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.

Day Eight

Outside the UVA Battle Building.

Wow. We are worn out and ready to be home. Tonight is our twelfth night in a hotel. Thankfully the end is in sight with only three more sleeps until home. Today was a good day on the eating front, but I for one just hit a slump today. The build up of exhaustion and stress is dragging me down. Plus my daughter informed Polly this afternoon that she was busting her balls. Apparently I need to censor myself more as Olive has reached the language threshold where she can hear something once and tuck it away inside her little head waiting to repeat it and mortify her mother. The only redeeming aspect is that Polly didn't understand exactly what she had said. I certainly didn't clarify, and they moved on. So that.

Speaking of that troublemaker, she had a good morning. She didn't get nervous or throw up when we got there. I admit that I have been sitting next to her in the back of the car in a so far successful attempt to mitigate the odds that she will get anxious about our arrival. If only I could clone myself and do that at home to prevent her vomiting when we arrive at places like her Tumbletots class or school. But hopefully she grows out of that soon.

A firetruck sighting is a good start to any day.

She is already much braver than she was when we got here. She is now willing to be weighed without throwing a fit, which is a big step for her. Breakfast went well with Polly. Olive drank her milk, and she took a few bites of whipped cream cheese off of a spoon. She also was willing to try sausage, and she practiced biting pieces and spitting them out. And she thoroughly licked a piece of bacon. Polly also presented her with a mini muffin. She mentioned school and a boy from her class when she saw it because she had that for snack at school the week before we left. She has an incredible memory. She very bravely took two bites of the muffin, but then spit them out too afraid to try to chew it. It doesn't sound like much, but she had a positive attitude about breakfast so that was a nice way to start the morning.

This muffin is terrifying.

The dietitian, Sarah, sat in on breakfast to discuss our nutritional plan, and then I sat with her for a little while after in the lobby while Dain took Olive to play. Sarah admitted that it's a tricky spot to be in since Olive has been getting such an amazingly nutritious diet through her tube. She wants to help us facilitate hunger without taking away all the great nutrients. We talked about some different options, and she is going to write up a plan for us to switch a few things around in our blend to hopefully still provide nutrients while cutting calories so she can work on taking them orally. For example, we are cutting out her high calorie yogurt/peanut butter snack all together as that can be replaced with her milk intake. We are also going to cut the oil in our blends in half to take out fat calories. We will still give her a full dinner blend with about half of breakfast and half of lunch. And we will add a multivitamin to cover our bases on micronutrients. This will of course need to be tweaked regularly depending on her weight checks and her oral intake. Unfortunately today her weight was down. It was 10.45 kilos. Her previous weight checks were 10.4, 10.55 and 10.65. We have an appointment scheduled with her pediatrician for early next week to get a baseline weight at home.

Washing dishes.

After a few minutes of play time with Patty in the play area we headed to preschool with Crystal. The first thing Crystal had was a tractor book that actually had wheels and could roll around. Of course Olive loved it. They read it, and she played with it for awhile pushing it around and regaling Crystal with tales of her tractor rides. "Obbie go on a tractor ride." "Farmer drive." "Mommy sit by you." "My daddy go on a tractor." After that fun we looked at the globe since Olive had asked about it yesterday. It was a little advanced for a two year old, but we showed her where we live and where we are. Later in the day she belted out "up here in Minnesota!" so she was obviously paying attention. Then we all painted with water colors, with Dain showing up the ladies of the family. The painting ended in a power struggle because Olive wanted to be in charge of the paint and the water, and Crystal told her no. Typical two year old stuff. She recovered by moving on to the puzzle from yesterday that she had liked. She did that for awhile, and then we ended with time to play in the kitchen.

Putting on the Ritz.

Then we headed for snack with Polly. Olive was excited to see pretzels. She mostly likes to lick the salt off, but she took a few bites, spitting out the pieces. Then she dipped some in hummus and took small licks of that. Her favorite was the goat cheese that she took a few big licks of. Polly continues to try to get her to close her mouth around a spoon to get all the food off. That's really hard for her, but she's trying. She also took some nice small bites of Ritz crackers and then worked on keeping the crumbs in her mouth to work them down. She probably ate 1/4 of a cracker with a lot of encouragement so that's nice to see her putting the skills together of biting, chewing and swallowing even if it is very much a struggle at this point.

The Olive taco.

