prayers and hope

All I've wanted to do is scream and let everyone know what a rotten day Zeta had yesterday.  If she wasn't sleeping she was seizing.  As I know all too well, that is not a great thing  - at all.  This morning seemed to start off ok, but after a couple of hours she was back at it again.  It's all very frustrating and so disheartening at times.  If you're a parent, you know that you cannot stand to feel as though there is nothing you can do for your child.

Fortunately, my focus has kindly been re-directed.

Take a look at this: (be sure to read the article and notice the date too)

 

 

On top of this, I just received an email from the Hypothalamic Hamartoma coordinator at Barrows asking to share our experiences with another family that is contemplating surgery. Again, I was reminded of how God has shown himself throughout every step of our journey.  Would I do the surgery again?  YES.  Did it help?  YES, it gave us nearly  5 months seizure free and gave us a chance to fully learn more about our little girl.  We don't know if the problems she has now are related to the suspicious inoperable area left in her brain or if it was something set into process from the HH previously or something stemming from her microcephaly or any of her other health problems. We just don't know.   For me, it used to be mostly about not knowing and wanting to know so we could fix it.  Now, it's just about trying to make her comfortable!

 

....but I've digressed far from my point.  The email made me realize that this has definitely been a process for all of us...and that although we've encountered many trying times we've always made it through......and through every step - even before Zeta was born- we were reminded that we're not alone.  We've been saved by grace and this life.....this place...this moment is just temporary.

 

Zeta is resting now.  Pray for more relief.

 

 

 

Psalm 56:8