I wanted to start this blog as a way to share information, give Virginia something to look back on, and to also help others who may have or being going through some of the same things we are. I should also probably start with some background about all of us. I am her Mom, Kimberlie, and I will be writing this blog for the most part. Her Dad, Clay, is just about the best dad and husband on the the planet. I know I am biased, but he is an amazing rock for our family, and I would be a mess without him. We have 3 daughters, Virginia is 11, Charlotte is 8, and Elizabeth is 5. We live in Franklin, WV. I am a substitute teacher, and Clay works for Pendleton Community Bank in Public Relations. Now, I will get back to how Virginia's journey began!
Around the middle of April, Virginia had been complaining that her left eye felt kind of funny, and that she just wasn't feeling great. I kept telling her it was probably just her allergies, and I used eye drops and gave her ibuprofen.
Then, at school on April 24th, she came up to me, and said, "Mom, I can't see out of my left eye!" I was teaching at school that day, and I immediately called her pediatrician's office, and they said to bring her in. They looked at her eye, they said her retina looked good, there was no infection, and suggested we take her to see an ophthalmologist so they could look even further. So, the next day, we had an appointment, and we headed to the ophthalmologist.
The ophthalmologist was able to look at her optic nerve, and he noted that it was severely inflamed, and suggested that we schedule an MRI. They said their office could get it scheduled for us, and they would give us a call with a date and time. Number one, I had no idea how long it can take to get scheduled for something that it is truly needed, and little did I know what our next step would be.
So, after waiting almost 2 more weeks, our pediatrician said that we should just take her to the Emergency Room at Ruby Memorial in Morgantown, WV. So, early in the morning on May 7th, yes we have now waited this long, we were walking into the ER having no idea what was to come. We were put into a room, and the parade of doctors began. They decided to admit us immediately, and we were told that we should be getting an MRI later that night.
After a few hours of being in her hospital room, she wanted to get out and play a bit, so we took her down to the activity center to play outside. After about 20 minutes or so, she wanted to go back to her room. On the way back to the room, she passed out right by the nurses station. This moved her to a more critical status, and about 2 hours later I was sitting in the MRI room with our sweet girl while she laid in a tube for an hour and a half. Her only request was that she wanted to listen to The Greatest Showman Soundtrack. They of course obliged, and she was a rockstar!
Her MRI showed the severe inflammation in her left optic nerve. She was started on IV steroids, and we were told that we would be in the hospital for about 4 - 5 days. Now, all of this time Virginia was so brave, and took it all in stride. We couldn't even count the number of doctors, nurses, therapists, etc. that came through her room. Her Dad and I felt like our heads were going to explode with information, questions, and just worry for our sweet girl. We all 3 made that hospital room our home as we waited to see if her eye would improve. The out pouring of love that she received in the hospital really kept her spirits up!
On May 8th, they also performed a lumbar puncture to rule out lots of other things, and to make sure they got a full picture of what was going on. They did put her to sleep for this, at our request. We wanted to be sure that experienced as little stress as possible, and she didn't need to remember or even know what a lumbar puncture feels like. So, I watched as they put our sweet baby to sleep, and then left for the 10 minute procedure. We she woke up, her first question, was did her Daddy get her sushi for lunch! Her results for the LP came back clear.
She also had a ton of blood work done at this time as well. They ruled out Lyme, all kinds of infections, and so many other blood levels. They did find that she tested positive for a MOG antibody, but they said it is a fairly new test, and they didn't know if that would present any issues going forward. She was diagnosed with Optic Neuritis (ON).
Virginia was thrilled that she got to spend some time with Tia, a therapy dog. Animals really do make things so much better!
So, on May 11th, she was discharged on a steroid taper, a list of follow-up appointments, and we were told that it could be a couple of weeks, or even a couple of months before her vision improved.
She did regain a little vision. She likes to describe it as, if you are driving down the interstate, and there is a car in front of you, she cannot see the car, but she can see some of the mountains, trees, and sky around it. I can't even begin to imagine it, and she just goes with it, and truly handles it better than any adult I know!
After being home for a few days, she started to complain that her legs were hurting, and she was having issues walking. Her knees would buckle under her for no apparent reason. She was not able to go back to school for the rest of her 5th grade year. As time went on, her knees would lock so she had to walk with a straight leg, and we just knew that something wasn't right. We were referred to a Pediatric Rheumatologist, Dr. Rosen, and Ruby Memorial. We met with him on June 1st for her leg pain. His opinion was that maybe she had Fibromyalgia, and suggested activity, and physical therapy. So, we came home, tried to keep moving on, we went to the pool for activity, and instead of getting better, her leg pain and symptoms were getting worse.
