Not quite done...

So, another week goes by, another visit to the doctor for Maddie, and another time we hear him say something along the lines as,  "She looks great and is tolerating everything well, but I really think we can distract a little further."  Ultimately, he said it was up to us if we wanted to stop, but he doesn't see any harm in continuing the distraction for one more week.  We are only turning the bottom screws and have upped the turns from once per day to two turns in the morning and one turn at night.  They are definitely getting harder to turn and therefore I leave most of the turning to Ian and his muscles.  So the plan is, we will keep distracting as long as we feel comfortable and then we will follow up again with the doctor next Wednesday.  I should know better than to expect anything normal or average from Maddie!  As soon as I heard the Dr. say that  28 days is average for distracting I should have just doubled that time immediately, then I wouldn't be so anxious to be done!  In trach news, I am happy to say that we have been capping Maddie's trach the last couple of days and she is doing great.  (This just means that no air is coming out the trach and she is breathing completely on her own).  I even left her capped for about 20 mins during nap earlier this week and can I tell you, it was the most peaceful sleep I have seen her have in years!  So, while 'no snoring' is not an end all be all, it was definitely a good test and leaves us hopeful that this distraction is helping with her apnea. 

Shhh...do you hear that....sleeping as peaceful as a baby!!