Just wanted to post an update for you all–I know I am not very consistent. I apologize, I just want to have new news when I post so you continue to be interested in Lily’s journey. My biggest fear is that Lily is “out of sight–out of mind” and the prayers will fade. She continues to make baby steps. She seems to be having more sensory reactions in her arms and legs. She makes a lot of jumpy and jerky movements with light touches to her arms, hands and feet. We are even seeing more spontaneous arms raises. All good signs that “things are connecting”. She is still sitting for extended periods of time and holding her head up. Sometimes she will hold it for over an hour but she has to be watching something or someone that captures her attention otherwise she is not motivated.
We made a trip up to Mammoth a couple weeks ago. Thankfully the weather was warm and we were able to take Lily on walks and rides on the gondola. Overall she seemed to fair well on the trip. We hope to take her up again in another couple weeks.
She is still very active with therapies including horseback riding however this week she seems a little under the weather. A lot of GI issues again; they seem to be great for a few weeks then she’ll have an off week. Its very tough on her and for us because she can’t talk yet and we just try our best to determine where she has discomfort. We are still undecided on the fundoplication surgery.
Yesterday we found out that Lily was not selected by the Knights of Malta for the Lourdes Pilgrimage in April. Oh well. It was exciting to think she could be selected but I know that regardless of going she is going to make a miraculous recovery.
Thank you for not forgetting about Lily and for your continued prayers for her and our family.