A Great Day!

This has been a day with lots of simple improvements!  Sylva was able to successfully maintain her Peep level at an 11.  This has been after 3 days of abandoned attempts.  What an improvement!  She has also come down quite a bit on her level of nitric oxide, which I understand will be the next thing to focus on as they continue weaning her from the ventilator.

She also had some fun visits with Amanda at the PICU and Steve & Bri and Daniel and Cyndi & Anthony via skype. 

Jared made her a 'deal' that if she agreed not to pull out her tube he'd make her some purple 'silly puddy' - This was a clever attempt on his part to dissuade her from a growing desire to become tube-free and cordless again.  Earlier she wanted to see herself in the mirror and after just a quick assessment she decided to remove her feeding tube - she was awfully quick but luckily we were a bit quicker.  It's not that easy to replace because it goes much further than her stomach.  At any rate we can now reasonable dismiss the idea of brain damage as we witness her showing more and more of her personality each day and in this case it is quite fitting that she'd decide to take care of this matter all by herself ;-)

Sylva has been trying to communicate in any way she can and with her vocal cords out of commission she attempts to compensate by enunciating and exaggerating each word.  Unfortunately we're not proficient at reading lips and since her hands are carefully bound to keep them from handling her tubes signing is also ineffective!  Her frustration is mounting and so she has added facial expressions to the mix and we are beginning to see some familiar expressions. 

So how do you entertain a little girl who wants to color but her hands have been immobilized? We thought we would try feet, and Sylva was very enthused for about a moment.  Oh well, at least we tried!