March 1st

It is hard to believe that we are at a new month already. Even harder to believe is that we made it through all of January and all of February with no Emergency Room visits!

Part of our discharge routine with the staff at St. Mary's ER would be a prediction of when we see each other next. Kind of like friends parting and deciding when we would meet up next. Of course, we were often invited to just come in to say hello or to perhaps just meet up in the grocery store. Generally, we would pick a date about a month out and say, see you then. I guess we were all resigned to the fact that Grace was a frequent visitor. As we left the ER on our last trip - Christmas Day, they joked, that they would see us in January. I told them that we were starting the diet in January so not to expect to see us until February.

Well February is over. Grace is still fighting with us about eating. But, we have not met up with our friends at St. Mary Medical Center in a while now! In December, making it one whole month seizure-free seemed liked a victory. Today is a reminder that this diet is giving Grace more seizure control than we thought possible as well as other unexpected little victories.

Tom and I have discussed sending a 'Thinking of you' card to our friends at the ER. Everyone there is great and genuinely seems to care about Gracie. They get to see her amazing transitions better than anyone else. A small little girl coming in on a stretcher just after a seizure or sometimes still seizing. They care and tend to her for few hours and usually before she leaves she is jumping on the bed! Grace often leaves the ER blowing kisses to everyone. I imagine they wonder what is going on.

I am starting to think that some of the fight Grace gives us is a matter of principle. Sometimes she seems to fight us right up until we get the sryinge up to her mouth at which point she stops fighting and takes what is given. When I look back, she did this a lot with medication as well. It is as if she feels an obligation to fight us - as if heart really is not in it. Then, of course, there are the other days when her heart is in it and the fight doesn't just stop with getting the syringe in to her mouth. I guess this is part of being a normal three-year-old.

I haven't had any photos to include lately. I let the kids use the camera to take some pictures and now I can't find it! It's time for me to check the purses and bags the kids play with. I'm sure it will show up soon. In the meantime, no photos for today!

A big thank you to all of the folks offering encouragement to us on this journey!
Marie, Tom, Rita and Grace