Jaylie is still progressing very well on the ACTH steroid. It’s like the steroid has kicked her development into overdrive, woot woot! The neurologist has advised these IS (Infantile Spasms) seizures may have been going on for quite a while of which may have been stunting Jaylie’s development. Since Jaylie started the ACTH she has grown and developed leaps and bounds! It’s pretty awesome to witness.
Literally overnight, Jaylie has decided she wants to eat everything in site! This coming from a kid whom has shown almost no interest in eating anything her entire life. Now we can’t stop her from eating! She wants to eat all the time and eat everything! Check her out:
We are still seeing very slight seizure activity. The neurologist has advised she would like to see absolutely NO seizure activity at all before starting to wean Jaylie off of the ACTH, so this means we will most-likely be on ACTH for at least another 2 weeks (one more week at a higher dose to kill the seizures and another week of weaning Jaylie off the ACTH).
Please continue to keep us in your prayers. Jaylie immune system is high compromised while she is on ACTH and with flu season just around the corner we need God’s projection from being exposed to day-to-day life. We are doing the very best we can to limit our exposure to sickness, viruses, bacteria, ect but ultimately need God’s protection to keep us all safe and Jaylie healthy, developing and recovering.
As always, thank you all so much for your prayer and support! It works and is appreciated!
Nathan, Kristina & baby Jaylie