My little one woke often thru the night but it wasn’t unbearable. Then at 5:40 this morning an alarm went off and a Code Blue came across the speaker system. It lasted for 15 minutes before being cleared. A couple hours later there was another Code Blue for the same room, so again we just sat here and prayed for the little friend down the hall. At 6 we went down and got some ice water and ran into JoJo’s grandma. What a blessing! JoJo only has one more day left here!!! He is going home today. His family has had a long road in the hospital, his grandma has seen three babies up here. Her daughter who is 21, experienced the tragedy of all 3 of her babies being in a car fire. Their ages 4yr, 3yr, and 13months old. The 4 year old got to go home, the 13 month old went to Heaven, and the 3 year old is still her. He is ray of sunshine and sweet as pie, I’ve enjoyed the little bit of time I’ve had with him here the last three weeks. I’m overjoyed for their good news, to go home!

Posie was nauseated this morning and spent part of her morning hugging her puke potty but she was good to go to therapy this morning. She did really well in OT and Feeding. We got to have 15 minutes in our room for her to play before I took her back down to OT and then right as OT ended her SLP showed up to get her for Speech. She got to hang out in Speech w/some other little ones b/c the SLP is trying to help her get more social. I came back to the room where one of the psychologists, Meagan, met me and stayed for about an hour. She gave me some resources and a book to go over. I think I may purchase a copy for us to have at home.

Ms. Chevyonne and her son Jayden got to go home. I knew it would be today I just thought I’d get a chance to talk to her before she left, I was going to go see her after lunch. But after lunch she was gone and the room had already been cleaned. It was so empty, my heart hurt to not see little Jayden there or to smell the familiar smell . . . if you haven’t been here, you wouldn’t get it. I asked her one day in the elevator after nearly 2 weeks had passed, “Okay, I have to know, what do y’all use in the shower or what lotion do you have on?!” She busted out laughing and told me that everyone had been asking her that. LOL She told me what soap and lotion it was and we talked a few minutes before we scurried off in different directions for the kids therapies. I will miss her, she’s the kindest woman.

Posie was so excited to go outside to play for a little bit after lunch. She only stayed outside for 20 minutes and then she was sweaty and ready to come in. Over the last three weeks here it’s been getting hotter and hotter with each passing day. It’s 94degrees but feels much hotter outside. My little one was so excited when a package came in the mail, one that she didn’t know was coming, from Walmart. I had ordered some peanuts to have here during the day and also ordered her some JoJo Siwa lip gloss and a Rapunzel (Tangled) doll. She was so excited and I’m glad. She’s played with that one doll for hours (several hours) and I’m hoping she’ll be more excited to use lip gloss, she’s been dealing with chapped lipped or drying for some reason and her lips have been peeling. She’s been tearing the skin off when mom isn’t around. Eck! The dietician came up to talk to me right before lunch and decided we would keep her off of the 1 pm bottle for good. Today was no fun, there was a lot of crying and whining for it and a snack. Hopefully, tomorrow will go better. Also tomorrow we’ll be eating in the cafeteria. By we, I mean “she”, and we’re trying to get things as “similar” as to what they’ll be like when we go home and since she’s not going to have an iPad or TV right in front of her (like she does in therapy) they have to get her on the right track to what it will be like going home. Since she’s already been a little cherub this week, I’m not looking forward to any changes this week. We do have our next appt’s set up for our neurologist back home. We will be seeing a new neuro since ours is moving, so we’ll see them the first week of September and go back two weeks later for her GI and dietician appointments. We’re so much closer to coming home. Yay! Please pray for Posie!

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