I have not posted on our Sweet Virginia's website in a while. To be honest, most days, I don't even know what to say or where to begin. Today, four days until Christmas, we are at Ruby Memorial Hospital in Morgantown, WV where our Virginia is receiving her 3rd monthly infusion of IVIg. I am sitting beside her bed writing this post, and she is sound asleep because of the medicine they have to give her after her infusion.
The last time I posted, Virginia was on Cellcept, which is a drug that we hoped would suppress her immune system, and get her body to stop attacking its own nerves. However, that medicine failed, and Virginia lost her ability to walk for over a month. So, what do we do next?
Well, we talked to her fabulous doctor, Dr. Levy, and he said our best bet was to give IVIg a try. I had mentioned this treatment in a previous post, but at the time there was a shortage of IVIg ( intravenous immunoglobulin), and we just weren't ready to go the infusion route. IVIg is made from the blood plasma of multiple donors. IVIg is all of the antibodies from the plasma all placed into an intravenous solution. The hope is that it will give her body a boost to fight off any future relapses. With anything regarding a rare disease, there is a big part of cross your fingers and hope, but we are feeling pretty good about it.
For her first infusion, we were admitted for 5 days so that they could infuse the IVIg slowly and watch for any reactions. She did okay, but the side effects were a little rough. Now, we are getting her infusions done over 3 days, and they are using different IV medications after to help limit the side effects. She gets toradol, reglan, and benadryl immediately following infusion. This helps significantly with the migraine and nausea. She also leaves the hospital with the same "cocktail" and zofran to help with the nausea. She does lose her appetite and we struggle to find things that she likes to eat.
All that being said, after her first infusion, she was walking again about a week later. So, we would say that this treatment is working well, for now. We will continue these monthly infusions for now, as long as they are working. The one thing we are learning is that MOG is a rare, incurable, disease. We are also learning that we have to take it day by day, and a lot of this is learning as we go. We are so happy to have our girl walking again. We are thankful every day, but that certainly doesn't mean that we don't have hard days.
The hardest part is what other people who are not with her every day just can't understand, and that is okay! We are surrounded by the best family, community, friends, and medical experts, and Virginia is just the most amazing girl ever! If you ask her how she is, she will almost always say, "great" or "good." However, as her Mom, I just can't explain the feeling when I wake her up for school every morning, and instead of her first words being, "I love you Mommy," they are usually, "Mommy, I don't feel good." It is also hard to see the bags under her eyes that seem to be there all the time now. It breaks my heart and if I am being honest it is quite the emotional burden to bear. We are so lucky in so many ways, and we do our absolute best to live in positive land, but I would be remiss to not share the other side of this journey too!
As I sit her looking out our hospital window, I also need to mention our two other sweet girls, Charlotte and Elizabeth. We know this affects them too, and we do the best we can to make this as easy on them as possible. It was super hard to leave them this close to Christmas. I can't help but think that this should be the time we are making cookies for Santa, decorating gingerbread houses, and enjoying being together as a family. I can tell they don't want us to leave, but like their big sister, they are two brave little girls! It does make me feel good to know that Clay and I must be doing something right as parents. I mean, not to toot our own horn, or say that we don't mess up more than we get right, but I have to say that our little family is my whole world!
I will make the commitment to write more on this blog. I also find that writing is therapeutic for me. We will also have a big announcement on Monday. Our wonderful community got behind Virginia's desire to provide pajamas to all the kids at WVU Children's Hospital. We can't wait to show all of you the results! We also post a lot more on Sweet Virginia's Journey Facebook page. However, for now, I will wait for Virginia to wake up. She has requested that we walk around later and see how many Christmas trees we can count in the hospital! Thank you all so much for all of your love and support!
As we always wish, be kind, love hard, and keep fighting always!
The last time I posted, Virginia was on Cellcept, which is a drug that we hoped would suppress her immune system, and get her body to stop attacking its own nerves. However, that medicine failed, and Virginia lost her ability to walk for over a month. So, what do we do next?
Well, we talked to her fabulous doctor, Dr. Levy, and he said our best bet was to give IVIg a try. I had mentioned this treatment in a previous post, but at the time there was a shortage of IVIg ( intravenous immunoglobulin), and we just weren't ready to go the infusion route. IVIg is made from the blood plasma of multiple donors. IVIg is all of the antibodies from the plasma all placed into an intravenous solution. The hope is that it will give her body a boost to fight off any future relapses. With anything regarding a rare disease, there is a big part of cross your fingers and hope, but we are feeling pretty good about it.
For her first infusion, we were admitted for 5 days so that they could infuse the IVIg slowly and watch for any reactions. She did okay, but the side effects were a little rough. Now, we are getting her infusions done over 3 days, and they are using different IV medications after to help limit the side effects. She gets toradol, reglan, and benadryl immediately following infusion. This helps significantly with the migraine and nausea. She also leaves the hospital with the same "cocktail" and zofran to help with the nausea. She does lose her appetite and we struggle to find things that she likes to eat.
All that being said, after her first infusion, she was walking again about a week later. So, we would say that this treatment is working well, for now. We will continue these monthly infusions for now, as long as they are working. The one thing we are learning is that MOG is a rare, incurable, disease. We are also learning that we have to take it day by day, and a lot of this is learning as we go. We are so happy to have our girl walking again. We are thankful every day, but that certainly doesn't mean that we don't have hard days.
The hardest part is what other people who are not with her every day just can't understand, and that is okay! We are surrounded by the best family, community, friends, and medical experts, and Virginia is just the most amazing girl ever! If you ask her how she is, she will almost always say, "great" or "good." However, as her Mom, I just can't explain the feeling when I wake her up for school every morning, and instead of her first words being, "I love you Mommy," they are usually, "Mommy, I don't feel good." It is also hard to see the bags under her eyes that seem to be there all the time now. It breaks my heart and if I am being honest it is quite the emotional burden to bear. We are so lucky in so many ways, and we do our absolute best to live in positive land, but I would be remiss to not share the other side of this journey too!
As I sit her looking out our hospital window, I also need to mention our two other sweet girls, Charlotte and Elizabeth. We know this affects them too, and we do the best we can to make this as easy on them as possible. It was super hard to leave them this close to Christmas. I can't help but think that this should be the time we are making cookies for Santa, decorating gingerbread houses, and enjoying being together as a family. I can tell they don't want us to leave, but like their big sister, they are two brave little girls! It does make me feel good to know that Clay and I must be doing something right as parents. I mean, not to toot our own horn, or say that we don't mess up more than we get right, but I have to say that our little family is my whole world!
I will make the commitment to write more on this blog. I also find that writing is therapeutic for me. We will also have a big announcement on Monday. Our wonderful community got behind Virginia's desire to provide pajamas to all the kids at WVU Children's Hospital. We can't wait to show all of you the results! We also post a lot more on Sweet Virginia's Journey Facebook page. However, for now, I will wait for Virginia to wake up. She has requested that we walk around later and see how many Christmas trees we can count in the hospital! Thank you all so much for all of your love and support!
Merry Christmas!
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