This is a blog about my family; Michele (I'm the mom), Dad Josh, big sister Zoey Lynn and our new addition Riley Rose. Riley was born with 22q11 Deletion Syndrome aka DiGeorge's Syndrome which we are finding to be a daily challenge
Monday, January 10, 2011
1-10-11 3pm
So Riley had a decent night - only a couple of drops in her O2 while she was down to regular room air with it being pushed at 1 liter. So this morning they decided to take it completely off and see how she did during the day. We will also be watching her this evening without the air and they will be monitoring her breaths as they want to make sure she isn't dropping her O2 while she sleeps do to sleep apnea. She has kept her O2 up all day and we have had lots of talk and smiles - you can tell now that she is feeling better, but this is leading to her being frustrated with just simply being in bed lying down most of the time. I try and hold her and play with her as much as possible, but still trying to get some work done on this snow day. Overall - it has been a good day so far.
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