Some Updates on Sarah

I know that there are a lot of you out there who have shared our concern regarding Sarah's illness and I wanted to take some time to let all of you know how she is doing.

First and foremost, since moving down to New Mexico, Sarah has not been hospitalized one time. That in and of itself is a miracle as she was hospitalized around 11 times in the 17 months from the time she was diagnosed until we left Ohio in October of 2014.

Besides dealing with extreme exhaustion which is a common side effect of an autoimmune disease such as hers and her loss of vision she has no other symptoms of this incredibly horrible disease. That, too, is a miracle.

We have opted to just stick with her current doctor at the Cleveland Clinic for treatment as the medical community down here is not adequate to deal with the complexity of a disease such as Sarah's given its rareness in the adult population and even more rareness in the pediatric population. This decision was also made because her condition seems to have stabilized to the point that monthly medical intervention is no longer necessary. Had it been, I suppose we would have sought out treatment in El Paso, TX instead of here.

While still maintaining her prescribed medication Bob and I have decided to treat Sarah homeopathically as well. She began taking her remedy at the end of last week and we are hoping that the over the course of time both her energy will improve, and there is a chance (we are not sure how big of one) that she may be able to recover part of her vision. I don't know how much I buy into this type of treatment yet, but I figured that it current hurt to try. Sarah was on board with trying this type of treatment as the black dots that cloud her vision have been increasing as of late making it more difficult for her to get around in some instances.

We will be going back to Ohio the first two weeks of December and while there she will have a brain and spinal MRI which will last about 2 hours. (The Cleveland Clinic informed us that this procedure will cost $12000 and that we need to make sure our insurance company will cover it. How in the world can a two hour procedure cost $12000?!)  We will then have a follow up appointment with her doctor that works at the Mellen Center a few days after that to have the MRI read. If Sarah has no new lesions and if her lesions have healed themselves then Sarah will be taken off of her medication as it would appear that that risks of taking it would outweigh the benefits since her body would appear to be healing itself. I am going to assume that this is going to be the outcome because I don't know what I will do if there are more lesions presenting themselves on her brain or spinal cord.

As for the rest of her Sarah has mostly good days and a few bad days sprinkled in here and there. She seems to have found a deep love of music and Bob has taken her to 3 concerts in the last 5 weeks. I think that music helps her to feel "normal".  She loves audio books and is constantly listening to them. I have purchased several audio books for her and she also uses a website that provides free classic books in an audio version. She is currently obsessed with the Little House on the Prairie series and has listened to those 7 books over and over again despite having other options available. I read to her a lot as well. We are currently reading the Anne of Green Gables series.

The one area that I see her struggling in is the area of friendships. There are so many kids who she comes in contact with on a regular basis, but she has only opened herself up to a couple of them. When we are out and about at a park day or some other type of outing she will just sit by my side and not be very willing to go and meet new kids. It isn't that they aren't friendly or kind it just seems that she has developed an aversion for putting herself out there. My once outgoing girl has become very shy and withdrawn in new situations. It is a concern for me, and is one that I am working on, so hopefully with time she will learn to come out of her shell again. I will say that the girls that she has opened up to have been a tremendous blessing. They are wonderful with her and are a bright spot in her life. I am very thankful for them as they make Sarah feel like just another girl.

Sarah is involved in horseback riding lessons which she does about twice a month. It is breathtaking to see her up on the horse. I love watching her put the saddle on before riding and then taking the saddle off and brushing Bow down after her lesson. It is really cool to watch her use her hands to see. It is really actually quite amazing.

It is also amazing to watch her at gymnastics. She brings her cane into the gym with her now - which is something she was too shy to do at first - but after a couple of mishaps of being left alone without any guidance as to where the class was going to she decided it was best if she brought her cane in with her so that she could try and find them in the event that her class left her again. I love watching her on all of the different apparatus. I also love that the gym requires Sarah to have the same level of mastery on each apparatus in order for her to be able to move up to the next level. I know that it is so much harder for Sarah to master these skills, but I think she will be so proud of herself once she is able to realize that she earned her way up just as any other girl did. I don't want her to live her life expecting special treatment - the gym feels that way too.

Braille is coming along and Sarah is excited to be able to read on her own one day too. If we are still here when she is able to read Braille fluently there is a school for the blind about an hour away that offers a library of books all in braille. Sarah found out that they have Baby-Sitter Club books there and she is itching to be able to read one on her own. I know that she misses reading very, very much.

As always, please keep Sarah in your thoughts and prayers. Please pray that her MRI shows positive healing instead of the spread of disease. Please pray that the clinical trials going on now to restore myelin are successful because if they are then there is a real hope that someday Sarah will be able to see again with her own eyes. What a true miracle that would be. It is something her Dad and I wish for so much.