Lydia Eileen

Sorry for the lack of update lately. Everything here has been pretty stable since last Tuesday. That was Lydia’s last big seizure. We’ve seen slight twitches here and there, but she’s been fine since then - almost a week! She’s been awake and moving around more than usual and making more little baby noises as well.

As she has more and more good days, Micah and I are getting braver about going places. We took her to my parents’ house for my sister’s birthday dinner on Saturday and then to Micah’s parents’ house for his brother’s birthday dinner on Sunday. We’re even doing better about taking her places when she’s having seizures. Last Tuesday we took her for a walk and halfway through, she had a seizure and stopped breathing. We pulled the stroller over, let her know we we were there with her, let it pass and resumed our walk. My, what a skewed version of normal we’re living in.

So, things have been good these past several days. Once Lydia gets her vaccinations, we’ll be looking forward to taking her more places with us. We came to a point last week when we realized we were tired of sitting around the house waiting for her to die. It’s time to live life like we’re going to have her for a long time because, honestly, anything is possible. She is an amazing little girl and we’re proud to have a daughter like her.

Here are some pictures of Lydia meeting her Great-Grandma and Great-Grandpa Huff!