November 18, 2013:   The past few weeks we have all been sleeping again and life is getting back to normal.  Ahhh.  Although I still randomly freak out, and my husband is patient and loves me.  (He made me write that.)  Chase's gigantic cheeks have gone down a bit, and his appetite has come back after adjusting to the new medication.  About 2 weeks ago, there was a noticeable change in Chase and he started being able to focus better, even stopping to look us in the face.   His little brain has been so overwhelmed healing and learning so much, so fast.  He is now 14 months and had been evaluated by Early Intervention at 7 or 8 month old levels for everything other than gross motor skills, so we have some work to do.  Basically most of those skills froze in their development when the spasms started.

Early Intervention has begun working with Chase weekly at daycare, and he has upcoming consultations with occupational therapists for his eating issues and speech delays.  However, yesterday he really started babbling so that was very exciting for us!  Although Chase's new hobby of biting wasn't going over well at home or daycare, it didn't seem out of anger but him just wanting to chew.  The daycare has been reporting recently that they are noticing improvements, like he will actually sit and play with a toy for a minute and that he has clapped his hands together (although we have to see it to believe it!)

Chase's first Halloween- Witch Anna & Lion

Chase won't eat textured food-
EXCEPT Twizzler's?

I have also been connected with another mother in the area with a son about 4 months older than Chase who had Infantile Spasms.  Although their story is different as their son had a stroke in utero and began having seizures the day he was born which then turned into IS, it was SO, so wonderful to talk with someone who truly understood the diagnosis and had been through the same things.  I hope to see more of her and meet the rest of her family.

Tom and I have now had time to sit back and reflect on what has happened the past several months and it has brought the most emotion and tears.  We had literally been running on autopilot (and fumes), just getting done what needed to be done.  We are so grateful for how Chase is doing now, realizing the odds and how badly this could have gone.  We have been amazed the most at the generosity and kindness of people we barely know from our church.  Just yesterday we received a pile of Target and grocery gift cards in the mail from the Pastor at our church, and a sweet card for Chase made by a religious education student.  This week a new friend from the church is coming over to meet Chase and bring a quilt they made for him.  Tom and I are looking forward to helping others in the church in some way who have gone through similar situations, when things slow down a bit for us.