So Sarah has still been fighting a sinus infection after going off her clindamycian the beginning of last week. I took her to the doctor today because I knew she needed to go on a 30 day course of antibiotics like Anna is currently doing to get it all out of her system. Her lungs are clear, but she is definitely fighting a sinus infection. She gets them chronically and are difficult to get rid of. She has been on 4 rounds on antibiotics since November, and each time, as soon as she goes off them, the infection is right back. This should really help though. Her lungs sound clear, but her spirometry numbers her way down. Last time when she was healthy, they were around 110. Today they were around 70.
They also did get Sarah's labwork back that we had done last week. We had it done right before we did her last infusion, so she was in a "trough" instead of a "peak", so we were especially pleased with the results!
- Her CBC is all totally normal.
- Her T cells and B cells were both slightly elevated, which indicates she is fighting off an infection
- Her IgG is actually HIGH. Now the immunoglobulin therapy can skew that, but since it was the end of the cycle and right before her next infusion, it is also her own body keeping it up too. Also, her IgG was in the normal range before, but the doctor said that just because it is good "quantity" doesn't mean it is good "quality". But, before it was in the 800-range and now it is over 1300!
- Her IgM and IgA are also both higher than they were before.
- AND, when we first drew her blood back when she was 2, and she hadn't had any extra pneumovax shots, 13 of her 14 strep pneumo titers were sub-level. As she has gotten 4 extra pneumovax shots, many of those had come up, and I think only 5 or 6 were sub-level last time we checked. With this bloodwork, only 4 are sub-level, and the others are a lot higher than they were!
SO, we know the IG Therapy is working. We just have to find the right dose. So, we are upping her dose from 8 grams to 10 grams every other week. It does mean we have to add a third infusion site (so instead of 2 needles, we will be doing 3), but I am confident that between the big antibiotic push and the new dose, she we can get her to where she isn't getting sick as often. Her illness are less severe, and she looks better and feels better overall, but they aren't less frequent yet.
Sarah also had her 2nd visual therapy (VT) appointment today. The therapist checked on the stuff she was working on at home this week and was pleased with her progress. This week she is focusing more on focusing. So, she will have to look up at a letter chart 8-10 feet away and say and copy each letter in upper case and lower case. And she will have to follow along paragraphs with "random" letters. She underlines, and each time she comes to the next letter in the alphabet, she has to circle that letter. If she misses even one (meaning she isn't really following along and focusing on each letter), she will not get to Z in the paragraph. She also has to use "flippers" (one side is a +1.00 and one is a -1.00) to read letters and numbers. This works her hard. She will go back next week to see how she did with this week's activities.
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