We are currently at WVU Children's Hospital for Virginia's fourth infusion of IVIG. I am sitting here looking out the window, watching it snow, and thinking about our Sweet Virginia. She is just the most amazing kid. If you know her, again, she will always tell you she is good or great. Even at home, she is a little more honest, but still puts on a brave face most days. We talk about her disease when she wants to, and I always tell her that it is okay to tell us exactly how she feels about it. She always tell us she knows that, and she loves us.
For the first time today, she said, "Mom, why is life so unfair?" I said, "What do you mean sweet pea?" She proceeded to tell me that she just wonders sometimes why this happened to her, why she has to be in the hospital when all of her friends have a day off from school, and why do kids get sick anyway? Well, my Momma heart just about broke. I swallowed my tears, and said, "You know what, you are the most amazing girl I know. I don't know why you were chosen to have this disease, but you are going to change the world sweet girl!"
I also think that she is a little stressed because, for her next visit, they are going to put in a port for her infusions. Her little veins are hard to find on a good day, but they are slowly burning out the good ones. We gave her all the information, and she chose to have it put in. She said she looks forward to not having to have an IV every time.
She also now tells me that she can't wait to get to 10,000 Instagram followers so that she can start making a real difference. I laughed when she told me that, but then I started to think about. This is the world we live in. The internet can be questionable at best sometimes, but it can be an amazing tool if put to good use. I actually had another mother contact me through Facebook. She told me that her daughter was just diagnosed with Optic Neuritis, and tested MOG+. She found Virginia's page and said that it really helped them with information that is hard to find, and it was nice to talk with another Mom that understood. This is the biggest reason why we share Virginia's journey. We want to help all the other kids out there that we can. So, if you can share Sweet Virginia's Journey, please do so. Our girl wants to change the world!!
Oh, and the pickles and puppy part..... We have said it before, but the staff here at WVU Children's is just amazing. Her doctor this time, Dr. Lancaster, was talking to Virginia about all kinds of things. He was also talking to her about the fact that her medicine pretty much takes away her appetite. She then proceeded to tell him that dill pickles still taste great, but the hospital didn't have any. Well, the next day, Dr. Lancaster showed up with 3 giant pickles from Jimmy John's!
Then, the first therapy dog we every met was Gus, the English Sheepdog. He sat in our laps and gave us love when we weren't even sure what was happening with our Sweet Virginia/ Well, I messaged Gus' owner through Instagram, again the power of Social Media, and Gus can by today to bring back that sweet smile that has been missing lately!!
For the first time today, she said, "Mom, why is life so unfair?" I said, "What do you mean sweet pea?" She proceeded to tell me that she just wonders sometimes why this happened to her, why she has to be in the hospital when all of her friends have a day off from school, and why do kids get sick anyway? Well, my Momma heart just about broke. I swallowed my tears, and said, "You know what, you are the most amazing girl I know. I don't know why you were chosen to have this disease, but you are going to change the world sweet girl!"
I also think that she is a little stressed because, for her next visit, they are going to put in a port for her infusions. Her little veins are hard to find on a good day, but they are slowly burning out the good ones. We gave her all the information, and she chose to have it put in. She said she looks forward to not having to have an IV every time.
She also now tells me that she can't wait to get to 10,000 Instagram followers so that she can start making a real difference. I laughed when she told me that, but then I started to think about. This is the world we live in. The internet can be questionable at best sometimes, but it can be an amazing tool if put to good use. I actually had another mother contact me through Facebook. She told me that her daughter was just diagnosed with Optic Neuritis, and tested MOG+. She found Virginia's page and said that it really helped them with information that is hard to find, and it was nice to talk with another Mom that understood. This is the biggest reason why we share Virginia's journey. We want to help all the other kids out there that we can. So, if you can share Sweet Virginia's Journey, please do so. Our girl wants to change the world!!
Oh, and the pickles and puppy part..... We have said it before, but the staff here at WVU Children's is just amazing. Her doctor this time, Dr. Lancaster, was talking to Virginia about all kinds of things. He was also talking to her about the fact that her medicine pretty much takes away her appetite. She then proceeded to tell him that dill pickles still taste great, but the hospital didn't have any. Well, the next day, Dr. Lancaster showed up with 3 giant pickles from Jimmy John's!
Then, the first therapy dog we every met was Gus, the English Sheepdog. He sat in our laps and gave us love when we weren't even sure what was happening with our Sweet Virginia/ Well, I messaged Gus' owner through Instagram, again the power of Social Media, and Gus can by today to bring back that sweet smile that has been missing lately!!
So, again we know that there are big things out there for our Sweet Virginia. Thank you for being a part of her journey, and please remember to spread kindness any chance you get!!!
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