Day 17: Pray for Posie

Day 17: Pray for Posie

More morning snuggles!

Last night was quite long . . . little one woke up all night asking for her bottle, she didn’t cry when I told her that she couldn’t have it, she just kept asking for it. This morning was a busy morning for her. Therapies are basically back to back, meaning we don’t have more than 30 minutes in between and by the time the drs, nurses, and techs catch us, we use the restroom, it’s time to go the the next therapy, there’s no time to rest. But today was especially busy because, like some mornings, it was literally back to back. 8:30 was O.T., 9:00 was feeding, 9:30 was O.T., we had enough time to gather our laundry to do later, use the restroom, get some fresh icewater, check the mail, then made it right back down in time for Speech at 10:30 and then therapies continued from there.

She got to eat in a new place today, in the occupational therapy quarters. We’re trying to see how she does eating in different (new) spaces. She got to bring Goldfish back to the room today. She didn’t eat them in feeding b/c she already eats them at home, but they gave them to us for a snack if she chooses to have one.
Slime . . .
Her and Ms. Stefani (her O.T.) made slime together today and she got to bring it back to the room with her to keep and play with

She’s been so excited today about the Home Depot Workshop tomorrow, I know she’s going to have such a great time. She’s really excited. I love seeing her so eager to have fun up here. One of the dieticians did come in this afternoon and wanted to talk to me about her decrease in calorie intake yesterday and ask what caused it and I didn’t know what she was talking about, then it dawned on me that we’re only giving her half of the afternoon bottle so that must be it, and then her and I discussed the afternoon bottle some more. We made the decision to let her keep it thru the weekend, because the weekends sure are hard up here, with no speech or occupational therapies for distraction and to kill the time, it makes it difficult. So I believe starting Monday they will pull the noon bottle and she’ll only get the morning and evening bottles. Down to 2 bottles!! What!?!? And she hasn’t had a feeding tube, which they really thought was a probablitiy when we came up here, because of her medical isuses and history. Oh. My. Heart!!! God is so good!

She was really getting into the Pirate Fairy Rescue movie. I’m not sure if that is what it’s called, something like that, it has Tinkerbell in it. I may have to see about getting it for her when we come back home. She could’ve sat there and watched the whole thing through.
So many times a day . . . my hop scotch girl!

We got out of feeding therapy around 3:30, started a load of laundry and then headed outside. That didn’t last long. In fact, it was less than 10 minutes. Maybe only 5. She commented on how hot it was and wanted to come in, so we did. She’s been tired and a bit “extra” fussy today. It is hot out though, the temp is only supposed to be 88 today but it feels much hotter than that and the sun is beating right on you. I was fine with coming in, I’m not supposed to be out there too long and I don’t have sunscreen here, I’m not sure why I didn’t think to pack any. All in all, she’s doing great, but the days are getting longer and things are getting harder. Well she’s doing really good with feeding, though there’s been some pushback with mom, that is part of everything to be expected, but it’s hard b/c the meltdowns are becoming more and more. Hard enough that I’ve considered when we get back home if I’m just going to need to leave for the weekend and spend a weekend by myself, mercy! We have a pretty crummy meltdown every couple of hours. And geeze, I hurt something fierce. I couldn’t be more ready to come home and rest in my own bed. The only thing I don’t miss about home is the smell of the pukey carpet that we left behind, I’m not looking forward to going home and having to smell that again. No amount of carpet cleaning has removed that.

She asked to play on her tablet, laid down and 3 minutes later was asleep. Hahaha!
Always my best helper with laundry
It was short lived fun, but it was fun

Posie was really excited to get some mail today. I ordered her some new underwear . . . this is a big thing. She needed a bigger (age appropriate size) FINALLY, I’m so excited. As soon as they arrived I threw her old ones away. Her SLP recorded a session of speech therapy for us today and tomorrow she will be recording a session of feeding therapy for us, on a USB drive, for us to take home and reference. We’ll share it with her dad, sister, and grandparents and our feeding therapist if she wants to see it. The next several days will be challenging. The weekend is upon us, she’s going through a big change with mom being in the room and feeding her now, we’re about to remove another bottle, and she won’t get to facetime dad and sister for a few days. Please pray for Posie!