We are all battling colds right now. Grace started with the sniffles on Friday and it progressed through the weekend. Her sleeping and her appetite are off. As I sit here typing, Tom is working to get some dinner into her.
Grace continues to be stubborn. The other morning she woke up and announced that she wanted pancakes for breakfast. Well, pancakes are not on her diet plan. Grace didn't much care, it was pancakes or nothing for her. She snubbed her nose at the porkroll with cheese that Tom made for her instead. Usually, she loves porkroll and cheese. That was one of the mornings we had to force feed her. She ate some of the porkroll but we had to put the oil and heavy cream in syringes and force them into her mouth. It's not pretty but we are willing to battle for every calorie we can get into her!
It is so tough to just not give her what she wants to eat. The puppy dog eyes and pouty lips are really hard to say no to over and over. It's even sadder when what she wants is a reasonable request. She is sick and wants orange juice. It is not on the plan. She wants more carrots with her dinner but she already ate her portion of carbs for the meal. She wants fresh fruit and we have to tell her no. Some of this just defies logic and common sense. However, the diet is working for her. So as hard as it is to tell her no, we keep with it. We are not ready to give up now.
We have our next follow up visit for the ketogenic diet on Thursday. This time we will see the nurse practitioner, the nutritionist and her regular neurologist. We are waiting to see what labs they want to do on her that morning prior to her visit. We don't like having to have her blood drawn but it is SO much easier at the hospital than at the outside lab. For starters, the folks at the hospital deal with children who have trouble getting blood drawn on a routine basis. They often have success on the first stick. Sometimes it takes a secnd stick and rarely a third try. Outside of CHOP, it usually takes 4 or 5 sticks or more to get Grace's blood drawn. Secondly, the hospital labs get results back within hours whereas the outside lab takes two weeks. (yes, hours versus 14 days!) I will be anxious to see what her regular neurologist has to say about Grace's progress on the diet.
Thanks for all of the prayers and support!
Marie, Tom, Rita and Gracie
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Hi Marie,
ReplyDeleteWe have a pancake recipe using ketocal that is pretty good. If you would like, I can send it to you?
-Melinda (Abigail's mom)
Here is our pancake recipe. I don't know what Grace's calories, ratio, protein, etc are, but this will give you a starting point to calculate a recipe to her needs. For Abigail, this is a whole meal and is served with water to drink.
ReplyDelete16 g melted butter
9 g egg yolk
21 g cream
12 g ketocal
22 g egg white (beaten to stiff peaks)
I mix everything except the egg whites together and then fold in the whites. We have cooked this both as a pancake and a waffle.
Abigail reallyy likes to dip pieces of her waffle in the Walden Farms sugar-free pancake syrup - it especially helps that everyone else can eat a pancake & syrup, too, so that everyone's food seems "the same." I have also heard of people using flavored melted butter for dipping. We had this both for dinner last night and breakfast this morning!
Good luck!!
Melinda