Steroids Day 2!

Now that we are home and settled I thought I would give a quick update!

Charlie Claire was a ROCK STAR on her first road trip! She settled in quite nicely to the hotel life!

She enjoyed the bed, the big bath tub and having Mommy all to herself! Charlie Claire did great in the car and was super happy to get home to Jackson!

Jackson also had fun during his time as an only child! He got to hang out with Nicole, Caitlin, Aunt T, Toni Ann, Mimi, Papa Jim Jim, Aunt Nicole, Hope and Lucy! Aunt T took him all around town and he certainly enjoyed being the center of attention!



Talking to Nicole!

So, now onto medical stuff! C started her steroid Wednesday night and so far we haven't noticed any fussiness - fingers crossed it stays like this!  She went to the dr this morning for a blood pressure check because the steroids can make her retain water - everything looked normal this morning.  We have been keeping count of her clusters and can't say we have noticed a big difference yet but it still may just be too early to tell.  We are all praying these steroids do what they need to do.

If you are anything like us you may have done some research on infantile spasms and we know that the internet doesn't paint a pretty picture of what is going on.  What we need to focus on are the positive things right now -
1: C is AWESOME!
2: we caught the spasms fairly quickly and now just need to stop them quickly
3:  Her spasms are coming from one localized area and not affecting her entire brain
4: We are seeing great doctors
5: She has SO MANY people that LOVE her!

So, while the infantile spasms aren't so great we have some good things on our side and we all are feeling really positive about the long term for Charlie!