7:00 pm – March 28, 2019:
First of all, sleep is totally UNDERrated! It’s magnificent! I want more! We all slept really well last night, and our night crew here on A3N was wonderful. There were a number of things they had to deal with for Lilyan during the night, but they were practically silent, and we all mostly slept through those. Thank you for all who prayed specifically about sleep! Lilyan didn’t wake until 8:30 this morning!
Today was another good day, and more steps forward. Slightly more eating and lots more drinking, some hair pampering, and some special visitors. Four of Lilyan’s siblings, and one of her nieces came to see her. They have all been missing each other so much, and there were tears on both sides when they had to say goodbye.
Lilyan’s primary surgeon (orthopedic) came by this afternoon and said that, after an MRI tomorrow morning and a consult with the plastic surgery team about caring for the one drain that has to remain in place for a while, we can GO HOME! We are all ecstatic about this news.
However, he quickly snapped us back to the seriousness of this whole situation by warning us not to be deceived by how good she looks, and saying in a very somber voice that she is “far, far from out of the woods,” and that “that won’t happen for many months.” He has instructed us to watch for any sudden fevers, any funkiness with her incision, or anything that just feels kind of off. He is also still not liking the congestion in her chest and wants us to keep watching that closely. She won’t even be allowed to do any crawling or bathing (can shower, but not sit in a bath) for at least 3 months. She can sit and play on the floor with the other kids, but instead of flopping to her stomach and pulling herself around the room with her arms the way she used to do, we will have to lift and carry her anytime she wants to move to another spot to play. At one point, months ago, he told us that it could be as long as two full years before we can all feel completely certain that she has come all the way through this. We have a long spring and summer ahead of us — at least.
But this morning, with the help of a physical therapist, I sat Lilyan on the bed to do her hair for her, and I was shocked at how straight she was sitting. She immediately said, “This feels weird to me.” We asked her what felt weird, and she said, “I’m sitting up straight. I’ve never done that before!” It was an emotional moment. It’s incredible how different her back and her posture already are, and at one point last night, I was aware of some stress somewhere inside of myself. As I tried to determine the source of this stress, I realized with surprise that I was dreading this surgery, and then it struck me powerfully that it’s over! We have completed this surgery and are now more than a week down the road of her long recovery!
It wasn’t until that moment that I fully comprehended just how heavily this has been hanging over us for a year now. And it’s done! There are no words to express how thankful we are that this much is now behind us. We are ready to just keep walking forward into whatever is ahead now.
Thank you, thank you all for walking this part of Lilyan’s Spine Saga with us. Unless we don’t make it home tomorrow, I won’t be updating daily anymore. We will really, really have our hands full because Lilyan requires such full time care, and most of that can only be done by the two of us. And, of course, none of the other daily responsibilities that require our time, energy, and attention have gone away. In fact, some of our other kids are always very needy for awhile after we arrive home from a lengthy time away during a stressful period like this. Continued prayers for the coming months would be wonderful, and we will update as we are able.