The power of positive thinking right?  Boy do I need it.  I am beat.  You would think that the last week might have at least afforded me some extra sleep since we aren't waking up in the middle of the night to change feeds every three hours and do Accu Checks but I actually think the combo of waking up at 1:30 am to call the hospital every night (this has been my routine since Finley was first admitted to the hospital) and waking up at 4 am so I can get to the hospital by 7 am - well that just has me out of gas!!  Hopefully today is the good day I think it will be and I will be able to bring Finley home!  Isn't there something out there that says if you make it you mantra it will come true?  Today's going to be a good day.  Today's going to be a good day.  Today's going to be a good day....


It was wonderful seeing my Princess yesterday.  After several days of being pig tail free because of the stinky BIPAP mask (and me forgetting to bring her tiny rubber bands) the piggies are back.  Finley on the other hand wasn't her happy-go-lucky self.  The amoxicillin that they started on Tuesday was doing a number on her little tummy.  When I first got to the hospital - she was pretty smiley (relative to how she'd been the days prior) but her oxygen saturations were a little lower than what we normally see with Finley - and that had me concerned.  As a brief point of reference - because Finley is a heart patient - she wears an oxygen sensor when she is at the hospital and it measures the amount oxygen in her blood (oxygen saturation).  Having watched those monitors now for so many months on end over the last 8 (almost 9 months) I have become pretty familiar with what is Finley's "norm" and you can tell a lot from those numbers.  Usually whenever Finley's are low, she's got something going on.  Needless to say Finley just seemed generally uncomfortable - didn't want to be held, tossing and turning in bed, etc. and so I was really starting to get worried until I put two and two together and after I changed like the third poopy diaper and had been hearing her pass gas all day - we sort of figured out that the princess's tummy just wasn't feeling good.  She couldn't get comfy all day so she didn't nap and was subsequently cranky.  She finally fell asleep around 4:15 pm and when I called the hospital before I went to bed and in the middle of the night - she was still sleeping!! And her oxygen saturations were back up to 90 so I felt better!

Otherwise not a whole lot of new news - I spoke with the immunology doctor who said overall Finley's lab tests didn't reveal a lot.  She had a low lymphocyte count which wouldn't be unusual for a child fighting an infection. He'd looked back to some previous labs and noted that she'd had some really good lymphocyte counts before - so he doesn't think its a big deal.  But, because of her CHARGE syndrome and the occasional issues with immune problems - which he linked to another syndrome called DeGeorges.  Because CHARGE and DeGeorges have a lot of overlapping characteristics if immune problems present themselves in kids with CHARGE (even when the actual q22 deletion in DeGeorges has been ruled out like it has with Finley) they call it partial DeGeorges.  Don't ask me why - I am clearly not a doctor. In any event - no big deal at the moment - he just advised us not to let her get any live vaccines until he can retest her - which is somewhat comical since her vaccines are up to date and we've not had any issues yet.  She isn't due for more vaccines though until she turns one and we will bring her for her follow up before her first birthday.

After a brutal commute from the hospital to pick Nate up at daycare (Mike was stuck in training) it was so good to see Nate and find out he had a good day at school - he even 'ticipated'.  Which to us means he participated in group time which we've had some issues with of late - Nate tends to like to do his own thing when he isn't interested. We've been putting a lot of emphasis on this with him at home and he has a chart that he gets to put a star on if he 'ticipates'.  Anyway, Nate was in a great mood and was in a cuddling mood so he and I had a nice evening together until I apparently dosed off on him and Mike came home.  Oops.

Anyway, today's picture of the day still cracks me up every time I look at it.  When Finley sits in her bouncy chair in the kitchen - occasionally Nate will run around and put his tush in her face and wag it back and forth and say "shake your buddha" (instead of booty).  Notice how Nate's even put his hand on the fridge to brace himself so he can really get his butt in her face.  Its a classic.

Repeat after me. Today's going to be a good day.  Today's going to be a good day.  Today's going to be a good day.