Still with the program

We had our appointment with the keto team last week. The diet is definately helping with the seizures. The only seizures Grace has had since starting the diet were the week she came down with pneumonia back in March - giventhe fevers she had that week, this was expected. The great news is that they responded to the medicine and were short. The downside of the diet is that Grace is not putting on weight. She grew almost two inches since starting the diet but she has not gained back the weight she lost since starting the diet. This puts Grace well under the fifth percentile for weight given her height. In addition, her hair is starting to thin and the hair itself is brittle. We need to take Grace for some additional bloodwork to check on her nutrient levels. She might be given additional suppliments to take to help resolve some of the diet side-effects.

The biggest shock I had from the visit was that our approach to get her to eat - allowing her unlimited protein - is exactly what the keto team would have recommended. I felt after our prior visit that this would not be allowed. I actually thought that by morphing the diet the way we did that she would no longer be considered under the program. I am happy to say that was not the case. I do believe that in this case the theory of being easier to ask forgiveness than permission held true!

Gracie's new passion is peanut butter. She eats several spoonfuls of peanut butter - at a meal! We are going through a small jar of peanut butter in a matter of days. When nothing else works, we are able to get her to eat peanut butter and McDonald's chicken nuggets - with the breading peeled off, of course!

Tom also started giving her some of the special Nano VM suppliments again. For a while, she was gagging on it and spitting it up, so we stopped trying to force this on her. Tom is the recipe master and he managed to mix the powder in with the ground up keppra and an absolute minimum of liquid. She already hates the Keppra and calls it her 'yucky'. Now, she gets the vitamins in along with the yucky. I guess she is expecting it to be yucky and she is ready with a drink to wash it all away, she doesn't realize that an additional yucky thing has been added in.

In other news, Rita turns 6 today! Happy birthday to the best big sister! We had Rita's party last night at Bounce U. It was a lot of fun. The energy level from 20+ kids her age running and playing was great.

Thanks for checking in and keeping us in your thoughts and prayers!
Marie, Tom, Rita and Gracie