My hopes for today were that it would be a smoother day. I knew we were going to stay busy this morning and my hope was that she would be distracted and not as upset as yesterday. A sweet friend of mine that I hadn’t seen in over a decade told me she was coming to visit us at 10:30 since we don’t have our speech therapy on the weekend and I was so excited to see my friend!

It is every bit a hospital here but doesn’t feel so much like it. My heart is so full of love for these people that we’ve just met, the nurses, doctors, techs and other families. I know I keep saying that I love them, but I just love them. I love watching the children interact (or try to) with each other and love that Posie is constantly asking questions, b/c she really wants to know “why” (for the child with bandages all over his leg, or the girls with the tracheas, or the children badly burned & disfigured, the wheelchairs, and the other children with feeding tubes & gtubes). It’s becoming a great opportunity to educate her.

Truthfully from what I’ve heard so far, it seems like this is somewhere we maybe should’ve tried to have gotten her into over a year or two ago. But that’s passed and we’re focusing on now. And everything about now feels like God’s perfect timing. They’re working on strengthening her core and working on the oral dysphasia, in addition to many other aspects. Everyone has been so kind, staff and other families, and it just feels 100% “right”. But it’s hard. I knew it would be, but man, it’s hard. This morning Posie only drank 1 oz of her milk at 5 am. She’s used to 8oz every 4hrs, so this is all so hard for her.

Morning therapy went well, she couldn’t wait to get down there. The nurse who listened to her this morning told her she could hear her tummy growling before the stethoscope even touched her body. She ate and 15minutes after we got back to our room she was in tears, asking if it was time to go back downstairs to eat. Let me clear something up. They do not let her go in therapy for 30 minutes at a time letting her eat the whole time. She eats what they give her, when they give it to her, and whatever size/amount they give her. There are pauses to wipe food off her mouth, put stickers on the paper, talk, and pause the movie until she finishes chewing her bite. So while she eats good, she’s not eating a ton. Plus, like I said before, she’s used to filling up on her Pediasure.

Oh.My.Soul. This morning they were watching the movie Moana and some scene came on, and while I wasn’t turned to where I could see the movie, I get to watch them and hear them when they’re in there and she said, “That’s not real, God is real”. It got quiet before they said, “Oh yeah?!”, and then moved on with the session. Golly, talk about tears in mamas eyes.

My friend showed up!! My heart is overwhelmed with emotion! I could hug her neck all day! Is it just crazy how you can go 10 years without seeing someone and when you see them again it feels like it hasn’t actually been that long and you just pick right back up again. Geeze, I’ve missed her so . . . I wish we lived just down the street from one another. She brought us a coffee and we visited for 2, T-W-O, hours, and it was fantastic!!! I think she may even come back soon. Also when we got back up in our room from feeding therapy I noticed she’d actually left me a bag with a few sweet treats. Oh, my word. Thank you, lady!! Haha, I didn’t need it, but I enjoyed it! They came from 85 bakery. That’s not an affiliate link, I’m just letting y’all check it out! Since I’m not supposed to eat in front of her, I ate one of the desserts in her room while she went pee in her bathroom, haha. I’ll eat more after she falls asleep.

So, funny story! When Posie got her security bracelet put on her foot the nurses were a bit confused b/c it doesn’t flash. I mean, every time they see her they’ll mention that it’s not turned on, but when they first got it (it’s new) and placed it on her, it never flashed. It was defective. But when they hook her up to the device to activate/deactivate it, it shows that it’s registering correctly (being activated back or being deactivated). I’ve been kind of leary about it working, but the nurses/techs that have handled it seemed confident, but it’s been fine b/c I know she’s going to pretty much be in my sight the whole time. Well, we know for sure that it does work! When my friend, Jaret, showed up, I was so excited to see her that I walked up to her and gave her a hug. And she was already inside the building, but Posie was hand-in-hand with me as I walked up to her and since we got near an exit door without deactivating her bracelet, it set the hospital alarms off. The receptionist told me I needed to go upstairs and staff came running down the hall to the front, someone else met me right in front of the elevator and rode up to the floor with us and there were 3 nurses at the desk and they deactivated it, then they all laughed and said, “Well, we know that it DOES work!” It was funny, but poor P, she was so alarmed and it scared her b/c it was so loud, she held her hands over her ears. So hey, I’m glad it works, lol.

We had our afternoon meal and came back upstairs and played in the playroom for about 40 minutes then I realized that I FORGOT to have her drink her 1 PM bottle and told her we needed to get to her room b/c she was about to miss it altogether. She guzzled it down pretty quickly, not as fast as usual (I think that’s good, maybe?) and then she laid down to rest till our 3 PM meal, then we went outside to play.

“Snack” feeding therapy at 3 was a little hard. She was spitting out some food and then afterwards nearly threw up. We went outside and played this evening and enjoyed some fresh air.

We headed downstairs much earlier than normal b/c she kept asking over and over and over again if we could go eat. I had her stop with me in the cafeteria first at the vending machines to get me something to eat for later. This is the first time we have done that since we’ve been here. I got a sandwich, it’s my 1st real meal since I’ve been here (I’ve basically just eaten beef jerky and crackers) and I know my body will thank me later. I was kind of leary about a vending machine sandwich but knew I needed something different b/c I’m still in a lupus flare. We grabbed my food and headed to therapy. She did really well, she got a little anxious, but she did what she was asked.

When we got upstairs they brought her meds to me so I could give her bottle to her and she drank 7oz (out of the 8) and asked to have her tablet. She didn’t want to shower . . . I’ve made her shower every day that we’ve been here but for today I’m going to let her go just one day without a shower . . . because when she goes to sleep, I think I’d like to go in there and take a HOT shower all by myself!!! Hahahaha! We’ll see how that goes, I may be too tired to do that. I’m reconsidering my choices already b/c normally she’d be getting a little sleepy and she hasn’t so far, I think the shower really helps her relax. I very carefully ate my sandwich wrap on the couch, hidden by the blankets, so she couldn’t see me. It was good, I might try to grab another one next weekend. We got our schedule for tomorrow, it’s going to be busy. I wouldn’t mind a huge hug tonight. Whoever you are, I love you, and am praying for you (yes, I pray for those who stumble across this blog). Please pray for Posie.