So, on June 11th we were admitted back to Ruby Memorial to now try to find out what else was going on with our sweet girl.
As, I am trying to play catch up with this blog, I will stop here, and will continue with the next post! Thank you for joining our sweet girl's journey, and for all of the prayers, love, and support that we feel every day!
Around the middle of April, Virginia had been complaining that her left eye felt kind of funny, and that she just wasn't feeling great. I kept telling her it was probably just her allergies, and I used eye drops and gave her ibuprofen.
Then, at school on April 24th, she came up to me, and said, "Mom, I can't see out of my left eye!" I was teaching at school that day, and I immediately called her pediatrician's office, and they said to bring her in. They looked at her eye, they said her retina looked good, there was no infection, and suggested we take her to see an ophthalmologist so they could look even further. So, the next day, we had an appointment, and we headed to the ophthalmologist.
The ophthalmologist was able to look at her optic nerve, and he noted that it was severely inflamed, and suggested that we schedule an MRI. They said their office could get it scheduled for us, and they would give us a call with a date and time. Number one, I had no idea how long it can take to get scheduled for something that it is truly needed, and little did I know what our next step would be.
So, after waiting almost 2 more weeks, our pediatrician said that we should just take her to the Emergency Room at Ruby Memorial in Morgantown, WV. So, early in the morning on May 7th, yes we have now waited this long, we were walking into the ER having no idea what was to come. We were put into a room, and the parade of doctors began. They decided to admit us immediately, and we were told that we should be getting an MRI later that night.
After a few hours of being in her hospital room, she wanted to get out and play a bit, so we took her down to the activity center to play outside. After about 20 minutes or so, she wanted to go back to her room. On the way back to the room, she passed out right by the nurses station. This moved her to a more critical status, and about 2 hours later I was sitting in the MRI room with our sweet girl while she laid in a tube for an hour and a half. Her only request was that she wanted to listen to The Greatest Showman Soundtrack. They of course obliged, and she was a rockstar!
Her MRI showed the severe inflammation in her left optic nerve. She was started on IV steroids, and we were told that we would be in the hospital for about 4 - 5 days. Now, all of this time Virginia was so brave, and took it all in stride. We couldn't even count the number of doctors, nurses, therapists, etc. that came through her room. Her Dad and I felt like our heads were going to explode with information, questions, and just worry for our sweet girl. We all 3 made that hospital room our home as we waited to see if her eye would improve. The out pouring of love that she received in the hospital really kept her spirits up!
On May 8th, they also performed a lumbar puncture to rule out lots of other things, and to make sure they got a full picture of what was going on. They did put her to sleep for this, at our request. We wanted to be sure that experienced as little stress as possible, and she didn't need to remember or even know what a lumbar puncture feels like. So, I watched as they put our sweet baby to sleep, and then left for the 10 minute procedure. We she woke up, her first question, was did her Daddy get her sushi for lunch! Her results for the LP came back clear.
She also had a ton of blood work done at this time as well. They ruled out Lyme, all kinds of infections, and so many other blood levels. They did find that she tested positive for a MOG antibody, but they said it is a fairly new test, and they didn't know if that would present any issues going forward. She was diagnosed with Optic Neuritis (ON).
Virginia was thrilled that she got to spend some time with Tia, a therapy dog. Animals really do make things so much better!
So, on May 11th, she was discharged on a steroid taper, a list of follow-up appointments, and we were told that it could be a couple of weeks, or even a couple of months before her vision improved.
She did regain a little vision. She likes to describe it as, if you are driving down the interstate, and there is a car in front of you, she cannot see the car, but she can see some of the mountains, trees, and sky around it. I can't even begin to imagine it, and she just goes with it, and truly handles it better than any adult I know!
After being home for a few days, she started to complain that her legs were hurting, and she was having issues walking. Her knees would buckle under her for no apparent reason. She was not able to go back to school for the rest of her 5th grade year. As time went on, her knees would lock so she had to walk with a straight leg, and we just knew that something wasn't right. We were referred to a Pediatric Rheumatologist, Dr. Rosen, and Ruby Memorial. We met with him on June 1st for her leg pain. His opinion was that maybe she had Fibromyalgia, and suggested activity, and physical therapy. So, we came home, tried to keep moving on, we went to the pool for activity, and instead of getting better, her leg pain and symptoms were getting worse.
So, on June 11th we were admitted back to Ruby Memorial to now try to find out what else was going on with our sweet girl.
As, I am trying to play catch up with this blog, I will stop here, and will continue with the next post! Thank you for joining our sweet girl's journey, and for all of the prayers, love, and support that we feel every day!
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