Longing for Home

Christmas is my favorite time of year and it is so disappointing to be missing out on all of the festivities of the season while up here in the hospital. I am so anxious to go home and decorate for Christmas and do some holiday baking. Kylie and I talk everyday about Christmas and what we will do when we get home. I really attempt to make home the focus of our conversations. Everyday, I remind her that she’s at the hospital so doctors can help her tummy get better and that we’ll go home when she gets stronger. We are very hopeful that she will be home by Christmas and we’d appreciate your continued prayers for Kylie’s physical strength.

Kylie is doing really well with her ileostomy. She honestly doesn’t even seem to care or notice the bag. With all of the tubes and procedures she has been through, this seems like it is nothing to her. The ileostomy nurse comes in every day to give me a little teaching session so that I will know how to care for her when she goes home. I would compare the process of changing out the bag similar to changing a diaper, but even a little more unpleasant. As unpleasant as the circumstances might be for me, I must strive to be positive for Kylie. I was really dreading the first time I had to change the bag. However, with today being the third day of practice, it is only getting easier.

I have seen some good improvements in Kylie’s speech today. She’s been speaking much more clearly and putting 2-3 words together occasionally. Smiles haven’t been nearly as difficult to get lately and she’s continuing to support herself nicely in the sitting position. Behaviorally, she is still doing some weird things. However, I’m not too worried because the doctors don’t seem to be real worried. They seem to think that her behavior is as a result of her ICU stay as well as the medications she has been on. She’s had some trouble with wanting to put small toys in her mouth. This is so funny because even as a baby, she was never one to put things in her mouth. The way that she handles a toy reminds me of a baby who is just learning to hold a toy. She can’t grasp them very well and she drops them easily. With as sick as she’s been, I guess this shouldn’t be surprising to me. I am so grateful for the physical and occupational therapists who have been working with her daily.