Christmas Changes

Macayla had her seizure on Friday night and we had planned to go to Aiken to see my family on Saturday. We postponed until Sunday and for good reason. Macayla had more seizures on Saturday. Sunday morning she seemed more alert and so we went to Aiken. Things went well, though they were a bit more rushed than we had wanted. We were planning to come home on Tuesday, and that morning Macayla started throwing up. It started just before her feeding so her stomach was empty. She threw up 12 times or more over the course of a couple of hours. Her abdomen was distended and we guessed that her bladder was full and she couldn't void. We had to get a catheter from a local home-health store in Aiken and as soon as Jennifer started to insert, Macayla let go. She deflated like a balloon and she relaxed. It was amazing to see her become so peaceful. We guess the pain was causing her to throw up. But then, she had another seizure. We have really been testing the endurance of our suction machine this weekend. Not only has it been needed for vomiting spells, but she doesn't process saliva and mucus as well as before.

But this is part of a trend with Macayla. Every year since her seizures started, she has changed the most between Thanksgiving and Christmas. She always digresses in measurable ways during those times. In 2005, just before the diagnosis, Macayla stopped running over the Thanksgiving holiday. She never ran again. I believe it was Christmas Eve of 2006, Macayla took her last bite of food, her Nannie's macaroni and cheese. Of course there were changes in her walking and motor control and responsiveness throughout the years, but the majority of the changes seemed to pile up at Christmas. Seeing all of these changes at once always makes you wonder if each Christmas is the last one you will have her. This year is no exception. Macayla has shown loss of tone in her tongue, a sign that her muscles around her airway could be loosing tone. This has made it harder to suction her. Her eyesight has changed this year. Her ability to swallow is almost gone. We also believe this bladder problem is neurologically connected and not merely a mechanical issue. She went a long time without voiding recently and almost got a catheter that time as well. She never seems to void unless she is awake and now that is proving more difficult. As the brain changes, the body changes. Once again, we wonder if this is our last Christmas. It's hard to have a perspective on it when each year we enter new territory in the disease. We pray for wisdom and strength as we enter this territory.