Day 2: Pray for Posie

She was so adorable sleeping next to me last night. So peaceful . . . exhausted from crying so much of the day no doubt.

Funny girl. She woke me up just after 5 a.m. (nothing out of the ordinary there) and asked if it was morning and time to get up yet. I told her that it was not and we should go back to sleep. That didn’t work, shocker. We stayed in bed for an hour or two and eventually I got up and made some coffee (which I haven’t had in a very long time and always regret later, but geeze I was tired). I put a clay mask on my face and I wish I would have caught her expression on camera. It was priceless. So I feel like we’re even.

I didn’t know so many emotions could run into each day. It’s been a pretty long day already. Tomorrow will be interesting for sure.

We all know that when you leave home you’re bound to forget something. I finally realized what I’d forgotten. I forgot one of Posie’s medications and her glasses. She hasn’t been wearing her glasses for nearly six months but my hope was to get her to wear them again while here. The other, her medicine, we have to have during check in. The hospital coordinator did tell me that a picture from home will suffice and that her dad didn’t need to overnight the bottle, which is a blessing.

But . . . funny story.

I got a text message from her dad at midnight, with an idea that he’d just drive back down and take us to the hospital. I told him no, because my other daughter has an appt with the orthopedic dr today and that’s silly for him to drive 7-8 more hours today. Absolutely not.

Then this morning he called first thing and said that he was going to drive down here and take us to the hospital and he rescheduled our daughters dr appt. He wanted to make sure he got us to where we were going and that we didn’t have to worry about not having help with our bags (there are a lot and I do have a torn rotator cuff) and there’s the shuttle, we don’t have a carseat and we’re in Dallas. It’s only a couple miles to the hotel but . . . I told him that was not necessary and it was a waste of time/gas money. He insisted. So that’s that. We grabbed lunch and went to the hospital and checked in earlier. They were ready for us.

This is just a branch of Children’s Hospital that’s 3 miles from here from what they told me this evening. This is a 2-story specialty hospital with a feed ward, rehab ward, and pulmonary ward. They even have an “Emergency Room”, that’s actually one room, where they’ll take a caregiver that has an emergency to work on them till help arrives, or to do procedures/ng tubes or whatever.

The coordinator wasn’t kidding, the rooms are small, I’m sitting on the couch on the other end of the wall. Welcome Home, for the next 30 days!

I have to wear an orange bracelet the whole time I’m here with her. I can’t believe I’m saying this, but orange looks good on me.

“I will not wear that gaudy orange, I will not. It is not my color wheel and I’m not gonna wear it.” ~The Blind Side

It doesn’t look this clean and big anymore. Not since we made ourselves at home. Funny story . . . I didn’t bring hangers. I guess I thought there would be dresser drawers. Oops.

It smells clean and looks clean. I just want to tell you how happy I am about that. Seriously.

This is so funny. She thought this was her bed. When she lays down all the way and is stretched out comfortably, she fits it perfectly, it’s the same length as her. Hahahaha! At least it’s much wider than a sofa chair like I’m used to. I think they undersold it.

Everyone has been really kind today, from the sweet lady checking us in, to the nurse and the techs, to the dietician and speech pathologist and dr. We meet even more people tomorrow. Posie will be fed at 9am, 12pm, 3pm, and 6pm. During her meal times I will be watching on another side of the glass, listening in. I’ll do this for 2 weeks. After 2 weeks is up I will go in with the therapists and work with them. The last week we’ll switch roles, they’ll be on the outside of the glass monitoring my interactions with her.

She said, “Mama, take a picture of me!” Then she did the “unicorn” pose again.
I love the girl!

The dr came in and talked to us tonight. He wanted to make sure we understood the possibility of a feeding tube, encouraged us with the success he’s seen while he’s been here, and cautioned us against going outside the gates at night. He said it’s a terrible part of town and they have some bad stuff going on. He won’t have to worry about that, I’m not leaving the gates at all b/c she’s not allowed to leave and I’m not leaving her.

There’s fun to be had in these hallways!

It’s nearly 7PM and we’re about to meet more new faces for the shift change and then I’m hoping that I can get lil’ miss into the shower. She has to wear a bracelet the whole time we’re here and she didn’t go more than 2-3 hours with that on and they had to replace it with one wrapped around her ankle. She’s always had Sensory Processing Disorder and when they asked me if they should put it on her wrist or ankle I somehow thought ankle? What?

She gets to have her milk bottles at night. Then in the morning she won’t drink any milk after 6 or 6:30 am, that way she’ll have a “chance” of success at her therapies. She’ll be able to have a bottle after her 6:00 pm feeding therapy in the evening. Please pray for Posie!