Monday, October 26, 2009

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!


  1. Everyday is blessed with Lydia! It's so good te hear of her good days and your getting to venture out! It's just so amazing to see!

  2. Jen and Micah,
    I am Lisa A.'s Aunt Nancy in Virginia- thank you for sharing your precious little girl and her sweet pictures with us. I'm so glad you are out a little more and letting your family enjoy all of you. You're a blessing to all of us!
    Feel our prayers! In His Love... Nancy

  3. Thank you so much for taking the time to keep sharing Lydia with all of us - I love the pictures, especially when you take her out into our beautiful Connecticut autumn! My prayers continue for you and Micah and Lydia, and for all of your family. My fellow nurses at Connecticut Hospice continue to be amazed by Lydia and by the strength of love and faith you and your family have.

  4. Praise God for each day she blesses you! Lydia is preaching the greatest sermon on faith and trust I have ever heard. Bless you guys for trusting God and living faithfully.