The most challenging thing so far hasn't been him wanting to eat more but getting him to drink enough. We didn't realize that would be an important part so you know what a challenge he has had lately. We have a new sports bottle type sippy cup but one he can hold. He can suck fine from it but mostly is not interested in drinking. The other problem is that we didn't know right when we came in and had them put his IV in his left hand. That's the hand he holds his cup with but he has it covered up now with the IV board so he doesn't pull the IV out. He can't grasp and hold it up with his right hand so that puts a damper on things. We are holding it for him now and having him drink every 5 minutes or so. He is supposed to drink 28-30 oz. a day. Just at lunch today, we may have found a solution. For the last few weeks, he hasn't been really interested in anything but water--no juices or teas, etc. So we were still assuming that would be the case. We learned this morning he can have most all of the crystal light flavoring additives, packets or liquid. We brought some of those for us since we like them in our water bottles so we tried a raspberry ice with his water at lunch. He really liked it so, after nap, we'll see if it has solved the problem. We may be able to get it into him after all. We were also surprised to know that all of the "zero" sodas are allowed. We don't drink a lot of soda but if he needs something to calm his stomach or if we are out, that's good to know.
We met with Mary Susan Spears, his dietician, for the first time this morning. She is a very kind lady and was easy to talk to and ask questions. We went over foods this morning and will cover different things each day. She was here for about an hour. There are actually some foods that are completely "Free". Salt, herbs, spices, extracts (pure vanilla, strawberry, mint), most artificial sweeteners, fruit flavored waters that have no caffeine, no calories, no carbs. A few kinds of nuts, black olives, and lettuce also make the list with limitations on amount. That was good for me to know. I can season meat and veggies or sweeten the cream, etc without factoring in carbs or calories. At lunch, he was resisting the cream, so we also used a little raspberry ice crystal light powder to flavor it. That stuff will make life so much easier. I think they prefer the liquid over the powder and I do, too. It has splenda as opposed to artificial sweeteners. But there are so many flavors of water additives that you can do a lot with. We found out our home-canned green beans, applesauce, and tomatoes, etc are great to use. It makes sense; we know exactly what is in them. Most all fruits and veggies are on the okay list; we just have to factor their carb and calorie amount. She will send us home with about 30 planned menus. That will be nice since it is all so new. She said eventually we'll get so good at it, we can figure things out as we go and improvise. After this morning, I can see how it will get better with practice.
His bloodwork and urine testing this morning does still show that he is not in ketosis yet. That is completely normal. It takes a couple of days for his body to process all the carbs/glucose it already has received and move into producing ketones instead. We are learning how to check for ketones in his urine which we will have to do daily. He also has to take some vitamin/mineral supplements and a laxative since the lack of fiber in the diet sometimes causes constipation. The diet is more flexible than I thought with calorie intake and timing of meals/snacks. He doesn't have to have these spaced out exactly like I originally thought. The schedule we had at home before will work fine. Also, if he is losing weight, always hungry, we just have to call and they can tweak it to make it what he needs. That's a relief to this mother.
I also found out that no significant improvement by the end of the week does not necessarily mean it will not work. It does take longer sometimes. They want us to have him on the diet for at least 3 months before we discontinue it. Of course, we are still praying for the 2-3 miracle.
He was unhooked from the EEG this morning. The epileptologist, Dr. Said, has not been by yet with those results but we will see her today. We did meet her briefly yesterday. He is somewhat free to roam now. We went downstairs this morning for a half hour to see the train display. Children's Medical Center Dallas has the largest stationary model train display in the United States. There are 8 running trains and lots of landscapes. It was fun to explore. This afternoon, after nap, we are going to the playroom for an hour. I'm glad this time he gets to be out and about a little bit. It helps 5 days go by faster.
Well, more later! Here's a picture of today's lunch and a little bit of the train display with a bus and a flag.