Guest guest Posted April 27, 2004 Report Share Posted April 27, 2004 Kathy, Thank you for the update, it is nice to hear about Audrey, although I am sorry she is still battling pulmonary infections. We have been in the same boat with Chelsea. She is being weaned off phenobarb (YEAH!), and has been swallowing more. Unfortunatly, she seems to be aspirating more, which is a huge concern when she is tired. She has also had 'awake' days and very 'sleepy' days recently. Sat & Sun, I could not keep her awake, yesterday, she did very well at school and then made it thru a dr's appt and the rest of the day with only a couple cat naps. There never is any rhyme or reason. We all have times when we want to stick our heads in the sand, it is a natural coping mechanism. Some days, I just don't want to wake up! When Chelsea is doing well and seizure free, it seems like it could last forever. Then she has a seizure, and I spend the rest of the day trying not to be bummed. You'd think after dealing with epilepsy for 4 1/2 yrs, you'd get used to it. Don't let Amie feel guilty for getting away. ALL OF US need to, and most of us don't get away enough. Your son is being unreasonable, IMHO, and needs a little empathy for Amie and all of the care and work it takes to keep Audrey alive and well. It is a full-time job, we just don't get paid money, and every job needs a break or insanity is just around the corner! You are a great mom and grandma, keep up the good work! e, Chelsea's mom(nonspecific mito) Quote Link to comment Share on other sites More sharing options...
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