Today has been a day for the books . . . it’s been the kind of day that I don’t want to deal with . . . it’s been the kind of day that I actually expected us to have all along. It started last night with my little one not going to sleep until 10pm. That was fun!

Today we had a bit of a challenging session in feeding therapy and then we had a really difficult time during the “in between time” between breakfast and lunch. The techs fed her lunch and I came back to our room, it’s the only meal I’ve missed with her the entire time I’ve been here. After lunch she was in the room for just a short time, had her (final) afternoon bottle and then the Child Life Specialist came and got her and took her outside to play and then to the playroom where they colored.

My friend Julie showed up and that was such a blessing to hug her neck! And she brought me a couple of avocados!!! WooHoo!! It will be nice to have something fresh to eat for supper tonight! She left at the same time that Posie needed to go down for her afternoon “snack” feeding therapy. That was so much fun . . . <<<insert sarcasm here>>>. It took 10 minutes just for her to eat one vanilla wafer. She basically gummed on it, didn’t take real bites most of the time, just barely nibbled. I had to queue her over and over again and eventually turn the movie off a couple of times and take the stickers from her.

She was even “hangry” when we left b/c she basically ate two wafers and one grape by the time we got out of there. But she just wouldn’t eat. She wouldn’t look at me as we walked down the hallway, wouldn’t even walk the same pace as me. We went to the cafeteria b/c I decided to get a Diet Dp (that I’ll regret in the morning) and I sat my stuff on a table so she sat at a different table than me. I asked her to sit down at the same table as me and she went to an entirely different table, again. Going upstairs she laid on the sofa bed and wouldn’t look at me. Eventually the Child Life Specialist came in and talked to her a bit and even managed to get her to speak but not really smile or anything. She is in a mood! The specialist actually said in about 70% of cases they do this where they keep going up and everything is great and then this happens.

I shouldn’t be disappointed or frustrated because this is essentially what we (the healthcare team & myself) need/want to happen so we will know how to address her behavior when I take her home. There are a lot of issues that play into her feeding problems: developmental delay, GI issues, neuro, SPD/oral aversion, AND BEHAVIOR. So we need to address it from every angle before we go home so I’m equipped to handle everything that comes at us, so she has the best chance at success. I have a feeling this is going to be a long week. Please pray for Posie!