Working weekend 💪

Hi dearest friends, Mom here.

Sorry I didn’t get a chance to update yesterday. It was such a busy day with all Ceci’s teams visiting before the weekend started and they switched staff.

Ceci continues to heal and fight to get better. She’s doing so well for having so many different procedures done and is doing as much as she can to get back home.

Yesterday the surgery team came by to do G- tube training with her, since our strong gal wants to be the primary person caring for her own hydration needs and she did so well. She had already began researching online and knew many of the steps they were sharing with her and she asked some great questions.

Made me really take a step back and see how much our little girl has grown 🥲


Many of you have been by our side since we started sharing our journey online and have seen her grow from an infant to a toddler, then a school aged kiddo and soon a 16 girl that is learning how to do all her cares and take control of her own life 💓

She’s such an amazing young woman. I’m so proud to be her mom and I know that one day she’s going to do such incredible things to help others facing similar challenges as herself.

Now that I’m all mommy mushy hehehe 😊☺- I’ll update ya’ll on her medical journey.



Ceci received her final dose of Zosyn yesterday for her blood poisoning!!! So happy to be able to share that and it doesn’t appear that the sepsis caused any long term effects.

She is still needing a bit of pain medications, including her pain pump but she’s doing a little more each day. Today we were able to use a lift to get her to the recliner and she’s been sitting up in it for nearly 2 hours. We’re getting ready to play a few games of chess.

One of the bigger issues we’re having right now is eating and drinking. She was given the okay to start eating again a few days ago but she has no appetite. So we are going to slowly start g tube feedings of ensure. Fingers crossed she tolerates it.

Be back soon 🥰