Losing This Battle with MS - An Update on Sarah

Sarah has been hospitalized again. We are losing this battle with stabilizing Sarah's vision, but we will not lose the war on this disease.I KNOW that although MS has gotten Sarah down for the count yet again, it will not beat us in the end.

 She will be at Akron Children's Hospital until late Saturday night or early Sunday morning undergoing both a steroid treatment (3 days) and an IVIG treatment (5 days). Her spirits are pretty good, and she (as always) has been a wonderful patient. The nursing staff is in love with her. (Who wouldn't be?)

We noticed a difference in her vision in the last couple of weeks. Little things like not being able to tell the color of a shirt and her rubbing her eyes more often than normal. She had a regularly scheduled visit with Dr. Locastro (an AMAZING doctor), her ophthalmologist, last Wednesday, so we waited until then to talk to him about our concerns rather than make an emergency appointment when we first started noticing problematic symptoms. He ran the usual gamut of tests and found that her vision had deteriorated in her right eye.(It was testing in at 20/60 - which is normally when she is hospitalized) Her vision in her left eye was 20/30 - which is the best it has been since her diagnosis. Dr. Locastro advised us to follow up with him in two weeks rather than admit her to see if the Optic Neuritis would calm itself down on its own. We were grateful that he did not admit her, but rather let her come home. She had a pretty normal Thursday, Friday, and Saturday of last week. There were some signs here and there that all was not well with her vision, but nothing extremely severe. Sarah was able to trick or treat with her siblings on Saturday. Sunday is when it hit her again. She woke up with black spots in her eyes and very blurry vision. By Monday night she could no longer see more than a foot in front of her, and her handwriting on paperwork for school was pretty bad. Dr. Locastro squeezed us in for an appointment at noon yesterday, and her vision in both eyes was drastically worse. I do not know what her right eye ended up testing at. I know that her left eye was coming in at 20/100, and that was the better of the two eyes. She was immediately admitted to Akron Children's.

She will be having an MRI tomorrow to determine if this downward spiral of events is another exacerbation or if this is just a continuation of the Optic Neuritis from her first episode last May. Dr. Locastro seems to think it is a continuation from her first episode because her vision has never been fully restored since May 18th. Dr.'s are puzzled as to why her Optic Neuritis keeps switching eyes. It normally takes hold of one eye, not both, and then get better over time. It does not switch eyes and then get better and worse and better and worse. Those overseeing Sarah's case seem puzzled by this series of events.  I am hoping this is just a continuation of her first relapse because a person's first two after diagnosis are critical in determining how severe her MS will be over the course of her lifetime. The more episodes (or relapses or exacerbations - take your pick) a person has the more likely he will have a tougher time with the disease. The less frequently he relapses the kinder the disease seems to be to him over the course of his life. It would not be very good if Sarah is having exacerbation after exacerbation - especially since she is so young.

Her MRI is going to be done while she is awake, and it is a full scan. She will be undergoing a 2-3 hour MRI without being sedated. I asked her if she would like to be put under since she has had an MRI done both ways, and she chose to be awake. She is truly a trooper.

Every night for the next several nights she will be hooked up to intravenous drugs for about 3 hours while both the steroids and the IVIG slowly make their way into her body. She is so brave. I honestly think she is one of the bravest kids out there - bar none.

When she is released from the hospital she will be on an extremely long taper from the steroids. Doctors are hoping that this will kick the Optic Neuritis out of her body for good.

Her biggest fear is that she will lose her vision completely. She has told me on more than one occasion that she is afraid her world will go black forever. The pain those thoughts cause my heart are truly indescribable.

The kids came up to see Sarah for several hours today. The day was beautiful, and we spent about 3 hours outside in an amazing grassy area outside of the hospital. She was missing the kids terribly, and couldn't wait to see them today. I am so glad that I homeschool them, so that they all have the opportunity to be together in situations like this. There honestly won't be much traditional school work done this week - we will have to make it up during the school year - but the kids will all be together as much as possible. What better lesson is there than knowing that you can count on your siblings through thick and thin? For this week school may not be traditional, but lessons are still being learned.

 I am so glad that we have been spending as much time as we have been outside with each other as a family. I was wondering if we were doing the right thing spending our days so untraditionally, and now I know that those moments - those days - were spent exactly as they should have been. The moment I knew that she was going to be admitted I was so happy that we have been spending time out side laughing and playing, and being a family. Making memories as a family that is what this life is all about. There is nothing like illness to point your heart to true north, and to what really matters in this world.

As always I will keep you all updated. For those of you who have children - hug them for me - and if you have healthy children - give thanks for that because you are luckier than you may realize.