Posie fell asleep around 7PM last night. I’m not even kidding. She was out! She did work so hard though. The new nurse and tech came in, they were so kind. Every single person we’ve met so far has been super nice.

The tech let us know that the next morning we’d be getting up to check her weight. I don’t think she’s lost any. She was nauseated this morning, gagging and dry heaving. But she got better.

The nurse told me we were both out like a light and giggled. Sure enough, I know she was tired but I’ve been crazy tired too, and this is the most sleep I’ve gotten in ages. I don’t exaggerate when I say her daddy snores so nobody else can sleep. Ha! And Posie usually gets up multiple times a night but didn’t last night, that was very unusual, but I know it’s because she was so tired. I sure welcomed the sleep.

We’ve had a pretty hard day today. After P had her morning bottle, she got weighed, then she cried for another bottle (but wasn’t allowed to have one). She had a meltdown on the floor. When you hear your child say, “If I make it through this day,” because they’re so frustrated, you’re either messing up or doing something right. lol. Geeze, that sounds like something I’ve said before, no doubt she heard it from me. She just turned over and ignored me till time for her meal.

She ate well during her first therapy, and the O.T. met us in the hall to take her to O.T. right after feeding therapy was over, no break in between today. After O.T. I took her down to the playground and when we got there it was closed. That brought on another meltdown. The nurses didn’t know it was closed, most of the staff didn’t either. I knew that the security guard was out there yesterday b/c a mother had complained their child had been stung by a wasp and she found a hornets nest. The guard came and found it and put in a work order to have it removed. They did get it cleared by our second feeding therapy session but it was still closed.

I got to talk to the pschologist, who I met a month ago, and she’s so nice. I saw the dietician yesterday, did I mention that? She was so shocked to see us, noting it’d only been a month, and mentioned it takes a much longer time to get in. I smiled, maybe for one of the first times thankful that I was on God’s timetable and not my own.

The psychologist and speech pathologist are both encouraging, believing that Posie is already showing great promise for success. And I’m believing with them. The psychologist said, “Kendra is so great with kids, she’s got this spirit, and I’m the one that does the scheduling but I didn’t even think to put her with your daughter, it just randomly happened that way. It’s for the best, someone definitely was watching out for us.” I told her I believed that God did that. Here’s the thing, this particular therapist has Posie participating and talking, TALKING, and giggling, and she’s just a different person than any of us know her to be. It most definitely wasn’t a “random” thing or by accident/concidence, it was God.

Posie keeps looking down at her ankle security monitor and it’s making me giggle.

One of Posie’s therapists got her to watch “Frozen” while she ate during one of her meals. They both sang “Do you want build a snowman?” together . . . and it was amazing!!!!!

Posie drank some vanilla Pediasure for the speech pathologist earlier (really)! The Pastor came by and gave her this gift, a sweet baby lamb. Her eyes lit up when she saw it. So many tears today, couldn’t have happened at a better time.

Every body that we’ve talked to keeps telling us the same thing, they’ve never heard of topical zofran. Someone even wrote down the name of our pharmacy. It’s so rare. I’ve told hundreds of people about it over the past two years and I won’t stop. I love that we’re able to educate people that this is a thing, because it has the potential to help so many other children who are struggling! A lot of doctors don’t mind giving your child phenegran in the hospital, or even sending home a small amount for at home use, but nothing long term. Children could be using zofran at home, topically, but their caretakers and medical professionals just don’t know about it. I’m so glad the doctors, nurses, and pharmacists up here know now!!! This is a great place to know about it!

Posie’s OT asked if he could come to our room for our afternoon session b/c he wanted to watch her brush her teeth.

I discovered the same reaction my body gives when I turn my TENS Unit the wrong way (really high, really fast) . . . it gives the same reaction when I turn the volume up to listen in to her therapies . . . those microphones in those rooms are powerful!

Please pray for Kendra and Danielle, the therapist & tech that are working with Posie during the week day. She will get a new therapist during the weekend, who will work 12 hour shifts, but the psychologist said she’s going to have the same therapist work with her on both Saturday and Sunday.

She did great during her second round of O.T. today. The therapist and his student came to our room and she brushed her teeth for them, and then they went back to therapy. She played hard. They came back and told me she liked to spin around and around in circles, but they watched her eyes and after she was done her eyes didn’t move, she was looking straight forward, not dizzy. I wasn’t surprised, she’s never been one to get dizzy. They’re going to work on that (how her body processes different information/the sensory processing) while we’re here. They did some food play and asked her to talk to me about it and she gave me a thumbs down and made a terrible face and whispered (It was applesauce. Yuck!). I thought that was fantastic, too funny!

As soon as her O.T. left she began asking for milk and was pretty upset to find she still had five more hours till she got to drink some. She asked if she could go back outside later and I told her we would if it was open. She said, and I quote, “If it’s not open I will cry. I think I will be upset about it. I might freak out, mom, and I’m just going to go back home and not go to Texas again!”. Oh. MY. STARS!!! Well, that will teach me!! Please, please Lord, let it be open, I thought!

It wasn’t, by the way. And she didn’t freak out, either, as she had promised. Her reward for being a good girl? Well someone came and took the sign off of the door and reopened it . . . so I guess that was a godwink . . . but I allowed her to play after therapy since she didn’t freak out, haha. She played hard, even had a little friend following her around, bless his heart. He didn’t understand why she wouldn’t play, but she’s really shy with kids she doesn’t know. I, on the other hand, was ready and willing to just take him home with me, he was cute as a button.

I met a very kind woman today, her name is Cheyvonne (I may be spelling that incorrectly). and her son got admitted the same time that Posie did. She said they live in Texas and that he’s learning to eat, he’s had a Mickey button for 8-9 years. She told me she had a car up here with her and that if I needed anything at all to just let her know. That was so kind.

Posie cried for a bottle again this evening, was super whiny after playing outside earlier (so I had her take a shower b/c she was ripping her sweaty clothes off), and that caused her to fall asleep. She was NOT a fun little person to wake up and take to evening therapy after having napped for only thirty minutes. It’s such a big day that she’s ready to just go to sleep.

What I learned? Do NOT let her take a shower until after our last therapy, right before bed.

We’re going to try to do some laundry tomorrow sometime, I guess there’s only one laundry room at this facility. I have mixed emotions about tomorrow. I’m not sure if I’m welcoming it, because we’ll have 3 less therapies, since it’s the weekend, so we’ll have more down time to just rest and power up from an exhausting few days trying to get adjusted OR if it’s going to be much harder . . . because without those other three therapies to occupy her time, keeping her entertained in between her feedings, I wonder if she’s going to cry more that she wants her crackers or her milk. Some kids are allowed to have a snack, Posie isn’t one of those kids. I asked if she could even have a graham cracker in lieu of one of the eating therapies she won’t have (when she eats during speech) and they said no, and I’m not allowed to give her any additional milk, no matter how much I may want to. The good news here is I’m not supposed to eat in front of her at any point, so she won’t be tempted with the sight/smell of me eating at any point during the weekend. Please pray for Posie!