May 9, 2010 - 9:15pm

Well it has been 3 days now since we have been home from the hospital and Ali really hasn't improved like we had hoped... :(  She has shown some glimpses but honestly we were expecting more.  She still doesn't really eat.  Saturday I got her to eat one chicken nugget and a bite of cottage cheese.  Today she had few bites of cottage cheese, a few bites of pork roast, some m&m's and a few sips of water.... Not really what we had hoped for.  So needless to say she still has her feeding tube in which we have to connect her to her pump every night and feed her for 14 hours throughout the night.  She does perk up here and there throughout the day which we are glad to see, but it never really seems to last all that long before something will agitate her and she will begin whining, or she just seems to get tired.  Also she shows no desire to get up and walk anywhere on her own.  She will if we make her, but not on her own since friday when she walked across the room to see some of Sydney's new dolls.  Her blood pressure is also still not down to a normal 3 year old level which I believe is pretty close to 105/65.  Her's are for the most part probably average around 115/75, and she is on two blood pressure medications for it - Lisanopril (2.5ml once a day) and Amlodipine (2.5 ml twice a day).  And sleeping - well she still does not sleep at night which means we for the most part don't sleep at night.  She probably averaged about 4- 6 hours of sleep a night. And that is not all at once - a couple hours to start and then one or two her and one or two there...  She has an appointment with her pediatrician on monday, so we will talk with her to see what more we can do - there is something that has been missed.... And we really need to find it......................