Monday, October 17, 2011


Miss Maia had surgery today to untether her spine. It went well. It has been really hard on me to watch her be in so much pain today, she cries in a way I have never heard before. But, they seem to have gotten it under control, and she is sleeping. She whimpers a little bit here and there in her sleep though. Poor little thing. I am staying at the hospital with her and hardly slept the night before the surgery so I should be tired, but find myself inclined to stay up an stare at her instead of sleeping. She is such a little trooper. So is JD, who is being so good playing at home with Grandma all day while the rest of us are spending our time in the PICU once again.

There are some unknowns about whether she will need further treatments in the future, and some of the potential effects of her problem. But for now, I just want to talk about how elated we are that the surgery went well, what a relief it is to have it behind us, and how blessed we are to be in the hands of great doctors at an amazing children's hospital. And that we think she is absolutely perfect, no matter what happens with her spine. We have found a lot of comfort in the support and love of friends and family on this long day.


  1. Tell Maia we love here and give her hand a little squeeze from us! Thanks for calling yesterday, and for the updates!
    Love you!
    Allison and Ammon

  2. Thank you for posting about your experience. My son is to have surgery on his lipomyelomeningocele in 3 weeks and it's helpful to read other's experience. Thank you.

    1. Hey Nicole, I don't see any contact info on your profile....if you want to talk about your son, feel free to email me at eliseejohnson at gmail dot com. I met another lipomyelomeningocele mom through this blog and it has been great to have someone to talk to about the condition, concerns, etc. I'd love to hear more about your son and how you are doing!