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 :)