Jerry was so happy all day and took a 3 hour nap. He has been waking with discomfort during naps too but today he only did that once in 3 hours so that was good. His night waking seems better too...a little less often and a little less severe in the screaming sense. We were sad to see Grammy and Nonno leave today...they have been so wonderful. I cleaned up my own dishes for the first time in more than 3 weeks today. It actually feels great!! It feels good to get back to doing more "normal things." I just hope this time we can hold on to it for a little longer.
JJ was eating so good in the hospital at the end. Since we got home, he has continued to eat less and less. I can't tell you how much stress it adds to the day to try to feed him. It is like a constant chore. The nurse practitioner at the appointment told me all these great fattening things to feed him but the problem is when he doesn't want to eat he really doesn't want anything. When he was eating in the hospital he ate EVERYTHING I gave him. He is also craving water like crazy. He has this word/sound he makes for water (the same word Isaac used and there is no way to spell it) and he is doing it constantly and will drink as much as I let him at one time. The doctors said that could be bad for him because if depleting his sodium (or was it potassium?) so I should give him pedialyte instead. I try not to give him too much so that he will drink his formula. Now I am actually really wondering WHY he is like this. To boost calories and because he may like it better than his formula, we may try pediasure tomorrow. Better get some sleep now while I can.
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Saying special prayers for Jerry today that his eating habits and sleeping patterns will improve.
ReplyDeleteMoira
maybe he was eating better at the hospital because of the meds he was on? Maybe they were making him hungry? I don't know -- just some ideas. Also, since he was having such a hard time before all this happened, he is a SMART boy -- he remembers how he ate when he was at home: not well....so, he may have 'learned' this eating (not eating) pattern and eating only in small portions/often throughout the day! It's a tough one -- is it a medical problem or behavioral? Saying some prayers for you guys....
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