OCH week 4

We are cruising along here at OCH. This is Preston's 4th week. It looks like we will be staying through next week - which is a good thing!! He had some more vomiting issues (not sure if you non-face booker knew about the vomiting, but it started got a littlle better and then at the end of the week and over the weekend it got REALLY bad due to his delayed stomach emptying. It seems to be resolved for the moment by uping one of his meds and by limiting the volume of his meals and taking out his morning snack.

We (mostly me, or my mom, or randy or randy's mom) are now staying all day here and I am now doing the feedings. So far so good! It has been a lot easier this time, since their way of doing things is what we have been doing at home for over a year now. The days are long, but he seems so much happier now that one of us is with him all day. They are still working on his chewing in speech therapy and getting us set up for outpatient therapy after he is discharged, as well as a home plan. If your are bored - we love visitors, between the hours of 3 -5 (that is honestly the worst, slowest part of the day, and 5:30 to 8 (I'm mostly here during the week and Randy does weekends - but we are both up here at night so the boys can play together).

Preston is really being a trouper and has been babbling a lot today - which just melts your heart!! He was sitting on the playground this evening with a cup and a stick and putting the stick in his mouth - which is something he never does. And I thought I heard him saying something and I got down next to him and he was saying "good bites." That is the verbal reward he is given after he "takes his bite." He was taking the stick out of the cup and basically poking it in his mouth and doing it over and over and saying "good bites" and sometimes clapping for himself. It was the most precious thing!! It made me cry. He was just poking the stick in his mouth, but it was great to see him imitating his meal protocols and I really feel like he WANTS to learn how to chew things. So I think desire to learn to chew could be half the battle in my mind!

This was taken on Mother's Day - how can you not love that sweet smile!!

Even though we had first hoped (months ago before being given realistic expectations) to be stopping by McDonald's on our way out of here it is pretty clear we won't be leaving with him even eating anything disolvable. But he is very slowly overcoming his fears and aversions to things in his mouth, so we are feeling glimmers of hope that with a lot of hard work Preston will one day be eating a cheeseburger. Thanks again for the prayers, support and encouragement! They all mean so much to us!!