Adjusting to Life at Home

Kylie continues to do really well at home here. She’s doing great with her ileostomy and we are all adjusting to the new lifestyle. She is eating and sleeping great! Physically, she is doing really well too. She needs assistance from us when she walks, but she bears most of her own weight and takes steps on her own. It has been amazing to see what being home has done for her physically. I think that the biggest frustration/concern for Kaycee and I is Kylie’s continued strange behaviors. Her pupils are still very dialated which would seem to suggest that she is still going through withdrawal from all of the drugs that she was on in the hospital. Her behaviors remind us of that of an eight month old. She cannot be trusted. If I would lay her on the couch, I don’t doubt that she would roll off. She doesn’t understand that touching a hot pan would burn her. If I give her a bowl of crackers, she’ll grab a handful and then drop them all or try to stuff all of them in her mouth. She throws and drops food like crazy. She makes herself known very well with all of her screaming too. In spite of frustrating her parents, she has given us some good laughs. Her speech is continuing to improve slowly. It seems like her words are slow in coming out, which I’m guessing might be another effect of the steroids or drugs. It is so hard to believe that our sweet, completely normal little girl could take on these behaviors. We are trusting our Great Physician with Kylie’s behavioral needs and we would sure appreciate your continued prayers for her.

My wonderful husband has been an incredible help these past couple days since we’ve been home. When we came home from the hospital, you’d have thought that we’d lived somewhere a year from all the boxes and bags we hauled in. Kaycee was so great about helping unpack and helping with Kylie’s needs. We spent yesterday settling in, relaxing, and decorating for Christmas. It was a good day! We are going to get Carson tonight from Kaycee’s parents. They have been so sweet to keep him for the past couple days so that we could adjust to being home with Kylie. Kaycee’s parents have been absolutely amazing. Thank you Mom and Dad for all you have done to help us! Thank you again for all the time you have invested in Carson. We love you!