Well, Noah had a bit of a rough night last night. He’s stable this morning but he had a weird episode where he freaked me out enough to push the red emergency button above his bed. 3 seconds later the lights were bright and 10 docs and nurses were bedside. With Noah’s hypotonia, he usually does not draw his knees up to his chest but last night he pulled into fetal position, looked at me and looked in distress. Then, of course when everyone came in the room, he stopped and fell asleep! They ran a chest x-ray to see if he had had a heart attack or if a lung collapsed, but it came back normal.
Due to the fact that all his tests so far have come back negative, we will be here for an indefinite amount of time while further tests are run. The geneticist, who is one of the top in the nation, has informed us we are now in very rare stuff. Today they are requesting a lab in Delaware to do some genetic testing, results of which will take at least two weeks. There are still two tests pending that we hope to hear back on this week.
Thanks for checking in.