The day started well today. Levi slept comfy all night, and I was so tired I actually slept good as well. The morning bottle went down fine; we changed his clothes and headed out onto the playground for some sunshine and fresh air. Levi loved it! We relaxed on a bench and after a while he fell asleep. When we came back to his room he slept for 2 hours. Poor little guy was all tuckered out. The dietitian came to see us shortly after we returned. This meeting was very clarifying for me! I thought Levi's meal plan of four meals a day included four bottles and 2 solid food meals. I was wrong. He does not get a bottle of ketocal with the solid food. Suddenly everything made sense! I swear I could feel the tension in my shoulders begin to melt away. So the plan is for Levi to have a breakfast of scrambled eggs, applesauce, and cream at 8, ketocal bottle at noon, dinner of Gerber turkey, real green beans, and cream at 4, and a ketocal bottle at 8, supplementing with flavored water in between. I like this plan very much for a few reasons: 1) He takes solid food better than liquid right now, and I don't have to spend all day trying to force feed him formula; 2) He used to get supper at 6ish, which made it difficult to go out during the evening. Now we will be free to actually take him out if the mood so strikes; 3) The meds will be much easier to give than they were before.
Every morning and evening I used to measure out several liquid medications, putting them in an ounce or two of formula, fix his bottle, fix solid food, and proceed to feed him as much as possible. Most often he took the meds no problem, but there were times that he was super stubborn and it would take a long time. Now we will be giving 2 of his meds on a spoonful of sugarfree jello, and the rest will be dissolved into 2 mls or so of water and given by syringe. Of course he doesn't like the taste, but he takes it like a champ, and it's all so much EASIER! All this time I thought the diet would be so difficult to administer, but I'm finding that it will make my life better. I like that!
The seizures have been very high. Yesterday the count was around 178, and today 193. This is not a sign that the diet will not work. Many children go through this in the beginning because of all the changes going on at once.
Today he did a wonderful job of eating his very first ketogenic meal. The bottle at 8 was again the most difficult, but he managed to only leave a little under an ounce this time. His blood sugar has held steady in the 80s to low 90s which is terrific. Thank God for that! The urine check this afternoon revealed his has attained a state of ketosis! Everything is going very well. We should be home tomorrow!
Below are a couple pics of Levi in the swing at the playground.
Every morning and evening I used to measure out several liquid medications, putting them in an ounce or two of formula, fix his bottle, fix solid food, and proceed to feed him as much as possible. Most often he took the meds no problem, but there were times that he was super stubborn and it would take a long time. Now we will be giving 2 of his meds on a spoonful of sugarfree jello, and the rest will be dissolved into 2 mls or so of water and given by syringe. Of course he doesn't like the taste, but he takes it like a champ, and it's all so much EASIER! All this time I thought the diet would be so difficult to administer, but I'm finding that it will make my life better. I like that!
The seizures have been very high. Yesterday the count was around 178, and today 193. This is not a sign that the diet will not work. Many children go through this in the beginning because of all the changes going on at once.
Today he did a wonderful job of eating his very first ketogenic meal. The bottle at 8 was again the most difficult, but he managed to only leave a little under an ounce this time. His blood sugar has held steady in the 80s to low 90s which is terrific. Thank God for that! The urine check this afternoon revealed his has attained a state of ketosis! Everything is going very well. We should be home tomorrow!
Below are a couple pics of Levi in the swing at the playground.
No comments:
Post a Comment