The ACTHar injections usually stops infantile spasms on the 3rd day of therapy. Not much changed the first couple days and Paisley had a cluster in the morning on the 3rd day and a really bad seizure that night. It didn't look promising. On the 4th day of injections she didn't have any clusters, but another bad seizure that night too (maybe not a infantile spasm, it looked kind of clonic/tonic; I don't know). That was on Monday and that was her last seziure/spasm, and it is now Friday! One more week of the high dose (2 shots a day!) and we start to taper off. So far so good! Althought the doctor is expecting the spasms to start up again after the therapy is done.
A home health nurse comes twice a week to check Paisley's weight and blood pressure. Everything is going well with that, except she has gained a whole pound in a week. She is so fat in the face, legs, and belly. She has been very grouchy and very hungry. When she eats she sounds rabid! She also has teeth coming in now. FINALLY, and it's not just one or two, but FIVE teeth really popping out. I'm going to miss that gummy grin. Her therapies are going great. She is rolling from her side to her back, holding on to certain rattles for minutes at a time, and holding dolls by their hair, haha. She even tracked objects a little bit.
I colored just my bangs a dark auburn, almost black. With my light face and bleach blonde hair it's a lot of contrast and I am more appealing for Paisley's eyes to focus on. I don't think many people like it, but my baby does so oh well! Also, I'm hoping to start a new shift at work to have more time with my baby and hopefully not miss so much work to go to her therapies, doctors, etc.
Keep sending those good spirits our way!
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