One last wedding post.

The next day we went back to finish clean up. Bricen had a good time running around until he fell and scraped his knee. It was incredibly hot and muggy even though we had great weather for the actual wedding. Once he fell and scraped his knee it was to the air conditioned car to watch some movies.




The first scraped knee.

This is my favorite picture of them!

Grandma Aunt Karen and Chelsi

Straggler pictures

We haven't done as much swimming but the little we have was a good time!

Everyone brushes their teeth like this, right?

It amazes me what this kid catches on to just by watching and it's things I don't even realize he is watching.



So we have started cutting feeds back even more for feeding trial days. It has been beyond difficult on both mommy and Bricen. I venture to say harder than some of our NICU days. But certainly not harder than those stinkin' sleep studies! He usually gets five tube feeds a day. On our trial days we are cutting down to two and only doing this for two days. I give a tube feed at noon and then before bed so he gets a full belly before bed. We've done that once so far. We start another tomorrow. Last time we did it he was obviously hungry and super fussy and clingy. As he has been doing, he wanted everything I offered. He puts it in his mouth and then either spits it out or gags as he tries to swallow it. This usually leads us to dry heaving. It's pitiful. What was more pitiful was when he was fussy, I offered a apple piece, he got excited and took a bite, and then after it being in his mouth for a bit he got fussy again. It was obvious he wanted to swallow it but was scared because he just started crying again. To say it broke my heart would be an understatement. Any prayers are always appreciated. Our most recent visit w/Riley therapy was kind of crappy too.

First steps comes to the house for an hr once a week. (Along w/speech for an hr once a week.) But Riley ultimately has the final say. She was saying it's a crucial time, trying to get him eating by mouth before winter and he catches everything there is to catch and that keeps us from doing trials. Also need to get him squared away so we can potty train him. It's harder to potty train a baby getting tube feeds while he is sleeping. We discussed my hesitation w/cutting tube feeds down that much. Also discussed the fact that I'm a nurse and it might actually work against me as far as worrying about more when we cut those feeds down. For example, hydration, sugar levels, etc etc. She mentioned that she doubted we could get insurance to pay for it but we could put him in the hospital for a week with no tube feeds and see if he would eat by mouth. In all honesty, I wasn't sure if I wanted to punch her in the face or laugh hysterically at this idea.