This morning I heard the sweetest voice say, “Mommy, I don’t feel good because Zoey isn’t with us and I don’t feel good without her and I just want to hug her. Always.” My heart melted. She snuggled up a little closer to me and we waited for the tech to finish vitals. It made me that much more thankful to think that we’ve completed 1/4 of our stay (and it’s not some wishful thinking, at her progress so far, we won’t be staying past the planned month of care).

We had a much better night last night. She did get all of her meds at the same time as I’d requested and they even brought her Erythromycin in earlier to give by mouth. By the time the night nurse made her rounds Posie had just fallen asleep.

She woke up at 12 AM saying she was thirsty, I offered water, she accepted a drink and fell back asleep. She woke up at 1 AM asking for milk and I explained she would get some in the morning when the nurse brought it in and to not ask for anymore (that broke my heart, I felt like a meanie, but it needed to be done for her benefit) and it helped. She was quiet till 4 and asked if it was morning yet, I said it wasn’t. Then at 5:40 she started crying b/c she was so hungry and the nurse went to bring her bottle to her early. She drank so fast b/c she was so hungry that she ended up puking it right back up. The nurse brought her zofran for good measure since we were going to start therapy at 8AM, and she rested well. I got some good morning snuggles out of the ordeal and I’m not mad about it.

She did great at OT and great at feeding therapy. She told me she likes her “white” milk (Vanilla Pediasure w/Fiber) so we’re going to try to start giving her some of that at home as well. She did puke at feeding therapy but they continued w/eating and then we went upstairs to change. She fell asleep and wasn’t a very fun person to wake up for speech therapy, she had a 15 minute meltdown and we were late.

We had a visitor after speech therapy waiting to see us, the Pastor. We talked for half an hour and then Posie joined us for prayer before he left. He told us he’d come back next week and he’d sit down and explain the story behind the Lamb lovey he gave her if that was okay with her. She stayed quiet but I let him (and her) know that we would be looking forward to it (just so she would know to expect to see him again). Geeze, she’s so shy. He was telling us that he’s been here for 11 years and seen people come from California and Massachusettes, too. And he was telling me that there’s less than a dozen of these programs in the US just like this. I think it’s less than half that but I can’t remember the number. Wow, I’m so grateful that we’re here.

Posie was over the moon excited today, she received two packages in the mail. We got to play a game from one of them and she was pretty happy about that. We’ll color and play a card game tomorrow. There wasn’t enough time today since they arrived at the end of the day to our room.

There was a “Family Dinner” tonight in the cafeteria from 5:30-6:30. They served pork chops, mashed potatoes, veggies, and dessert, plus a drink. It smelled really good and it was free!!! I almost walked myself down there for some, haha!

I got productive today and made some phone calls and now have my surgery date scheduled. Lord, give me rest. I am “counting on” us going home at that 30 day time because my surgery is scheduled for one week later. I heard it rained like crazy back home today, meanwhile, it was 100 degrees here and we felt every bit of it while we went outside to play. Okay it was actually closer to 90 but felt 100.

Posie’s feeding therapy was at 5:30 and ended at 6. Then we went to the cafeteria and I had her play on my phone at a table while I went and got a Diet Pepsi (that I’ll regret later) and a sandwich from the vending machine (that I’ll also probably regret later) and hid in my purse so I could eat when she fell asleep, and we headed upstairs. She was so very excited to take a shower and read a book so she could snuggle up in bed. She took her medicine and drank her bottle (laced w/the meds from the RN) and she watched her tablet for a little bit then fell asleep.

Side note: I’m so happy about this! I just got a text and our new fridge is installed! YAY! So basically our fridge broke two weeks ago and we lost our food. But hey, no sweat, right? This has happened before. In fact, the same fridge broke 3x in the last year (12months, no joke) and we had to get it fixed. This 3rd time I told him absolutely not, we wouldn’t pay to fix it again when it’d probably be the exact issue in a few more months and we’ve lost hundreds and hundreds of dollars in food over the past year. Plus whatever to fix it. My daughter has been eating a steady diet of spaghettios the last few weeks and whatever was in the ice chest, we did keep milk in it and some butter and cheese and medicine. I’m so thankful we have a fridge now!

I sat in the room at snack and dinner and will do the same tomorrow. They gave me a list of verbiage to start using as well. For now I just tell her what a good job she’s doing but can’t tell her what to do and if she wants something or refuses I have to ignore her and follow their lead. The other day one of the psychologists came and told me that I needed to allow them to clean Posie’s puke up while we were here. Then she did puke this morning and a nurse grabbed it up and cleaned it out and I thought, “Bless you, child”. Is this for real? This place really exists!? A place I don’t have to clean puke? WooHoo!!!

Okay, so here’s a funny . . . every time we get on or off the elevator, Posie has a “thing” she does. She extends her arm and straightens her hand and walks the length of the elevator WITH the door. I asked her why she does that because one day I shot off a warning to her about not getting so close to it when it was moving (the door) and she said, “Mommy, I am helping it close”. So that’s it. She’s trying to help the elevator door open and help it close, by motioning with her hand what direction it should move. How thoughtful. LOL It’s 8:35 and she’s already asleep so I’m hoping she rests well tonight and I’m excited to kind of wind down for the night as well. We’re going to have another big day tomorrow, new foods and new schedules and new people. Please pray for Posie.