Halloween being my favorite holiday, Solstice is used to celebrating in style, so there is a sadness with having to be in this place on a day that I celebrate with more pow than any other.
However, three very exciting things happened today! (Well, two so far, one is on it's way.) We got out of bed for the first time since our arrival seven days ago, and we broke the law and got all sneaky with bringing Solstice's puppy into Denver, being a pitbull, Samoah is an illegal. Risky, but worth the smile for sure.
My mommy called her mommy, and her punishment was that she was forced to spend everyday after school with me for an entire month. We ended up friends for life, but I honestly had no idea until just a few years ago when she told me. Forced to be my friend in 7th grade, and now all these years later she is still on my favorites list.
Neither Solstice or I can wait for their arrival, as they are so fun and crack bad jokes constantly. They treat her like a person, instead of a kid. You know those people that give just as much respect and attention to a child as they do adults. They are a rare breed, and with having a sick child that rarely receives visitors, as we are still new to the area, and she only had a couple of friends, I am starting to realize what a powerful and precious gift this quality is.
Solstice hasn't been to school in over two months. She hasn't gone more than three days without at least an emergency room visit. Our lives have changed drastically, and there is not much time to feel sorry for ourselves.
Greg and I wake up every day and spend all day on the phone, on the computer trying to find someone to help her. One of the doctors have even admitted they are just keeping her alive here, that they can't help her. It's a hard realization, especially when insurance is pushing to get us out and she is so weak she cannot yet walk. We may be released as early as tomorrow. Stupid insurance. Of course I want to go home, but she is so sick it's scary.
Greg figured out one major issue, that may save her life. The magic medicine, the stuff that is so important, that keeps her alive. She has every nasty side effect and since her disease acts up so often, and she was having so many doses, the side effects essentially kicked her ass. It's not the medicine you would normally give a kid with her type of disease, but since I don't have any specialist, things like this happen.
She didn't eat without throwing up for five days. They put a feeding tube in, but she puked it up a few hours later, they tried again the next day, but tried three times and gave up, after she started coughing up blood.
I was lucky enough to talk to a woman who is doing a documentary on HAE, and she said when her body gets that messed up, that the only things she can eat are cantaloupe, apples, and fresh coconut. It worked, and as soon as we switched her medication from Berinert to Firazyr, she started to perk up a bit. Going and doing crafts today for an hour wore her to bits, but she was able to do it... and hopefully we are out of the scary for now.
Thank you for reading, go cause some trouble for me, and have a great halloween.
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