Polly also started to try to do some language testing, but Olive was totally messing with her. She pretended not to know words that she clearly does know. She was amused with herself and totally doing it on purpose. It took Polly all day to get it done and even then she just stopped when Olive hit two years and six months on the test because it was such a struggle to get her to participate. She would look at a house and say it was a dog. Or just pretend she couldn't hear Polly.

Lounging in the rice and beans.

We had a short break in the play area before Olive's favorite session with the occupational therapist Jen. First they did swings. Jen introduced a new one she calls the "taco swing." Olive loved it. They also tried another hammock swing that she was equally amused by. Then they worked on blowing cotton balls with straws to improve oral skills. After that, they made a construction paper pumpkin, and then they had a car wash, hitting on Olive's love of both cars and water. The soap was shaving cream, and they would rinse and dry. By Olive's special request they also played with the rice and beans bin at the end. Olive decided that it wasn't enough to bury her hands or the cars. She wanted to bury her entire self. She hopped right in and asked Jen to do that saying "bye-bye Obbie." Disappointingly for her, there was not enough beans or rice to cover her tiny bod.

Next we walked to grab lunch for ourselves before heading back to the kitchen for lunch with Polly. For lunch Polly presented Olive with cheese slices and tiny cookie cutters. They cut animal shapes in the cheese, and Polly encouraged Olive to try to take little bites and then keep chewing. The girl just hasn't grasped chewing yet. She will do one or two chews and then she spits out the pieces, not understanding that she needs to keep chewing and then swallow. Olive took a few good bites of spaghetti sauce (letting the noodles slide out of her mouth of course.) She was very reluctant to try the meatballs. She took a tiny lick but was unwilling to take a bite. She also drank her milk, but in case I haven't been clear about this, it is work for the adults involved to get her to drink the milk from her straw cup. It is a lot of saying ok let's take three more drinks and then we can see this, with cars and books and various things being the impetus for her to take those drinks. It's utterly exhausting in my opinion, and I really don't know how I'm going to do it by myself the four times that I will have to every day while Dain is at work. It's an untenable proposition really, and we are going to have to figure out a realistic plan for coming home. Olive is really all that I do. And that was ok in the beginning because she was so fragile and needed so much, but as she gets older we really need to find ways to balance our lives more.

Cheese party.

Following snack, we headed to the day suite for an outfit change for Olive who just gets absolutely covered in food at every session. At the end of today she looked like a human Cheeto. Her clothes have been destroyed on this trip. Olive took another three ounces of milk from her bottle before taking a short nap. After she woke up, we had a few minutes to play with Ms. Patty, who helped her make a skeleton art project. Then we had our last snack with Polly. This one was the worst of the day. She played with cheese mostly taking just a few licks. She didn't touch her creamy items, opting instead to suck on Cheeto puffs. She did get some crumbs of that though and was able to swallow them down with milk. She was clearly just tired. She was mostly playing with the cheetos by the end, delighting in breaking them up into crumbs. It was a battle to get her to drink her milk from the straw too. Polly enticed her with a truck puzzle book though, and we powered through. But I think we all walked out of there a little dejected.

Receptive language testing.

It's hard to hear that you just have to wait for her to get older to grasp these concepts. Polly said that Olive tests normal cognitively and for language but that maybe she is just emotionally behind her peers because she seems to have less of an understanding of contingencies than other kids her age. She said she may be more like a 24 month old in terms of her behavior based on her prematurity. I don't really know if I agree with this or what the point is of defining exactly what month she is developmentally in different areas. Olive moves at her own pace. We've accepted it. The girl didn't roll over until she was a year old. Three months later she started walking. We don't expect her to be exactly like her peers much like I wouldn't expect a full term baby to be exactly like his or her peers. Every child is different, and your expectations of who your child should be can really get in the way of the awesome person that your child already is today. Olive is really good at doing Olive. Even if it does bust my balls.

Day Seven

We pumped ourselves up this morning with sporty apparel
and "Eye of the Tiger."

