It’s a new day!!! I was very excited about this! Yesterday evening was so much fun during her evening feeding therapy (except it wasn’t) and it was basically a game. Then we only slept a couple of hours (her, not me, I don’t think I fared as well), and we were up for good by 4am, as I listened to her cry for her bottle for 2.5hours. She got up and played with her Rapunzel doll for a long time before they came in to weigh her.
She actually may look a little bit like me
Posie & “Little Baby Precious Unicorn”
Coloring while Mama was at a meeting
This is the coolest doctor. We love her. This afternoon she came in and sat on the floor with Posie and braided Rapunzel’s hair with Posie.
She had her morning weigh-in and she’s gained weight again. So she was gaining too much, then she stopped gaining, then dropped and is now gaining again and the dietician said, “the perfect amount”! WooHoo! She did pretty good in her therapies and hasn’t pushed back (behavioral wise) in them today. We had breakfast in the cafeteria (her, not me) and the SLP and another therapist sat across the room at a different table and observed us as she ate. Tomorrow we will be going to Sonic to eat breakfast just to get her off campus.
It was hot, but it was fun.
She’s getting stronger everyday.
This girl loves rock climbing as much as her sister does!
Posie & Aura
She’s got stars in her eyes for Ms. Aura
We had two new therapists today for O.T. since her therapist was out, we did laundry, and she got to play with her bestie, Ms. Aura. Later she stayed in the playroom with some volunteers while mama went to our afternoon “Huddle” meeting and then we went outside to play. I’m telling you it’s only 95, but geeze it’s hot. We had a pretty awful meltdown after that. She cried so hard and acted so awful (for so long) that the kids here who are typically acting out on our ward, or super loud, they all got quiet and didn’t make another noise. I’m so ready for us to have her final feeding therapy at 6 pm, take showers, meds, and have her evening bottle so we can go to bed. I’m super bummed! Also, I found out today that Dr. Brown retired!! This is the 5th one of Posie’s specialists to retire in 3 years (he’s her eye specialist). I didn’t need to hear anything like that right now. Tomorrow Posie goes to have time with Child Life and then I have a “Prep Class” where I’ll be going to the cafeteria (or kitchen) to learn from the cooks here how they’ve been preparing the foods that she’s been eating. My little one is struggling right now. Struggling to stay awake and struggling to keep it together. Please pray for Posie!
