Day Nine

Olive first thing in the morning. A sleepy monkey.

9 days down. 1 to go. It’s odd to be this close to the end. There was so much lead up to this event, and now we are getting ready to say goodbye. It’s both daunting and exhilarating to be going home. We will of course be on our own without the direction of a seasoned professional deciding the minutiae of Olive’s tube feeding, oral eating, and hydration. That scares me. It’s an inexact science to begin with, but there will be a learning curve for sure. Thankfully Polly will be available to us by phone and email to help us with the next steps, and Olive will be followed closely by her primary care provider. We also have the great resource of a local dietician and our local feeding therapist. So we are not alone. It just feels like it sometimes. Especially at 11 o’clock at night when we blearily look at each other with blank stares after adding up Olive’s calories for the day deciding whether or not we need to add anything else through her tube. Thankfully we are in it together.

Queen of the dollhouse.

Last night after decompressing a little bit we walked to the nearby gas station. Olive is big on picking out treats, and we let her to try to normalize the activity of eating as most kids want to get something to eat when they see a row full of candy. She picked cotton candy, proclaiming “oh cotton candy from the baseball game.” Because one time this summer we went to a Twins’ game and had cotton candy. So that’s what she picked. Good old pre-fab gas station cotton candy. We didn’t really think she would eat it, but she surprised us by wanting to try it immediately. And to our astonishment, she ate some of it. She took very small pieces, but she actually let it melt all the way in her mouth. It was great to see her finally put something in her mouth that didn’t come back out. I’m not sure if cotton candy really counts as “food” per se, but Polly was excited about it when we told her this morning because she says that is a great gateway to other items that melt in your mouth but take longer to dissolve like Cheeto puffs for example. Because meltable foods are the stepping stone to other foods. Polly in fact gave us a sheet with a hierarchy of oral competence, and it is amazing how many steps there are to becoming an eater. Of course most children develop these normally without their parents recording the moment they can do things like "allow soft food to touch teeth surfaces," but it’s nice to see that Olive is moving up in her skills.

Olive's fortune. Let us hope.

Before dinner last night, Olive drank another nine ounces from her milk bottle, even after we had tubed two ounces of her regular lunch and two ounces of water in the early evening not wanting her to feel like she was starving as she did on Tuesday night. We had Chinese delivered to our room, and Olive did a good job tasting each of our meals. She also really enjoyed dipping a piece of a wonton in soy sauce and tasting that. She also bit on Cheetos. She took so much milk that we did about half of her dinner blend through her tube before bed and the other half while she was sleeping. We want to get those calories in while still allowing for hunger so Polly feels dinner is where we shouldn’t hesitate to still tube a full amount if not more as it will definitely empty from her tummy by morning. 

Family time. No shortage of that these past few weeks.

It was pretty clear today that Olive has had enough of feeding school. She was defiant for breakfast refusing most everything except for milk. The only thing she did taste was a few pieces of cereal that she then spit out. And Polly had to throw it down that we were going to have leave to get her to take three bites of sausage. So that was not fun. She’s been away from home for a long time now, and the girl is just exhausted. She did, however, perk up for preschool. Olive chose a puzzle for the first activity, and then Crystal had a great activity planned where Olive got to scoop out a pumpkin and then paint it. She loved it. Although she very gingerly picked out one pumpkin seed a time, wiping her hands often. She’s not a fan of stuff on her hands, but she loved painting. After that they read a book and then Olive got a lot of time to play with the kitchen, which is hands down her favorite thing to do in that room. Crystal even wowed her with a new bin full of food. Olive pulled out a whole fish. She was totally fascinated, sitting down to inspect it for a minute before declaring that he was “kinda creepy.” A funny observation from her, although I totally agree with the assessment that it would be creepy to eat that whole fish like that. 

This guy IS "kinda creepy."

After preschool she had time to play with Patty in the play area. She is now obsessed with the little people dollhouse. Loves it. She puts the people to bed and sits them at the table and drives them in their car and narrates their every motion up and down the staircase. It’s never ending imaginary play for her. There are always lots of other kinds around, which is great for her to get to interact with kids of all ages as she has done much less of that than her peers. She’s really open to most kids, but she seriously dislikes babies. If she so much as sees a stroller, she says “this baby go home.” So imagine her dismay when a baby crawled up to her dollhouse table and pulled himself up and stared at her. She didn’t know what to do with herself. She froze with a look of panic before telling him to go home. Lucky for her a fire truck came by outside, and she ran to the window distracting her from that predicament. We’re pretty sure it would ruin her life to have a sibling.

Biting Goldfish.

