Hilton Head 2009

We had a last-minute opportunity to go to Hilton Head Island this past week. My extended family goes there every summer for a family reunion. We have not been able to go every year but it worked out this year. We had a great week overall. Jacob got to play with his cousins, ride waves, and build sand castles. He rode his bike a lot. Macayla got in the ocean with Jennifer and me. She sat on the beach in a special chair I made for her. Pictures of the chair will follow soon. We had big meals. Fishing. Crabbing. The works.

Unfortunately, Macayla started having seizures on Thursday afternoon. She had her first one on the beach and ended up having eleven big seizures total. She did a lot crying out during the seizures, sometimes called an "epileptic cry." She had them all day on Friday, every two hours and two more during the night. She had another on Saturday morning when it was time to leave. Thankfully, the ride home was seizure free. We had a lot of suctioning to do during the ride, but no seizures. As of this morning, she still is exhibiting many of the precursors to seizures, but she has yet to have any. We are not sure if she is done. But we have never had eleven in a row. The beginning of June started with six, but usually she may have three or four tops. She stopped breathing on each one. Her oxygen saturation did not drop as low as usual, but it stayed down longer. That may not be significant, but it was different. She would not respond to diastat or versed. These are the two medications we keep meant to stop seizures. So, we really did it all this past week. In spite of the seizures, we had fun. Macayla enjoyed the pool and even laughed out loud multiple times while she was in the water.

This is one of the few vacation spots where I wish we could live year round. Maybe a church on Hilton Head could call me to be their pastor. We wouldn't complain about that at all, especially if they provide a parsonage!