt. She is going to be one busy girl. It is a good thing I got all my Christmas shopping done and out of the way :)

We are having a lot of trouble with getting Brystal supplies. We just don't have the money to pay for them since Brendan is the only one working and we don't qualify for SSI till January. It is so stressful. We have been calling supply companies to see if they take our insurance but NONE of them take both our insurances, and the ones that take her secondary which is Medicade won't just run it because it is a secondary and NO ONE does that. It is so crazy and beyond stressful. I just don't know what to do at this point. We are waiting for a call back from her nurse this afternoon. I spoke with one supply company she told me it was $35 a day for one of the supplies we are using on Brystal. And we are responsible for paying 20%. She told me our cost would be around $500 a month! We can't afford half that! It is crazy. I hope we find a company soon.

Last weekend there was a walk in Sahuarita, AZ and they raised money for the dance studio and a few families brought toys for the girls for Christmas. A few even brought some clothes. It was so nice of them! We are in works to do a walk just for Brystal. I am hoping we can do it in March or maybe even April before the weather gets too warm. I will keep everyone updated on that though!

I am hoping that I can update better now. I know I probably say this a lot but I am going to try hard. I feel like a lot is going on and I get lost in it all. The girls ad I are doing projects all week until Christmas. We are starting our own traditions this year and I couldn't more excited. I hope that everyone had a fantastic Thanksgiving and that they continue to have a great time the rest of this year :)

Birthday Outfit <3

Present time. She wouldn't put down her giraffe.

Passed playing after everyone left her bday party :)



Birthday card from her Derm team <3

Great Grandma!

Helping me wrap Christmas presents for sissy's.

Helping me bake cookies for Thanksgiving.

Birthday Present from a family friend arrived in the mail!

Sisters at the park!

Lol LOVE this picture. She looked at me with this smirk after trying for 10 mins to get a picture of her lol

Random snow pile at the park. The girls were beyond excited lol


Swinging with sissy's at the park!

Two of her teeth. Bad picture but only one I could get lol