Sorry I haven't wrote in a while, I took a day off from the world to watch Sister Wives on Netflix. Being newly moved in an area I don't know many people, being caretaker as Greg is trying to hold together the new business, it's a loney place sometimes. I could use me a sister wife.
Tuesday was quite the day, even now after days, my mind is still processing. I feel quite accutely that I am missing a huge piece of the puzzle... can't quite put my finger on it. I hate that feeling.
We went to our appointment put in place by Children's Hospital at Jewish Health. Here I met with a Dr. Spahn and his fellow, who explained that they believe that Solstice has type 3, which is the most rare form of the disease.
That kid, always an over acheiver..
I really liked Dr. Spahn, or perhaps I loved that he knew something. He seems to be a natural teacher, able to break thing down and explain them easily.. and he had a plan. Thats all I've wanted for a while, someone to take the wheel. I feel like because this is so rare, and the research is so limited, I am the one driving. I don't feel comfortable driving a vehicle of this size, especially when my kiddo is strapped screaming and crying to the back hatch.
Luckily, from what I researched and from what they said, Jewish National Health here in Denver, is on the forefront of genetic testing for the diagnosis of this disease. This means that all those messed up blood tests are a thing of the past, and they actually can pinpoint the genetic material in the blood that causes the disorder. This has never been possible before. I can't imagine what is was like ten years ago to get this diagnosis. It's only in the last 5 years that there has been good treatment options. Generations before suffered, with no real relief. So, though the diagnosis is sad, I at least feel lucky I can help my child.
Since she is probably Type 3, he showed me a study conducted in Germany that showed eight patients that took progesterone (a female hormone) and had no attacks during that time. I didn't receive a real answer regarding side effects of progesterone, or if the other drugs created to ward off attacks work on type 3. (I now now there are quite a few treatment options YES!) But at least he was honest and said he didn't know the answer to my questions. I like that in a doctor. I'd like it better if he said "Ill find out", but .. hey I'm learning to not have as many expectations.
I've always been a get it done kind of person, and I am aware that I am no different than every other parent trapped in this system... but I also won't take no when it comes to my kiddo. My job is to make certain she gets the best care possible, and if I am disappointed I will speak out. But I also know to limit my expectations, and this is my new lifestyle and it can't be tied up with a bow just because I say so. As hard as it is... it's just not the way life works. You don't have to be a realist to know that.
Children's hospital has shown me over the course of the last days that I should not judge that one doctor for the care they provide. They have stocked the magic medicine at the Denver North location, so starting Tuesday we can go there if needed, just 15 minutes away. For now we know where two doses are nearby. Greg and I feared Solstice was starting an attack last night, and spent over an hour on the phone trying to find Berinert at the local ER's. After call number seven we found it. It's scary to think that the thing that will save my child is so hard to come by.
The insurance company, Aetna, so far as I know has continued to deny the claim to get the magic medicine, but Dr. Andrews is keeping on it, I love you lady! Regardless, she scheduled an appointment for Accredo to come to her office on the 10th of this month in order to teach us how I to infuse Solstice in the case of an attack, it will be so nice not to have to visit the hospital.
If they are denying the medicine that she needs to survive an attack, I wonder what will happen when we try to get the medication to keep them at bay. It seems that what works for one person doesn't work for another. It's going to be a long road of trial and error to find something that decreases the attacks, so she can live with less pain, and attend school normally. Follow her dreams, be the amazing person she is meant to be. She's always been so powerful, someone you're lucky to know, I guess that was the natural way of life preparing her for what was on her plate. I'm so proud of her. Even now, her positive attitude is radiant.
I wake up everyday thinking it must all be in my head. We're known for our drama afterall, maybe we just made it all up. Maybe she'll never have another attack. Maybe.. it will all just go away. This is where uncertaintly turns to hope... and hope is good stuff.
Please take a moment to watch the video our dear friend Chelsea Kappenman made for Solstice, and share it too!
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