It's 80 degrees and sunny here. That makes it pretty hard to have a bad day. Our Tuesday was decent. We made it to UVA on time without anyone throwing up. A solid start. Unfortunately Olive was not very cooperative for breakfast. She refused most everything. The only item that piqued her interest was mini M&Ms. She did a good job of putting those in her mouth and keeping them in. Of course once they started to melt too much she felt the need to spit them out. But she sucked the candy shell off of ten of them so that was good to see her actually interested in something. She was otherwise not willing to follow Polly's commands to try something else. It was frustrating. Polly keeps using words like "tenacious" and "strong willed" to describe Olive, and she says that Olive is more determined than most kids to do what she wants to do. This of course is not a surprise to us. We've lived it for almost three years. She also adds that if she wasn't so tenacious she wouldn't be here. That makes me a little sad to think about, but it's true. We're lucky to have her, and she's fought to be here. I remind myself of this, and it minimizes the gravity of her feeding issue. We will get through this. Polly thinks within eighteen months Olive will be an eater. She says she has too much going for her to not figure it out. 2016 tube removal? I'll take it.

M&M tongue.

After snack we played with Ms. Patty, and she gave Olive another book to keep. The books are donated to the hospital, and it is such a great program. We have quite the collection going. Today we received "It's Time to Sleep My Love" and "Monkey Truck." Next on the agenda was preschool with Crystal. Olive is much more enthusiastic about this now. They started with reading a firetruck book, which Olive loved since she has a small obsession with any type of vehicle: bicycles, cars, trucks, planes, motorcycles, boats and most things with wheels. Cement mixers and tractors are especially delightful to Olive. That's our girl. After the book they did a shapes puzzle. Olive surprised us and really focused on it for a good twenty minutes. It's fun to see her mind work as she tries to figure something out.

Preschool.

Crystal had to pull her away from the puzzle she liked it so much. Then they did some art with markers and masking tape, and we ended with free play time with the kitchen. Olive says "wash dishes with Ms. Crystal" at random times so we know she likes it a lot. She puts everything in the sink before washing it all one by one, down to the corn on the cob and piece of cheese. It's great imaginative play.

After preschool came snack with Ms. Polly. This one bordered on disastrous. There were tears and screams and a lot of emotions. It started ok. Polly offered her lime yogurt, whipped berry cream cheese, and easy cheese. She refused the first two and took the tiniest lick of the cheese off of her finger. Polly wanted to help her and have her take one big lick. She flat out refused. She's at the age where everything is a battlefield, especially if it involves the scary world of food. And it becomes a power struggle. Polly threw it down that mommy and daddy were going to leave if she didn't taste something. She screamed and threw things on the floor. Polly warned her again. Olive held her ground. And then we were asked to leave. Cue the hysterics. Olive wailed and screamed. It was so hard to listen to as we waited in the hallway. I realize the point of it. Olive can't win every time. But every fiber of my emotional being wanted to run in there and scoop up my child to protect her from that sadness. I also had the mom guilt that she was somehow going to stop trusting us because we abandoned her.

Hey Olive, make yourself at home.

We were also just waiting for her to throw up, and any time she gets really worked up she tends to do that. Polly told her what she needed to do for us to come back in, and she did finally take a big bite. It felt like an eternity, but I'm sure it was only a minute or two. And she miraculously didn't throw up. We've never really had to discipline her too much before, so it was a hard cold dose of reality for the girl that is used to her parents catering to her every whim. Lesson learned. But she was an emotional wreck after that with her puffy red eyes. She didn't finish all of her milk as she has been doing for pretty much every session with Polly. Every day seems to hold the good, the bad, and the ugly. This morning's snack was the ugly.

Luckily Ms. Jen was our next appointment. Olive's new phrase du jour is "what's next?" And her eyes light up when we finally say it's time for Ms. Jen. She always starts with a gross motor activity to get Olive moving and get out any nervous energy. Today's activity was riding on a toy car on a little tour around the floor. Olive was pretty focused on the fact that the car had a phone attached to it, and she kept picking it up and saying "hello?" But once we made it a hide and seek game where Dain would run ahead and hide around the corner she made her way around the big circle.

Jen explained to us that it was actually kind of difficult to think of activities for Olive because in the occupational therapy world she is very high functioning. So Jen is trying to work on some new skills but also focus on ways that we can try to ease transitions and calm Olive's natural trepidation when encountering the unknown. Jen suggested trying to use some of these strategies before eating times, which is actually a great idea. For example, swinging calms her and doing an activity with lots of movement like running and jumping definitely helps to take her mind away from her nerves. Our minds are already spinning as to how we can incorporate some of Jen's ideas into our home life. An egg swing chair might be a nice installation in our living room, which has remained without proper furniture or a coffee table since Olive came around. More important things to buy and do.

