Time Flies When You Have A Routine!

We are a full week into our hospital stay, and doing pretty well. We are very fortunate to live 10min away from a good children's hospital. They have been very helpful with making our stay as comfortable as possible. I sleep on a pull out couch in 4's room, and am blogging from it right now. The Child Life specialist comes by every day to bring toys, books, and craft supplies. She also set us up with some sweet homeschool supplies, so we have started preschool in the PICU! There is free internet access, and an ice machine...what more could we need?

The cloth doll given to baby 4 by the child life specialist

She helped us give him a trach

Our classroom

College Prep Work

The Ronald McDonald House has been a HUGE help to us. They feed me and Brandon everyday and provide free use of their washer and dryer. The volunteers have been so nice, calling us by name, and answering all of our questions. If you are ever looking for an awesome charity to give to, click here. I can attest to the great work the organization does. Having clean clothes and hummus with pita bread today made the entire world look a little brighter.

One of my fears when I realized we were headed for an extended hospital stay with 4 was that his behavior would regress after he had made so much progress this past month. When we first met, he was completely in charge of his whole day. He was rude to mostly everyone- either in tone when he chose to speak, or when he would make animal noises in response to a request. He was watching hours of TV on end, sometimes repeating the same movie 3 times in a row with no one stopping him. He was barely sleeping, going to bed at midnight and waking at 8am with no nap. I wanted to do everything I could to prevent that slip back into monster-mania.

The first thing I did was make a schedule and hang it up in his room. The nurses here are the same ones who experienced his craziness during his last stay, and I wanted to let them know that his behavior can and will be acceptable. When he waits for me to use the bthroom so he can ask the nurse to turn te TV on, the schedule is there to tell them both that play is the priority for a 4yr old, not movies.

Here's our schedule:

7am- Wake up, dressed, TV time
8am- TV off, breakfast
8:30-10am-Playtime, TV off
10am- Table time- Shapes, Colors, ABC's, Counting
11am-Nap
12:30pm-lunch
12:30-2pm-Movie
2-6pm- Playtime- TV off
5pm- dinner
6pm- Meds, Trach care, PJ's, Stories, Songs
7pm-Lights out

It has worked wonders!! The TV time has served as a valuable currency between me and Baby 4. He earns it by following morning directions and taking a nap and he gives it up by hissing at the nurses or calling the patient care tech, "Nasty". He's also just all around easier to handle when he's well-rested. Having the schedule also helps me break up my day so it doesn't feel so long. I know that when I'm playing "What's this dinosaur?" for the 103rd time in 20min, that in just 75min, nap time is coming!

How do you play "What's this dinosaur?"- Something like this:
Kid (sitting in front of a box of dinosaur toys): What's this dinosaur?
Adult: I don't know
Kid: It's a T-Rex
Adult: Oh, that's right. See? You're so smart, you don't even need me! (thinking:"Maybe I can sneak in a couple minutes of reading my Marie Claire magazine)
Kid(holding up new dino): What's this dinosaur? (thinking: "You can't escape, you will answer me!"
Adult: Umm.. anklosaurus
Kid: You said it was a brontosaurus last time
Adult (thinking:"I made up answers both times"): You know, nap is only 75min away, we should start cleaning up now.

The next step is staying on top of his language and attitude. I instituted a policy that 4 will speak- in English- to any grown up wearing scrubs (or pajamas, if you ask him). He is doing really well, even saying thank you to the maintenance person who empties our trash. When he growls, refuses to answer a question, or is rude, he has to put away everything he's doing and sit by himself until he decides to do the right thing. If the adult leaves before this happens, he has to wait until a new adult comes in so he can speak nicely before the TV goes back on or the toys come out. People in pajamas come through his room a million times per day and I've only had to break out the discipline 3 times. He figured out it's easier to say "I'm good" when the Dr asks than to miss out on your favorite part of Nemo (the shark part).

Lastly, we've been doing a lot of reading. There's a rocking chair in our room, and my favorite part of the day (second only to "What's this dinosaur?") is rocking him in my lap and reading to him.

Our Library

By far, the greatest Amazon find of all times is The Star by Cynthia Miller Lovell. It is a kids book about foster care from the view of a preschooler. It's the perfect bed-time story length and 4 loves it. The only change I would make is that the majority of the people in it are white, which isn't necessary.

The Star follows Kit through being removed from her home, placed in a foster family, and her first visit with her caseworker. She talks to a Star outside her bedroom window who assures her she's a good girl and not alone. Baby 4 identifies with one page in particular:

Baby 4 loves to tell me how he's feeling using this page

We read it almost everyday now, and we both love it.

The plan is to move out of ICU tonight or tomorrow, and we're one step closer to going home! While being here is still tough on both me and Baby 4, our routine is certainly helping move things along!