Next up was snack. It went better than breakfast but not her greatest effort. Polly wowed her with a plate of goldfish, both regular and the s’mores variety. Olive is very familiar with goldfish so she readily tasted them. She even bit into a few at Polly’s direction, and let Polly place two on her back molars for biting. She also enjoyed dipping the chocolate ones in chocolate sauce and licking some of it off. She also drank her milk with the straw with a large dose of encouragement. She was well behaved enough to let us have a conversation with Polly about where to go from her. Polly will give us an official discharge report though outlining our next steps in helping this girl become an eater. 

Olive's spider. This guy is legit.

After snack came our session with Ms. Jen. Olive was ecstatic to start with the little ride on car again announcing that Dain needed to go hide (as he did a few days ago.) She had a time of it having us hide and hiding herself in the hallways. It’s a great activity to get out her nervous energy. After Jen pried her away from that fun, they sat down to make a Halloween craft. It was a construction paper spider with googly eyes. Olive killed it. I’ll let the masterpiece speak for itself. Olive didn’t want long legs like the example spider had. She wanted short ones. And lots of eyes. Next up they played with busy bugs. Jen had Olive match the bugs by color to pictures on paper cards. The hard part was trying to use tongs to move the bugs. Olive is so close to getting it down, but we'll have to keep working on it despite the debatability as to whether tong use is in fact a necessary life skill. We ended with Mr. Potato Head. Such a classic toy. Yet it was Olive's first encounter with him. It was great because Jen just set out all the parts and the body. There was no example for what it should look like. Hilarity ensued. Olive insisted on putting the shoes where the hat should go, the eyes in an earhole and other random face parts scattered haphazardly. It was fun to see what a kid does with it when they don't know what they are supposed to do with it. 

Obviously the shoes go on top.

Following occupational therapy, we did lunch on our own deciding to give Olive a break. We went to a local burger bar. Olive was downright squirrelly from exhaustion so it was mostly Dain and I shoving food in our mouths as fast as we could as Olive flopped around on the booth. Olive did taste some pretzels and a tiny bit of hummus. And she took four ounces of milk. We ordered her a grilled cheese that she took three tastes of. It doesn't really make sense to order a non-eating child a whole meal, but it honestly just makes me feel better as a mom to do so. Like if we all pretend we are "normal" then one day we will be. Mostly it's a waste of money, but I want Olive to understand the cultural importance of sharing a meal together and the joy of it in addition to accepting the absolute necessity of eating food to survive. Because a lot of our culture revolves around food. Some may say that it shouldn't, but some of my greatest memories involve food: the cookies my grandmother had waiting for us every time we visited Kansas City, breakfast on Christmas morning with my family as my brother's kids run around the table in anticipation of gift opening, grilling at sunset on the beach with my best friends in Florida, the amazing spread my dad puts together for Thanksgiving, the creme brûlée my mom and I ate in our hotel bed in London on one of our fabulous adventures, and the unbelievable chocolate chip/butterscotch/toffee ooey gooey cookies that my dad would bake in batches of 144 and my mom would deliver to us in the NICU for ourselves, the Ronald McDonald House and the staff, bringing a little light to an otherwise dark place. I could go on.  I want so badly for Olive to have those experiences. And I think she will in time.

Grilled cheese for one.

Olive took a much needed nap in the day suite after lunch, and she woke up with new energy asking to play with Ms. Patty. We did that for a few minutes before our last snack of the day with Polly. We had to pull her away from the dollhouse as she always asks to at least take some of the people with her. No dice little lady but props for your persistence in trying to take them every time. There is also a toy egg that Olive tries to sneak from Polly's kitchen. As if we won't notice her walking down the hall with it. For snack Olive took very little once again, but she did drink her milk. She took a few licks of goat cheese and mostly just played with some Cheeto puffs. It's hard to watch her fight it so hard. I don't know how it will go with us at the helm all day everyday, but all I can hope is that she continues to improve.

After feeding school we rolled out and decided to reward Olive with a visit to a local toy store called Shenanigans. It was great fun. Olive played with the train table, rode on every toy available, and pushed a little shopping cart around in hopes that we would walk out with all the items she threw in there. She settled on a boat set, which is very fitting since the girl sings "Row, Row, Row Your Boat" all day long. Then we treated ourselves with a stop at the Sweet Haus for cupcakes before heading back to the hotel. After tubing about half of Olive's lunch blend to make up for her lack of oral consumption of anything other than milk, we went to the park for a bit and grabbed sandwiches to bring back to the hotel. Now we are left to pack our stuff as we have to check out tomorrow morning, go to the whole day of feeding school, go trick or treating on the Lawn at UVA and then drive to Richmond for one night at the airport hotel before we fly out early Saturday morning. There is never a shortage of things to do. Here's to hoping the return trip goes as well as the trip out here.

She's packing herself. Clearly it's time to go home.