This girl is a funny one. So are our ideas of how we think life is going to go. Big things and small things. Like showers. Last night after I wrote my blog she came up to me and said, “Mom, you have not been using my lotion!” Let me just say now, she doesn’t like me to use lotion on her, but I did bring some lavender lotion with us like the kind that I used to use on her when she was little, hoping it’d help her relax at bedtime. We just haven’t used it yet. But she remembered me talking to her about it last month, and it just dawned on her, I guess. So I asked, “Are you wanting to take a shower so I can rub some lotion on you?” She immediately squealed, “YES!”, so we did. I’m glad though because I knew she’d rest much better after having a shower. But if you remember last night’s post, you’ll remember how much I was looking forward to a HOT shower. Ha!

Ms. Edna, her nurse, came in and she gave Posie her medicine and then I gave her a bottle and she started guzzling it down. She wasn’t too happy to be woken up early for her meds (they came in at 5 today for some reason) but she managed to doze back off later. (On a solid note: the nurse today changed her med times so she’d get them at the same time every day from now on. Winning!)

This little miss didn’t sleep as much last night, not because she wasn’t tired, but because she was actually waking up every few hours to drink her Pediasure. She just kept waking up wanting her bottle . . . which meant mama kept waking up, too.

Her nurse tech came in and teased her mercilessly since she (Posie) won’t talk to her. She told Posie she took her nose, then ears, and eyes. She said, “I’m taking parts of you home so I can make my own little Posie”. Posie shook her head, “No”, that she disagreed and didn’t believe. But when the tech left Posie ran right to the bathroom and said, “She didn’t really take my nose, did she, mama, did she!? Let me check, let me look!!” She examined herself carefully in the mirror, much to her surprise, and her relief, her cute lil‘ button nose was still there.

Another tech came in for the Monday weigh-in and weighed her. Our first weigh in on Wednesday and second weigh in on Friday she weighed the same. She’s gained 1lb2oz since then. WooHoo!

She barely made it to her first feeding therapy, she was starving. She ate pretzels, strawberries and something else. Then she headed straight to O.T. After O.T. we came to the bedroom for a potty break and headed to Speech. She was very excited to have received some mail today from our sweet friends, The Chickering & Boyer Families, and she was smiling so big when she saw her name on the envelope. We’d actually walked downstairs to let them know that we were expecting a package with medication in it from her dad, for when the mail ran, and they had her envelope there (they forgot to give it to us on Saturday), and her eyes lit up when she saw her name. She was so happy for her card and gift from them, they sure blessed her.

Right after she opened her card she went to her second meal and she ate so good. I’m so glad she had that special boost from her card beforehand b/c she was introduced to new foods when she went, and she went in there feeling good, so that definitely helps. And y’all, she ate so good. So stinkin’ good! She ate bites of sliced ham, sausage patty, strawberry yogurt, and mashed potatoes. Oh. My. Stars! Yes. If you’re wondering. I cried through the entire thing. Like a dadgum baby. Gah.

When we were done we headed outside. She was really excited but right after we walked outside Rosa & Arthur (? I think the boy is Arthur) showed up. The therapy dogs. She is terrified of dogs so that made it hard. They played and ran around, letting off some steam, then went back inside, but she was about to have a panic attack the whole time. They stayed away from her, and barely let me pet them b/c they could sense her anxiety.

Y’all, nurses make the world go ’round . . . in case you were ever wondering and in case you needed to be reminded. I know I’ve said that before and I know I’ve grown up around them but seriously . . . these ladies and gents are some serious rockstars around here and I love watching them interact with these tiniest of people. Loving on them like they are their own when the parents have to go to work. Geeze I’m so thankful I can be here with her full time! They wear a lot of hats and then take home the extra baggage at the end of the day.

So funny story . . . remember when I told you that we learned that Posie’s security bracelet does indeed work? Well we actually set it off again! Hahahaha! The psychologist, Posie, and I were all headed down on the elevator to the 1st floor and the siren started going off before we got off the elevator. What? We kept walking b/c obviously it had nothing to do with us. I mean, we weren’t walking near the playground or an outside door. Well, it was us. People surrounded us and some workers threw their badges on a scanner to get the hospital siren off (which by the way, is so loud and can be heard all over). And they explained to the psychologist and me that since we were on the elevator and the back door that leads to the kitchen was open, it was set off. These double doors lead to a kitchen in the back, not directly outdoors, and we were on the elevator. It’s THAT sensitive. Oh wow! Hey, I’m not mad about it. They’ve got a good security system in place at this joint!!! Dang, Gina!

