I'm getting used to seeing my boy without tubes and wires. With the adjusted feed schedule, he is only connected to the feed pump for 3 1/2 hour periods during the day (between 8 am and 7 pm). With his oxygen sats staying in the upper 70s and lower 80s, we only put the canula in at night. He is becoming much more mobile these days. :)
On top of that, God continues to provide for our needs, in advance. I can't tell you that we haven't spent more personal funds through the past 4 or 5 months - because I know we have. We have splurged on some items to make things easier around the house. (I'm thinking in particular about our new living room bed, but there have been other smaller things) And even for the big purchase of a second bed for us, God provided an insurance settlement for an accident in our car that covered all I needed to fix the car and enough for the bed. We spent extra money on gas and food for a few months, but much of that was covered by the generosity of friends and family. And this week, we get a card out of the blue from the Falconer Wrestling Boosters because they chose our family to be the beneficiaries of a fundraiser they had during a wrestling tournament. (http://www.post-journal.com/sports/local-sports/2017/01/top-seeds-all-reach-semifinals-at-patrick-j-morales-tournament/) I suppose it helped that the tournament was in the paper the same day an article on Robbie and Timmy was on the front page of the local paper.
Another blessing: Timmy has slept better the past 2 or 3 nights. We have reduced the rate of feeds at night, and are pretty sure the food was just going in too fast and agitating him. We cut him back by 5 ml an hour (that is 1 ounce less over 6 hours), but he has been sleeping from 10 at night until 5 in the morning. It helps, I guess, that he doesn't wake up to eat in the middle of the night.
And, as you may have noticed from the pictures, he has been smiling more as of late. Looking around more with a contented look on his face. And 'talking.' It isn't really talking, but you can tell he is 'saying' something. We'll take it. We are blessed. And we thank God for the many blessings He has given us.