After the car, Jen and Olive worked on some fine motor skills. They used tongs to pick up cotton balls. Olive hasn't quite grasped the skill yet. She still uses one hand to put the cotton ball in the tongs before squeezing it. It's painful to watch the struggle. Jen said it's a great "pre-scissor skill" to work on. I have honestly never considered Olive's scissor skills. She would like to use them at home, but you better believe I hide them. But apparently this is the age she should start learning. Jen has learning scissors that are more like tongs with a loop at the top. They worked on snipping pieces of "snow" from construction paper. Olive did better with Jen helping. After that they did the rice and beans bin, which Olive loves. So much so that she got in. Just climbed right in. And then she proceeded to have Jen bury her hands and feet, and they took turns hiding cars in it. It's the little joys in life. She was beaming. Jen makes a great picture schedule to show Olive all the activities with the last one being "shoes" meaning it's time to go. Olive isn't a fan of that activity, but Jen promised to see her tomorrow and do more swings. So that'll be fun.

Hanging out in the rice and beans.

After OT we had some free time as Polly was unable to have lunch with us today. It actually worked out perfectly because it meant we got to sit outside on a gorgeous fall day. We went to the Mellow Mushroom pizza place across from the medical center. It was delicious. And Olive actually did her best job eating all day. We didn't pressure her. We just offered her food and let her do her thing. She did a great job licking all the salt off of pretzels and taking a few bites. And she dipped a few in hummus and took some good licks. She also licked parmesan cheese off of soft pretzels we ordered, and she took about five good licks of the marinara sauce they came with. She liked the cheese so much she was even willing to dip her finger in it and lick it off, which Polly tries to get her to do with crumbs to get used to them in her mouth. She also drank four ounces of milk with a little encouragement. It was nice to have a meal without the stress of having a showdown with a two year old every minute.

After lunch we took a nap in the day suite. And by "we" I mean Dain slept in a chair while Olive slept in my arms in my chair. It's hard to resist her sweet voice saying "mommy rock you to fweep" before nap. We've created a sleep monster, but we've had enough battles over eating that I just wasn't willing to battle over naps on this trip. So I gave in to her demands and literally rocked my almost three year old to sleep. It's on the list. Believe me. Eating. Sleeping. Getting rid of pacifiers (that she still uses at sleep time.) Oh, and potty training. Just thinking about that list makes me want a nap.

After nap came one more snack with Polly. Olive took a few tentative tastes of guacamole, and a few tiny licks of goat cheese before she shut down. And then she shoved a bowl of chicken noodle soup at Polly sending it flying. I was horrified. Our child is defiant. Polly was very stern with her, pushing her away from the table and saying "no" very authoritatively. But they moved on. Olive took another taste of the soup, and even licked a noodle too. Polly put the noodles on a spoon and asked Olive to give them a kiss. She complied right away. The only problem is that it resulted in a spoon of noodles to Olive's forehead because the girl thinks a head bump is a kiss. She just leans her forehead into your head to kiss you. In all honesty we didn't dispel this notion for awhile because we are total germaphobes, and we certainly didn't want Olive giving kisses when she was itty bitty. She does now kiss with her lips, but you have to specify for her to use her lips because the head bump is so engrained. It's interesting to see that with a nonthreatening command, Olive complies right away. Of course she could kiss those noodles because that had nothing to do eating in her mind.

Guacamole? Meh.

So snack was kind of a bust. Polly said Olive is clearly sick of her and that she had more desire last week. That is disappointing of course, but there's not much we can do to change Olive's internalization of everything she's experienced these past ten days. Her world has changed in a major way. She is now responsible for some of her calories, and that is a big shift. Polly really wants us to try to cut calories to try to stimulate Olive's hunger. She did the math on it and told us that Olive can grow on a very small amount of calories relative to most kids her age based on her weight checks and her calorie counts. I've known this for awhile. Doctors and dietitians have told us a super high number of calories to give her. We tried, and she would projectile vomit because she was being overfed. So we didn't feed her as much despite what we were told. Everybody is different, and she just so happens to need fewer calories. We'll meet with the dietician again tomorrow but for tonight Polly instructed us to give Olive just water for her lunch blend to try to bring out that voracious hunger. So she received two ounces of breakfast blend tubed in the morning with nothing else tubed. She was running on the milk she drank and the small tastes she took. We hesitantly gave her four ounces of water in her tube before heading to the park this evening. The poor girl is obviously hungry. She was almost lethargic at the park just wanting to swing. It's hard to purposefully not give your child what you know they need, but this is the only way to get her eating. I'm 100% sure her empty belly turned her into a little zombie. But she doesn't know how to fix that with food. Instead she turns to milk. She drank nearly 9 ounces of milk after the park. What!? That's more than we even thought her tummy could hold at once.

