So much love

We are overwhelmed with love. When we thought about creating this blog, we had no idea how many people would reach out with a comforting word or inspiring story, etc.

It’s a strange feeling to try and deal with the shock of all of this. Sometimes it feels like an academic exercise, learning about the signs of strokes, and trying to understand words that I (Katy) had never heard before. Then the reality seeps in again that this is not happening to another family, this is happening to our family, to our little girl. At times it’s an unbearable realization. Sharing has been incredibly cathartic, and I feel like a weight has been lifted. We hadn’t shared the news with many people outside of our close family and friends, but we had started to feel as though we were keeping a secret, and that was never our intent.

Tomorrow we’d like to address some of the specifics of the many questions we have been asked in depth. For now, we will answer the two most common questions that we have received:

Q: Does this diagnosis affect Emma’s life expectancy?

A: The answer is, unfortunately, it could. Emma’s condition leaves her at a greatly increased risk for stroke, aneurysm, hemorrhages, and kidney failure. There is no medicine she can take to reduce these risks. She has fragile blood vessels, and bleeds easily.

Q: Has Emma been reaching her developmental milestones?

A: No. Since six months of age, Emma has been missing milestones. From sitting up and rolling over, to babbling, Emma has been several months behind. We have weekly sessions with a local organization named “Birth to Three” who have been providing Emma with occupational therapy.  Emma still rarely responds to her own name; doesn’t like to play with others; doesn’t recognize herself in the mirror; doesn’t indicate when she needs something; doesn’t imitate our gestures or shake her head “no” or wave “bye-bye”; doesn’t frequently respond to voices; and doesn’t play games such as peek-a-boo or pat-a-cake. That being said, she can walk, climb an entire flight of stairs, get herself to standing in the middle of the room without assistance, and is a very gentle little soul.

So once again, thank you. Thank you for thinking about our little lady. Thank you for your words of encouragement and support. Thank you for your love. Our little family may have some struggles ahead, but we are so incredibly lucky to have such phenomenal support.

With love back to you,

Adam, Katy, Daniel, and Emma.