Jesus in the Boat

I spoke with my friend Janelle this morning. Her little girl has a severe chronic condition and had taken a very bad turn. My heart broke for her. Then she asked about Mason and she found out that Mason had taken a bad turn as well. (seven seizures in one day, with a dramatic increase in his tonic drop seizures)

To which Janelle responded with "I guess we're in the same boat today."

The next moment she burst into a familiar kids song - "With Jesus in the boat we can smile at the storm, smile at the storm, smile at the storm!"

You have to realize we were two mom's with tears running down our faces when we both burst into laughter.

This day has not been easy. We went into Childrens Hospital in the afternoon to weigh Mason. In the next day or two we will decide if we will restrict his diet yet more, or think about another medication. There really are very few, if any, options left.

Although it looks like another hurricane is comming our way, Jesus is in our boat.

More Seizures

Poor little Mason. He has been suffering from a really bad cold. He NEVER gets sick. But now that he is in kindergarten all day, he is exposed to that stuff so much more. The last cold he had was in only one nostril, and lasted only a few days. This one came with a cough, fever, goopy nose, etc. He missed two days of school, one of which he slept most of the day. Back to school today, and what a cranky kid he was!

His seizures have increased again in the last several weeks. In summer he was down to two or three per week. Now he is back at four or so per day. He has three kinds happening right now. Blinking, myoclonic (clusters of short body jerks), and tonic drops (goes completely stiff up to 10 or 20 seconds). They don't come as fast and hard as they did last year.

In spite of the seizures, he is continuation to learn! :-) For the longest time he said a nasally "hang" for thanks. A few weeks ago it turned to "ha gung". In the last few days it's closer to "hang hoo" for thank you. And he says teacher in school! Well, his version of it.

He naps in school, plays outside, spends most of the morning in the kindergarten classroom, sits well at his desk, follows routine well. Going on the bus is a definite highlight!