Clutching her craft projects.

And then she did an amazing job at dinner. She modeled many of the skills that Polly has been trying to get her to do. It's reassuring to know that in a lower stress environment she's willing to try. We were laid back about it and let her do her thing. She bit down on her spoon and took bites of goat cheese, which is so awesome. And she happily placed Cheetos on her molars to practice chewing. She is such a turkey, refusing to do these things for Polly. She's really just a girl who does things on her own terms. And while that's an incredibly frustrating thing for us to deal with right now, it will serve her well in this unpredictable life.  A nurse told us when she was a few weeks old that she would hold her own on the playground. Yes you will baby girl. We're all energized for tomorrow. Olive is now like the energizer bunny after getting all those calories plus about half of her regular dinner blend. She is serenading Dain to "fweep" with her rendition of "Row Row Row Your Boat." Bring it on Wednesday.

Day Six

Another day in the books. Thankfully Olive woke up without a fever and feeling much better. She was still a little tired today, but it's hard to say what that is from, especially since the most common side effect of her appetite stimulant medicine is tiredness. We were just happy that whatever was bothering her yesterday didn't escalate. She was fairly cheerful throughout the day, only throwing fits when Polly was trying to get her to taste something she didn't want or take a bite when she was stressed out. Her new thing is to just scream at the top of her lungs and throw things on the floor when she has reached her limit with her feeding sessions with Polly. So that's fun.

Taking bites of bread.

Olive gagged in the parking ramp right when we arrived at UVA this morning. I grabbed her and ran over to look down the parking ramp at the train tracks. This distracted her enough that she didn't throw up. A good start to our Monday.  Before we arrived we followed the same plan from last week, which was to tube about an ounce of water and two ounces of Olive's typical breakfast blend along with her medicine. Once she got over her initial nerves, Olive settled in nicely to the play area saying good morning to Ms. Patty and heading for the legos to build a castle.

Working at the car wash.

This Monday did not go as well as last Monday. Olive wasn't very interested in tasting anything. She did a good job with her milk taking three ounces, but she was a hesitant taster. Polly had her try to swish lucky charms marshmallows around her mouth. She tried two. Polly couldn't get her to try a cereal bar or yogurt. She reluctantly took a few small tastes of peanut butter. It was kind of painful to watch. Just total disinterest.

After breakfast we had a few minutes in the play area before heading up to our preschool lesson with Ms. Crystal. Olive really enjoyed that today. They started with reading The Very Hungry Caterpillar complete with a plastic caterpillar for Olive to hold and use to play with along with the book. It was Olive's first time with that book, which is totally shocking since it is everywhere. We just don't have it. Of course she loved it so I think it will be on her Christmas list. After reading they did an animal puzzle and then colored. Then they washed cars at the carwash, which Olive thoroughly enjoyed. Crystal used shaving cream as soap, and Olive pretended to wash it off with the little hose on the car wash toy set. Then Olive got to play with the kitchen. She loved it. She served us food and washed food and washed dishes. Before we knew it, it was time to go.

Obstacle course with Ms. Jen.

Next on the agenda was snack with Polly. Olive drank four ounces of milk, but for her to do this takes work. She is asked to take the drinks, and Polly has to persuade her to do so. The winner today was a latches puzzle that she would play with while she drank her milk. She once again didn't do very well with food at snack. She took a few bites of goat cheese and licked some Cheetos. Polly is really trying to teach her to chew on her molars or her "big girl teeth" as Olive calls them, but this really scares O. She'll try once or twice, but then she gets frustrated. She also wants to do everything herself and not let Polly help place the food on those back teeth. So it is still a lot of biting with her front teeth and spitting out the pieces. Polly thinks that once Olive turns three she will hopefully be more open to letting us help and be better at following through with our directions.

