Today was Sarah's 20th infusion. She did great as always, though she is a little sore tonight and asked for some ibuprofen . She also had a little more itching than usual during the infusion, but I think she only took 1 Benadryl (we have been giving her two), so we had to add the second one in later during the infusion. I was gone when she was needing to be pre-medicated, so she didn't get motrin either.
We started the morning off with a phone call from the nurse practitioner from the immunologists' office. She already had Sarah's lab results back that we had drawn Monday. Sarah's strep-pneumo titers were pretty much non-existent before treatment. They want them above 1.8. Now they are in the 11-13 range! I know that the subQ can skew the labwork, but both girls were in a trough (meaning they were due for their next infusion, so it is closer to seeing how they are doing on it than if we did it immediately following an infusion). Sarah's IGG started around 800 (the low end of normal for her). In February, after 6 infusions, she was up to 1200 and was still getting sick, though definitely with less severity. She was still on antibiotics a lot though. We kept adjusting her dose, and now she hasn't been sick since April (not even needing asthma meds or anything) and she is at 1610!
Sarah also had visual therapy today. Her therapist has started testing her to see where she is at compared to before because they believe she is at the end of needing therapy. Before starting, she couldn't focus on things because her brain wasn't using her right eye at all. She would look at the word blue and say "baseball". I knew the issue wasn't that she didn't know how to read. When they tested in before starting the therapy, she was at a 2nd grade level in reading words. We could tell a difference within just a couple of months. Now she is solidly 6th grade, and she even had several 7th and 8th grade words! This is HUGE! It should also have gotten rid of her dyslexia issues (most likely caused by the amblyopia). She has to score that. We will know more when we go back to the eye doctor next Monday for her progress evaluation. But we are so excited!
God is so good! I am so thankful that we have been able to make such progress with Sarah's health, and that we have a team that is working so hard for us!
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