Things are getting a little bit better

Gracie did a bit better today with eating. She managed to eat at least 75% of each meal. She is still at only half of her fluid intake levels but we are trying new things to get her to drink. Gracie was not a soda drinker so diet soda is a novelty to her. She drank about 6 ounces of diet grape soda today. She is allowed up to 12 ounces a day. She drank her decaf green tea with sweetner and she drank some water. She is looking for her cup more today.

The hard part about the eating and drinking is that Grace actually gags on the food. We have been forcing her to eat and we don't let her get away with saying she doesn't like a food. For the fluids and heavy cream, we have been using a syringe to get it into her. Our stopping point has been when she starts to gag. Sometimes she gags on even water. If she spits something out, we weigh it and give her another bit of whatever was expelled. We are trying to teach her that spitting out her food will not make it go away.

We weighed Grace again this morning and she lost more weight. She looks very thin and tiny right now. Her skin is getting a bit better. She had a bath last night with bath oils in tub so that may have helped (along with forcing fluids). The dry look to her skin is gone and most of the peeling skin has cleared up.

We are still struggling to let Rita eat what she needs /wants to eat while Gracie is in the room. For lunch today, we had chicken salad. (The picture today is of her lunch - chicken salad, two slices of mandarin orange and a soda bottle cap in orange to give a perspective on the size!) This is great for Gracie as we can blend a lot of mayo in with the chicken. However, Rita wanted crackers with hers. If we gave Gracie a Ritz cracker, her portion of it would be about 1/3 of a single cracker as her carb exchange. It just doesn't seem worth 'blowing' her carb exchange on something with so little bulk. Instead, we used her carb exchange to have mandarin orange slices. Gracie got 2 slices for her lunch. However, when Rita was given crackers with hers, Gracie cried and gave us all looks like we were evil. All afternoon Gracie kept reminding us that we did not let her have any crackers!

Tom and I wonder if we are just imagining this or if not hearing her talk much in the hospital threw us off but we think that Gracie is speaking a bit clearer today. We all (Tom, Marie and Rita) seem to understand her a bit better. We are hopeful that this is a small improvement due to the diet. Gracie is still very tired and sleeps more than usual. However, when she is awake, she is totally normal. Each day, she seems to be awake more and more so this is good also. The pictures today are of the girls playing with makeup Rita got for Christmas. Gracie sat to let Rita be the make up artist!

We know that this diet will not be easy. However, we are hopeful that the benefits will far outweight the negatives. Thank you again for your support and for all of the positive thoughts and encouragement!

Love,

Marie, Tom, Rita and Gracie