Things have been going so well with Sarah's infusions that I often forget to update. She has now had 19 infusions (and will have her 20th this week), and it doesn't even phase her at all anymore. She still has some swelling afterwards, but it really isn't painful and doesn't keep her from doing what she wants to do. She has been on this same dose (12 grams every other week) since April, and has not been sick at all since. She has NEVER in her life gone 3 1/2 months without illness! In May, once I figured out that this dose was going to work for her, I took her off all of her asthma meds. She hasn't even needed her albuterol since then, and definitely not prednisone or an antibiotic. She isn't even on her "maintenance" inhaler (Advair to try and keep things under control so she doesn't need her rescue inhaler (Albuterol) as often). This is awesome!
Sarah will have to have her blood drawn before her infusion this week. She will be in a trough (we will do it the day before or the day of her next infusion), so we will get a good idea of how things are looking. Her last numbers looked SO much better, but she was still getting sick at that dose back in Feb (which was the last time we drew her blood). I cannot even begin to describe how thankful we are that this treatment is working so well!
Sarah also has her next appointment with the eye doctor a week from tomorrow. At that point, we are really hoping that we will be told that she is done with visual therapy. At her visual therapy appointment last week, her therapist said she was so impressed with her progress and she really thinks Sarah will be done. I think she has had about 21 visual therapy visits, whereas she was originally told it would be at least 30, so this is also HUGE! Since her appointment is at 11am on Wednesdays now, it would be fantastic to be done before school even starts since she would end up missing about 2.5 hours of school each week for this. Once she is done, she will still have homework 3 times per week for the next 3 months. But, right now, it looks like her brain is no longer suppressing her "bad" eye! As long as she wears her correction and keeps the vision clear in that eye, her brain will not revert back to suppressing it.
Soccer starts next week for Sarah, and she is really excited! She will go from playing 5v5 on a quarter of a field and small goals to 8v8 on a much larger field with larger goals. She is very excited, and Zach has been working with her a lot this summer. School starts August 14, and she is very anxious to see who she gets for a teacher. Either person this year will be outstanding.
Thanks for reading and keeping up with us. We definitely can tell your prayers are working.
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