We came back to the room and she was so excited when we found our door was open and on her bed, there was a toy waiting for her. A Child Life worker had brought us a DollHouse from the playroom for her to play with in her room for a while. We’ll just check it back into the playroom when she’s done, but she was so surprised, and she’s been playing with it for a few hours now. Turns out she loves doll houses. That’s all she wants to play with.

Some of our feeding therapy times got changed up today and I’m okay with that. I had an important phone call to make and ended up talking for around 50 minutes and it needed to happen. Posie wasn’t upset about going to therapy sooner, b/c she’s constantly hungry since she’s not getting her milk anymore. But after therapy the therapist pulled me aside and told me it appeared that Posie was starting to “gag”, she spelled it out rather than saying the word, but said she just looked like she was going to but didn’t. As we walked away she looked like she was going to vomit and I tried to distract her multiple times but she ended up puking. A lot. The nurse went and got her zofran and gave it to her. A bit later she got up and played with the dollhouse some more and was feeling much better. She asked to go outside. That’s going to be a hard pass for me. Oh, she had a new tech for her last two meals. We really like her!

I’m so excited that we brought her zofran and I’m even more excited about these nurses and their reactions over here. I keep hearing the same thing over and over again but it doesn’t get old. And just this afternoon when the nurse gave her zofran to her after she puked, she said, “I’ve NEVER seen this before!!!” I explained to her that I heard that all the time and she said, “This would be great in a place like this, for the kids, I’m sure the doctors will start using this here!” Oh. My. Word! That was so cool to hear! Yes, some drs use topical phenegran for patients but a lot don’t and if they do it’s not for an extended period of time like the zofran. I know that’s it’s hard to get kids to take meds they don’t want to take and I know it’s hard when you’re a care provider (whether a dr, nurse, or parent) and you’re unsure of what medicine actually went into the child b/c they either spit it out or puke it up. For them to not have to have to fight a child with oral nausea meds, IVs, or suppositories . . . that would be great. I know the struggle. I love, love, love that this medicine could help other kids here!! This is so awesome!!! Yay, God!

I did a thing today! I finally called Children’s Hospital back to get her follow up appt scheduled to come in and see the neurologist in a few months. Sadly we will be seeing a new neuro since ours moved away, but I’m praying for (believing and trusting) that we’re going to be paired up with a great doctor. Our next appointment will be an assessment of her and possibly another MRI. Our dr’s intent (or hope) was to space the follow-up MRIs but she said that she will always have subsequent MRI’s to follow the progression of the Hypertrophic Pachymeningitis and the brain atrophy and monitor for any new subdermal hematomas.

This evening at 4 PM she told me, “I want my milk, mom. I can’t wait,” as she cried and cried and cried. I felt terrible because she’d puked everything up already. I knew she was so hungry. It made me so glad that I don’t have food in our room (that she knows about, just a few snacks friends sent with me). She started asking, “Mommy, do you have any food in here? Do you have anything for me to eat in here? Please. Do you? DO YOU!?!!”

Feeding therapy started half an hour early b/c of a schedule change, but then it was later than planned b/c of a fire alarm going off. The staff pushed us all back into our rooms and we had to wait it out until the all clear could be given. Posie explained to me what she learned at school during a fire drill, how they went to the bathroom and huddled. I asked, “Are you sure that isn’t for a tornado? Because for a fire you actually go outside.” She insisted it was a fire drill. Haha. After the fire drill was cleared they let us out of our rooms and we were able to head downstairs for therapy. By that time the therapist was on her way up here to get us, she understood we were caught up in the alarm. I appreciate them taking safety precautions. Nobody wants to get caught in an elevator during a fire.

After her 6 PM therapy tonight we went to the cafeteria and I was going to get a sandwich from the vending machine like I did the other night. They had one more left (they expire tomorrow) and I went to open the fridge door, lil‘ Posie looked up at all the choices, (some that her feeding therapist back home gives her) and other items she actually will eat sometimes and her eyes lit up, “Mommy I don’t know what I want yet!” I explained we might come back down before we get to go home and buy some stuff together but that was a nice walk and it was time for a shower. Geeze, pull on my heart strings!! I’ll try for supper tomorrow, she just doesn’t understand that I can’t eat in front of her and she isn’t allowed to have anything they don’t give her. I was planning on taking something to the room to eat around midnight again. I can’t do it. Thank you, friends, for plantain chips and beef jerky, and the hubs for the peanuts. I’m just saying, when I leave here, I’m going to On The Border. I’m not going to be mad if I lose 5lbs while I’m here. Or even 20. Hahahaha. That sweet face got mama’s heart tonight, I’m not going back down there with her again. Tomorrow is a different day. All of our OT and speech is packed into 8-1, feeding is as usual, it’s going to be a crazy day for her. Please pray for Posie.

v