A will be going in for her next IVIG one week from today. This seems like it has been an exceptionally long month. I really was expecting an upward trend in things but that doesn’t seem to be the case. A had about 4 days where she seemed to benefit from this last IVIG and then something happened and she backslided in all areas. John and I were pretty scared that she would not recover until the next monthly IVIG infusion. However, we were thrilled to see that she actually did recover on her own without any intervention other than a LOT of ibuprofen. That blip officially ended on Monday. We were bouncing along happily until today (Friday).
We went to our stroller class as usual and a child did something that bothered her. All the sudden, I saw the tell tale facial grimaces and eye rolls. It is so telling that it takes my breath away. I truly thought we were out of the woods for this month. I decided to be positive and brush that off. But from stroller class we went to soccer where she was extremely agitated and spent the time doing a certain OCD walk and sensory seeking activities. My heart pretty much plummeted right there. The one fabulous thing though, was that she was able to disengage, soothe herself, and then rejoin the soccer class. To the moms, it looked like she was having a miserable time. But when I asked her about it afterwards she told me she loved the class.
This afternoon I gave her a large dose of Ibuprofen to see if that will help and she did willingly take a nap. We’ll see how the rest of the day goes. I am very anxiously awaiting our next dose of IVIG next week!