Aaron has not been himself for about a week, right about the time we increased his seizure meds. He has not eaten anything since then and struggles to drink. He has to drink no less than 50 oz and no more than 60 ounces a day due to diabetes insipidus. (has to do with his sodium level). Some days he barely makes 45 ounces. His mood is good, he is all over the house and is still pulling himself up to a stand but something is not right. Now his body temperature is starting to fluctuate. Today it dropped as low as 96.1. So far it goes back up with his warming blanket after about 30-45 minutes. He also has a runny nose this afternoon. I am hoping that it is just a virus that he is fighting. He went and saw Dr T today and she was a little concerned about him. She increased his meds and told us to watch closely for any signs of an adrenal crisis. He had a bunch of labs done and he hates the dinosaur bed. It is a bed in the peds outpatient clinic where blood draws are done. As soon as the tech said put him on the bed he started screaming. It takes a few people to hold him down and it is horrible to see. I rub his head and give him kisses but nothing helps. I know part of it is him being blind and all of the people and sounds I just wish I could make it all better. He is such a sweet little boy and always has a smile. When he leans in for a kiss and wraps his arms around my neck my heart melts. I LOVE this precious little boy!!
love the curls!!!
getting toasty warm!!
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