Wednesday, March 2, 2011

ACTH update again

Day 27 of ACTH and things are still good.
Her blood pressure has regulated and swelling is still pretty minimal.
The extreme fussiness was helped with the addition of zantac.

She is still not sleeping well. Some days she will sleep great and other days she will sleep just a few hours all day.
Her appetite has calmed down a little. She is still eating 100% by mouth without any supplement of pediasure. We just started giving her stage 3 baby food last week with speech therapy and she did great and so far she has not chocked or gagged on it.
Also last week in speech therapy she had her first Gerber cheese puff and a grape sucker! She loved both especially the sucker.
She was a purple mess when it was over :)
It is crazy to think something as simple as a sucker can be a great therapy tool. We are teaching her to use her tongue more so that one day she will chew her food and that will also help with forming words one day too.

We are noticing a little more eye contact lately. She does seem a little more alert. I just miss her personality so much. Can't wait for the fog of ACTH to be over.

We are still celebrating...18 days no spasms and 12 days not seizures.
Praying everyday that this will continue once she is off the ACTH injections.
Thank you Jesus!!


  1. How amazing! She is doing so well! Congrats :D We love you all!

  2. WHOO HOO!!!! Celebrating with you!!!

  3. Yeah!! What a great update Erica. :)