7/31: Liquid Diet...When Awake
Leo ended yesterday with an intake of just over 2.8L and output of just over 1.5L. This trend has continued today, with about 2.35L of intake by about 8pm and at least 250mL to go. His appetite has decreased a little because of this. Granpa also noticed that somewhere around 40 minutes after the pump starts each dose of A10, Leo becomes extremely thirsty. This was also obvious from the daily log sheet where we keep track of the intake, where right after each dose there's a huge amount of liquid intake. Dr. Weaver confirmed that this makes sense because the antineoplastons are in a saline solution and, again, all the sodium makes him really thirsty. Leo's treatment is now 115mL of antineoplaston A10 pumped over 1 hour and 32 minutes (for a 6 dose total of 710mL) and 10mL of antineoplaston AS2-1 pumped over a meager 8 minutes immediately after the A10.
Although Leo's mood is good, the second bag of antineoplastons combined with the waking from thirst at night -- or whenever he's asleep and the pump gets going -- combined with the decadron make him really, really tired all the time. Even when Granpa takes him for a walk in the stroller while the weather is still reasonable (usually before 8am), Leo usually falls asleep for part of that walk. The surprising thing is that they go to check-out construction sites around here, with excavators, bulldozers, and all the other favorites (we've watched "I Love Big Machines 2" about 1,000 times now)! The sleepiness was confirmed and deemed "normal" by Dr. Weaver today (and we were told about it at the very beginning as well as by other parents and patients).
Speaking of decadron and how this boy is still "with it," he is supposed to take 1 little blue-green pill of 4mg and another 1mg yellow pill. He's used to taking the blue-green pill, but not the yellow. I got some cereal and milk and thought I'd put the yellow one with some cereal and trick him. Yeah, right. I started by priming him with 2 or 3 spoons of cereal and milk without the pill. Then, before the next spoon, I deftly snuck-in the yellow pill among the cereal bits -- I know he didn't see me, but he refused all my cereal attempts from then on! What a little stinker!
Sunday we met a 5 year-old girl at The Clinic from Oregon that was diagnosed with the same condition as Leo, pontine glioma. Fortunately she has virtually no symptoms other than her left eye slightly turning inwards. She initially had an operation on that eye to fix it and was going to have another one, when they did an MRI and discovered the tumor. I think they said she's one of 5 adopted children. A nurse also mentioned today that another little girl will be coming to The Clinic shortly with the same diagnosis.
Although Leo's mood is good, the second bag of antineoplastons combined with the waking from thirst at night -- or whenever he's asleep and the pump gets going -- combined with the decadron make him really, really tired all the time. Even when Granpa takes him for a walk in the stroller while the weather is still reasonable (usually before 8am), Leo usually falls asleep for part of that walk. The surprising thing is that they go to check-out construction sites around here, with excavators, bulldozers, and all the other favorites (we've watched "I Love Big Machines 2" about 1,000 times now)! The sleepiness was confirmed and deemed "normal" by Dr. Weaver today (and we were told about it at the very beginning as well as by other parents and patients).
Speaking of decadron and how this boy is still "with it," he is supposed to take 1 little blue-green pill of 4mg and another 1mg yellow pill. He's used to taking the blue-green pill, but not the yellow. I got some cereal and milk and thought I'd put the yellow one with some cereal and trick him. Yeah, right. I started by priming him with 2 or 3 spoons of cereal and milk without the pill. Then, before the next spoon, I deftly snuck-in the yellow pill among the cereal bits -- I know he didn't see me, but he refused all my cereal attempts from then on! What a little stinker!
Sunday we met a 5 year-old girl at The Clinic from Oregon that was diagnosed with the same condition as Leo, pontine glioma. Fortunately she has virtually no symptoms other than her left eye slightly turning inwards. She initially had an operation on that eye to fix it and was going to have another one, when they did an MRI and discovered the tumor. I think they said she's one of 5 adopted children. A nurse also mentioned today that another little girl will be coming to The Clinic shortly with the same diagnosis.
posted by Yury at 7:14 PM
0 Comments:
Post a Comment
<< Home