It's hard to believe 2023 is almost a memory! The year flew by. We continue to walk along with Joyanna on her journey, and while there have definitely been changes (August was rough), she has not declined drastically. In fact, she was calm with not many changes throughout November. In August, she caught a respiratory virus and although they have never siginificantly affected her before, this one knocked her down. In fact, on the worst days, I wasn't sure if she was going to make it through the sickness. She experienced several problems with her breathing and keeping her oxygen levels up. But she made it. God was not ready for her to go to heaven yet. Then, we saw mild changes in September and October and a steady November as I mentioned before. We have seen neurologic changes in the last few weeks and have raised one of her medications to address that. I think the major difference between her and her brother is that she responds well to the medicine each time. So, while she is declining, she is relatively calm as we stay on top of medicines to keep her comfortable.
She is still responsive to us and knows our voices and the voices of family and friends. She also still recognizes her favorite movies and songs but only smiles maybe half of what she did a year ago. She has an adjusted schedule now; she still goes to class but does not leave her bedspace for therapies. They come to her bed to treat her with physical therapy and occupational therapy.
We got a special opportunity last weekend. We tried for a couple of months this fall to get family pictures, asking a friend to come to BCHC to take them, but it just never worked out. We decided to wait until after the holidays and try again.. Then our church announced we would be having directory pictures to produce a new directory. Ben scheduled our time and we were both just thinking the three of us would be in the photo. Then on the way home, a conversation started about checking Joy out for the Saturday of the pictures and including her in the directory photo, also ordering the photos to have family pictures. We decided we would try to do it. Then, the conversation turned to...since we have her out (which is the hard part), we should take her back to the house and have our family Christmas with her. And that is just what we did. BCHC worked with us to get her ready for a therapeutic leave and we had her for 6 hours last Saturday. It was a fabulous time! She did so well. It did not stress her out and she was not agitated. We were able to get a pose for a picture and we ordered some of those. Then, the family Christmas was a precious time!!! She laid on the recliner at the end of the couch and we opened presents and watched Curios George Monkey Christmas (her favorite). We even got her to smile a few times. We will remember this time forever. So precious!!! She didn't have any medical problems during the entire 6 hours and I'm just sure that was God's grace. She also didn't get sick which is a distinct possibility when going "out". Praise the Lord!