maybe tomorrow

 

Although Sophia passed her car seat test this morning (approved for an hour at a time), her oxygen levels began dropping yesterday afternoon and rode around her minimum (88%) all night.  The docs decided this morning to monitor her another day (or more) to determine the cause.  It might be that her diuretics are not at the right level with the increased fluid intake.  She also has not been adjusting to her meds being given “PO” (orally) very well and especially doesn’t like the taste of the sodium that gets added to her milk 8 times a day.  Feedings have been traumatic as she is resisting and vomiting quite a bit again. We have tried all sorts of remedies to make the medicine more palatable, like adding flavor packets (the banana is really gross by the way) and giving it to her in pear juice but nothing has made it any better for her. Although she is such a good girl and takes it all eventually it breaks our hearts to see her in such obvious discomfort. The whole process is so tiring that she hasn’t been eating as much as she should so they upped her supplement again to 24 cals.

 

She just had another x-ray of her chest to determine if there has been any fluid build up, which could be a cause of the low O2 levels. At 2 we will receive reflux training which as far as we have determined means learning to raise the head of her bed but they treat it like it is a big deal so maybe there is more to it. The OT also dropped by to give us a thorough review of all the exercises we could do to strengthen her abdominal muscles, which is especially important for children with down syndrome and seems to be the reason she was so resistant to sitting in the car seat (by the way…it turns out that you can give your abs a work out just by laying in bed with a heavy book on your stomach so it is a good thing that Deb held on to all those old law school textbooks, no more crunches for me).

 

She continues to poop and pee (a lot), which everyone around here continues to tell me is a good thing, but I’m starting to have doubts.

 

We will keep you posted.