Sarah is officially off of steroids, and I am holding my breath to make it past the 4 day mark. I don't want to overwhelm her by asking her every 15 minutes how her eyes are feeling, so I am biting my tongue. I have this lump sitting in my throat that has been growing for the last few days and now seems to really be weighing me down. There is nothing that I can do, and I know that, but the control freak in me still remains, and wants to know if this disease is going to take away her eyesight yet again. I know that some people would respond that this is not a good way to live, and I would like to say to those some people (with all due respect) that they have never had their 8 year old daughter lose her vision not once, but twice in a 3 week time period, and also be diagnosed with MS - so back off. I do know, that as time passes, I will not be so nervous. I am pretty confident that once we pass the 4 days off of the steroid mark with current vision in tact that I will indeed be able to shrug off the feeling of impending doom that has made itself a home inside of me.
We have an appointment with the Cleveland Clinic's Mellen Center on Monday morning at 8:40 am, and then we have an Ophthalmology appointment on Thursday morning. I am not expecting much from the Cleveland Clinic other than going over the same story I have been repeating over and over and over again....what were the symptoms? how long had they been going on? family history? how long was she hospitalized the first time? how many steroids did she receive in the hospital? what is her vision now? blah, blah, blah....I know that this information is important to discuss, but I feel that with today's technology a doctor should be able to write this information into a computer system once, and then all doctors should have access to this information regardless of their hospital. I am learning VERY quickly though that this is not how our medical system works.
The chore chart is going amazing! The kids have been doing an amazing job keeping up on their chores. Elizabeth is the only one who is fussing and mussing over her chores, but she will get used to it. I am loving it, and plan on continuing on with these charts for the foreseeable future.
We have not started "summer schooling" yet. I am waiting for 2 books to arrive in the mail, and once they do I am going to begin history with them first followed by spelling, writing, and grammar. We are already reading every day, so I am not worried about that. I got in the mail, and have been rereading, highlighting, and taking notes on the book, "The Well Trained Mind" by Susan Wise Bauer. If we do end up homeschooling all or some of the children this is the method of homeschooling that I will be following.
I started my no TV, no video games, no Ipod thing again, and with the exception of logging in to write my (almost) daily blog post, I too, am following the guidelines that I am asking my kids to follow. I did allow us to go to the movie store today because everyone is cranky and tired from a camp out last night, but we have been doing the "no media campaign" again since the end of last week. We have been reading a great deal, and going to the library here and there which makes me VERY happy. The kids rarely ask to plug in which surprises me, but I am grateful.
Other than that, life is humming along.
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