I kid you not. The child got her second wind last night after we came back to her room. She would NOT go to sleep. Geeze.

On another note, I LOVED our nurse and tech last night, oh my word, oh my word, oh my word! Look, everyone has pretty much been great so far, BUT seriously. Last night’s tech was amazing. We did have a hiccup about some medication, but it’s resolved.

I want some chocolate. That’s just a random thought, but it sounds pretty great right now. Hahaha! So basically for the past 5 days I’ve eaten jerky for my meals, that a friend sent with me here, b/c it’s tricky to eat with her. I’m asked not to eat in front of her. I’m always with her (except the two times she goes to OT Mon-Fri, she doesn’t have OT on Sat & Sun). So I’ve eaten jerky after she’s fallen asleep at night and once during OT. The coordinator downstairs told me this morning that if I need to get a nurse to watch her for a bit so I can step out for a short while, I can do that. But I don’t feel that’s necessary. She’s kind of struggling at the moment, and my guilt is really weighing on me. Besides, it’s not like I’m going to waste away. I’ll grab a meal tray next week (the cafeteria is closed on the weekend to purchase food other than vending machine). But really the honeymoon is over, and they weren’t kidding about the first weekend being the hardest. From 7-12:30 she cried and whined and asked over and over and over if she could have her milk. We had a lot of meltdowns. The coordinator told me if I needed to step away I could b/c she was a handful. I didn’t. I’ve dealt with plenty of hard days with her and I trust the Lord will give me the grace I need to sustain us today . . . and that He will show me to the door to ask for help if/when the time comes that I need it.

It’s so hard. The fewer therapies makes the day slower and her 3rd meal/feeding is 30 minutes later on the weekend (since there isn’t an extra tech) so she has to wait even longer for that bottle.

Her dad is sending us a care package w/one of her lovey’s from home, even though she brought a couple, and a picture book, and a few other things. Most importantly he’s sending us her meds. He thought he couldn’t send them b/c he read something online where it was illegal (but that’s only controlled drugs) so he talked to the USPS and pharmacy and got them filled and is getting them mailed today. Hopefully they’ll come soon and the hospital can start giving her meds to her. She needs them.

We made it down to start a load of laundry this morning before our first therapy session began and there was nobody else in there doing laundry, all the washers and dryers were free (there are 3 washers/3 dryers). I was so excited!!!! Lil’ miss helped me do some laundry. Winning!! I love that she wanted to help me, then again, she always is the first to help me at home. She’s my happy helper!

So she’s still not warming up much to people here (though she likes Kendra, her speech pathologist, and Danielle the tech for the second part of the day), but Senora, our nurse tech, has started to win her over and has gotten two hugs from her today!

We received our bottle brush last night that our neighbor overnighted us from Amazon, which was a blessing, b/c I’d been just rinsing them out with hot water. Now I can was them with Palmolive (and correctly), yes, little things get me excited!

Posie has a few little boys that like to follow her around the playground outside every time we go, but she wants nothing to do with all three of them. lol. We may have a special visitor tomorrow, so that’s exciting!!

My oldest went to the orthopedic dr yesterday, she’s had some ankle pain since spraining her ankle a couple months ago, and we thought we should get her checked out before starting a summer camp for cross country. Her pediatrician did xrays and decided she wanted her to see an orthopedic dr, who said it was possible there was small fracture but wasn’t seeing one, rather he felt that it’s likely a growth plate sprain and wants her to be in a boot for at least one month to heal. (She fell of a curb, if you were wondering, yep, graceful like her mama!)

The therapist got her to drink some Vanilla Pediasure w/fiber again today. WOW! That’s all I have to say. I’m not saying she loved it but she drank it, and that’s not something she ever did for me, for any of us. Of course, they did tell me, that means when it’s my turn to start going in there with her and feeding her, she’s going to be pushing back and trying to get out of it. Oh yeah, did I mention that? The therapy sessions are on camera and there’s a neuropsychologist who oversees therapy, and before we get to go home I have to switch places with the therapist and they’re going to watch me on the other side of the glass. I’m not sure how I feel about that. It’s kind of intimidating, especially knowing that 1) I already know her and how she acts and 2) everyone already told me she’s going to fight against doing for me what she’s done for them. Big prayers for that to go smoothly.

Nicole is here, from the Plano hospital, so it’s great to see her! She was there for our 5 hour evaluation and kind of talked/walked us through everything. The psychologist on the weekend is really nice, too, her name is Meagan and she made Posie a chart w/velcro to show her (as a visual aid) what to expect at each time so she knew what was coming, because it’s so hard for her to wait for her bottles. She’s bringing more pics to add to it on Monday.

Posie did great at her 3 PM feeding therapy and ate some spaghetti w/marinara sauce and strawberries. She drank some more vanilla pediasure, too. But as we walked down the hallway, leaving to head to the elevators from feeding therapy, she vomited it all up. That was such a bummer. The feeding tech came and helped while I got her cleaned up and we went right upstairs to change and gets some zofran.

After we got cleaned up we went to the playroom (for the first time) and she was pretty excited. She played with a few toys but I’m pretty sure that the big doll house was her favorite. She was pretty tickled that there were owls all over the walls, as owls are her Zozo’s favorite thing.

Next we went outside and played just a little bit longer, we stayed out maybe 20 minutes and came back in, it got hot in a hurry (even though I heard it had been raining quite a bit back home, it’s been pretty hot here).

She’s been giving her new friend, Senora, a hug every time she sees her. I’ll take that as a win, for sure!

Tonight it’s pouring here and we’re under a severe thunderstorm warning. We have the same night nurse and tech from last night and I’m SO excited about that, b/c I love our tech. so. stinking.much.

I’m looking forward to a peaceful night, a restful one. I have a lot of things I need to get done but for tonight I’m just going to relax. Posie did really well at her final feeding this evening and didn’t puke anymore, they didn’t push volume as much this time I don’t think. She did really, really good. She’s very tired and not quiet about telling me about how tired she is. There will be a lot going on next week. Please pray for Posie!