Many many people send me emails, private messages or comments on videos/posts asking this question.
How is Luke?
My normal response lately is "He's hanging in there... just kinda the same." but, I'd like to share some of the challenges and progress.
This photo below is one taken when I was in the garden tending to the new plants. I looked up and there was Luke... standing there, all alone and motionless. Most people do not understand or realize what I mean when I say he "just stands there". Look at his position in this photo. He literally stood there for at least 5 minutes like this completely motionless. The only reason he moved is because I just couldn't watch him like that any longer. I called his name and prompted some action. Without these verbal cues he can settle into a position and hold it for a very long time.
Challenges
Luke's smile has been a rare site over the last 16 months. His regression stole his joy and expression. Normally now he has this down turned countenance. In this photo with the kitty cat he was sitting very still in this chair for a good while. The cat took that as an opportunity to get some lap time. Notice Luke's hands. They are positioned under the cat. He's not holding the cat, that's just where his hands were when the cat jumped up there and got comfortable.
When we were at the nursery looking at flowers we took every opportunity to engage with Luke showing him flowers, asking him to smell them and to share his thoughts about how pretty they were. This is our effort to make him a part of what we are doing.
We still struggle with eating, drinking and sleeping.
Progress
In the last couple weeks we've seen Luke's smile more often. He seems to be "coming out of his shell" just a little. We've even seen him almost giggle a time or two! For the last 3 or 4 nights he has fallen asleep very fast and has maintained a decent sleep for more hours in a row compared to what has been normal for the last 16 months. He still sleeps sitting up but we are happy that he is actually getting some sleep.
Along with some smiles, giggles and sleep time another thing we've heard more is Luke's voice. Most of his communication over the last 16 months has been pointing and grunting (or very strained words). There have been moments recently where he has used his words without straining and even some pretty nice sentences!
We are seeing a new doctor that is offering a more holistic approach to his treatment. We don't know a lot yet so I don't want to say much about it, but we are hopeful.
Support
There have been several requests for me to get a PO Box for people to send Luke some love. I finally listened. Here is the address if you chose to send Luke a card or anything. He loves to see his name in print or in comments. There are no expectations here. I'm only putting this out there for those who have asked.
Luke Kirby
PO Box 392
Cibolo, TX 78108
Thank you for your continued prayers, well wishes and concern for Luke. We are encouraged by your love for him and us as we take this journey.
