I spoke with his doctor and she is still with us in trying to get to that strong level of ketosis. She is excited about the progress he made last week during the seizure free days. We are eager to reach that point, too, but are careful to be thankful for at least no regression. Going forward very slowly is better than going backward at all. He doesn't seem to have regressed these last few weeks. He can still use some words and is still trying to sing.
He had his swallow study done on Friday. Preliminary reports from the speech pathologist on hand during the test are that he is actually doing pretty well. We got to try three different textures for swallowing. He did very well with all three. She said she will not recommend a feeding tube for Philip. We are glad to know for sure he is swallowing safely. His regular speech pathologist will also be glad to know this.
One thing we are thankful for: He seems to have turned the corner in his outlook toward his meals. We have not had any real fits during meals since Friday. He has eaten all components pretty well and even taken his medicine decently which was becoming a problem for a while, too. Just that one switch in behavior would make our lives as a whole so much better. Since we are feeding him smaller meals more often in a day to facilitate ketosis, it gets difficult when each meal is a battle. That wears on me pretty quickly. Every parent has the responsibility of making their young children do what they know is best for them and this would be the epitome of that concept. We know the key to Philip's healing is in the food he is eating. If he doesn't want to eat it, that's not an option. He still has to eat it. We understand it means his quality of life.