I have given my last injection into my little girl's pricked-up thigh!
To date, I have given Myra 114 shots....
Paul did one...
Ugh....still makes my stomach queasy to talk about it.
Myra's Infantile Spasms (IS) have not shown up on an EEG since a week into the ACTH injections. She was having over 1000 seizures a day at one point. She continued to have the physical symptoms of the spasms pretty regularly through June and much of July. Now, she has an occasional jerk with her left arm, but they say they are not seizures. I believe them and expect these to go away just like the tremors they said will never go away, the facial twitches they said might never go away, the high tone they said could never go away...all of which have gone away!
Myra has never had any other seizure except these spasms. With her brain injury, doctors have told us her chances for having lots of different types of seizures is very high. And 1/5th of children with IS go on to have uncontrollable seizures for the rest of their lives. Myra is already proving she isn't part of the "norm" for brain-injured children, and I expect her to continue to walk in God's blessings and stay far away from that "norm". I'm excited to see what God plans to do with Myra these next few years.
Now that these spasms are gone, Myra can start to develop neurologically. IS delays development and can even destroy milestones already met. Since the spasms have subsided, Myra is already holding her head up off her shoulders about 75% of the time (which she lost the ability to do during her spasms), rolling over from tummy to back 95% of the time after her arms are propped in 'tummy time' position, rolling from her back to her side on her own and her vision is improving daily! Oh, the places she'll go!
In just a few weeks our baby girl will be ONE! We will have 12 months full of blessing after blessing recorded!
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