Slow and steady - we are making the transition

Gracie finally ate a full meal at lunch time today. This was good news. Because she missed so many of her meals the last few days, she will start a supplement after dinner tonight to help her make up some calories - with the right ratios.

We started to find ways to make things work for her and we are learning how to calculate exchanges so we are starting to get comfortable adjusting her meal plan. Grace is now up to the 4:1 ration, which is the goal, so she is getting a lot of fat with each meal. We found that she will tolerate the heavy cream mixed with oil. She doesn't like it as much as the straight heavy cream so we give her some straight heavy cream and some mixed with oil. Tom has had to give her this via a medicine syringe - but she gets it all in. She ate peanut butter mixed with butter and tomatos mixed with mayo and macademia nuts - after we added salt and pepper! The goal is to find ways to mix the fat in with other foods. Before she went into the hospital she was eating butter by itself. For whatever reason, she will not eat the butter stand-alone in the hospital. Maybe because we want her to eat it!!

Gracie's energy level is very low. This is an expected side effect of the diet initiation. It is expected that her energy level will bounce back in about two weeks. Right now she is very lethargic. She gets a burst of energy after eating but it quickly dissipates. She is happiest just snuggling up in Mom or Dad's lap. Usually she wants to be carried but it is even more extreme right now. She has foudn that wuite a few of the nurses are happy to pick her up and carry her. She is very light and she just snuggles in so they seem quite happy to lug her around. Tom and I came back from classes twice today to find her snuggled up with a nurse!

If you have had any experience with CHOP - Children's Hospital fo Philadelphia, you already know how wonderful all of the people are that you encounter there. The ketogenic diet team is good. They get great support from the team of nurses, nurses assistants and child life specialists who are also wonderful. The people who come into contact with us - patient and family - are really supportive and helpful. We are very grateful to have such an excellent facility so close to home. One of the families in the program with us has travelled 5 hours from Virginia to be there. Every time we stay at CHOP, we meet families who have travelled quite a bit to be there.

My plan with Rita for tonight is to bake some cookies. We will not be doing this once Grace is back home. It would be really mean to torment her with the smell of fresh baked cookies and then not let her eat any. We are trying to find ways that Rita does not have to be deprived of sweets and such while not teasing or taunting Grace with things she can not have. Before Grace comes home, we need to get rid of all of the 'junk food' from her reach. Grace likes to help herself so we need to break her of that happen for now.

I left the camera at the hospital and I am home now so no photos for tonight.

All the best!
Marie