Philip is very slowly but steadily improving. He can stay awake just a little bit longer each time and get a little more food into him. In fact, the last two meals have been full meals in one sitting. He is meeting his fluid goals again each day. This morning, I added back in his supplements and vitamins. We were just concentrating on his seizure medications and sodium bicarbonate while he was having trouble with vomiting and eating. He did so well yesterday we will probably stay on his normal meal plan now.
The doctor explained to us that many kids respond like they would with the flu. Philip definitely fits in their category. It is almost a carbon copy to his bout with the flu in February but with no fever. He was so weak and tired for days both times. He has certain mannerisms that we know now we should expect in this kind of situation--small things like involuntary muscle movements (eyebrows lifting, bottom lip pulling in, head turning to the right, eyes raising upward). These are not necessarily seizures. They are slow and repetitive, some reaction of his nervous system. The thing most noticeable is no seizures. He didn't have any during the flu and he hasn't had any since Tuesday. It's too early for me to come to a solid conclusion. We hoped that the flu in February put him into ketosis. Seizures returned in two weeks once he started eating food again for a couple of days. This time he is in ketosis but the good thing is (Lord willing) he will stay. He started eating full meals yesterday evening. As he gains strength and continues to progress, of course, we will be watching him closely. The above mentioned muscle movements are getting better. His lips and eyebrows are no longer affected. His eyes and head are still prone to continue but only when he is getting tired after being awake for a while. He is not really alert and active yet but I think he should get there in the next few days with the progress he is making. He does respond to us with a couple of words but he hasn't smiled in several days. He will look at a book, or the TV or the computer when something grabs his attention but he can't maintain that attention throughout the whole book or video. Unfortunately, he has slept so much that he has day and night mixed up. The first night he did that, he was awake most of the night. I worked to keep him awake in the evening for the next two days to try to help him and he made it longer stretches but still wants to be up at 3 or 4 in the morning. That takes its toll on everybody (although Joyanna and Ethan are doing pretty well sleeping through). Please pray for Ben and I to get the rest we need so we can continue to function daily. Please pray for Philip to make progress in strength and alertness and of course, pray that the seizures really are gone for good!
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Philip & Joyanna's Story
December 17, 2009 -
August 25, 2018 Philip's memorial slideshow and funeral service can be viewed by clicking on the "Philip" tab at the top of this page. You can read more about Joyanna's story by clicking on the "Joyanna" tab at the top of this page.
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March 2024
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