Thankfully after snack came Ms. Jen. Olive was ecstatic. She bounded into the room skipping and jumping. First they did an obstacle course with mats and a trampoline. Then they moved on to another fishing puzzle and then stringing beads. The string was a lot smaller than O did last week and the beads were harder to get on, but she stuck with it. Then we did bubbles, which was a great activity for Olive because she got to use her mouth to try to blow the bubbles from wands and various bubble toys. She happily put the unfamiliar bubble toys in her mouth of course unlike food. It was a good oral motor skill activity though, and Olive loved it. They ended with playing with cars before we had to drag Olive away promising to come back tomorrow. We made a very quick lunch run for ourselves and then met Polly back in the kitchen for Olive's lunch.

Bubbles.

Olive did a better job with lunch. She is obviously hungry. She says "I hungry," and while we were out grabbing lunch she told me "Obbie tummy make noise mommy." I think it was grumbling. A new sensation for her. She's trying to grasp that the food will make her tummy feel better, but she just doesn't understand. When we tell her the food will go to her tummy, she lifts up her shirt and tries to put food into her tube. Polly told us that around age four kids start to realize that other people don't have tubes, and they start to want to get rid of it. Let us hope. My goal is for her to be tube free before kindergarten.

For lunch Olive drank her milk again, and she did a good job biting bread. She also took a few sizable bites of goat cheese and some spoonfuls of pickle milk (greek yogurt mixed with pickle juice.) She also tasted chicken noodle soup and even drank some with a straw. She also had a major attitude once she reached her end. It's like she's starving, but she a) doesn't know how to fix that problem and b) is too scared to try even with someone directing her. Polly also thought that she may be so hungry that she felt nauseated. So really all we can do is work on these skills, improve upon them over time, and wait for Olive to get it. It's going to be a long road.

It doesn't come easy.

After lunch we headed to the day suite where Olive took another two ounces of milk from her bottle and then napped for a little over an hour. She played in the play area for a little while before our last snack with Polly for the day. At snack she did a great job of taking a couple bites of cheetos on her back molars. She also took some big tastes of pickle milk off of her spoon. She took more bites of bread, but she wasn't open to it as soon as Polly put peanut butter on it. She threw it on the floor. Polly had to throw down the threat of mommy and daddy leaving. Although I think O is more open to that than she was last week. They moved on with tasting Nutella. Olive took some tentative licks. She did drink four ounces of milk though so that is good calories in. Polly had us tube less than half of her normal lunch blend. Luckily her weight is up from when we arrived. We had another weigh in today. She weighs in at a whopping 10.65 kilos (about 23 1/2 pounds.)

Already training for the President's Fitness Challenge.

After snack we headed back to the hotel to relax. We found a park near the hotel that we thought we could walk to as it was a warm sunny day. We loaded Olive in the stroller for our .8 mile trek following Google Maps. It went great until we realized that we would either have to cross a creek or walk on the side of a highway. Admittedly it did say "use caution." So that was a bust. We drove. But Olive had a great time. And now we are just chilling in the hotel room after a much needed bath on Olive's part. Hopefully Olive will do a good job eating and drinking for us tonight.

The safety totter at Azalea Park.

Weekend Days

Spreadsheet for Olive's daily intake.

Well we've had the past two days on our own. It didn't go as smooth as we had hoped. Saturday morning was great and then it deteriorated. Olive did a great job with drinking milk yesterday. She drank almost 22 ounces, which is awesome. But she had pretty much no interest in eating food with Dain and I at the helm. Polly told us to keep it light and positive and just offer her what we were having, but she wasn't very interested throughout the day. It is especially difficult to keep her focused at the table in our hotel room because we don't have a chair to strap her in to. So she is basically up and down, sitting on my lap, running across the room, and up again. You get the idea. She is a whirling dervish of motion and when there are so many other things to do (like turn her spoons into boats and float them across the table) she has no interest in eating. So it's really frustrating. Luckily yesterday she took enough milk that we didn't have to tube too much. I kept track of everything on a spread sheet from Polly so we had a baseline idea of calories in.

It is very stressful to be in charge of it all on our own. Obviously we will be the ones doing it long term so we need to get used to it, but when you're already exhausted, it's tough. It was going fairly well up until late afternoon yesterday. We tried a three quarter dose of her medicine, and she woke up from her nap in a fury. Grumpy and whiney and not at all cooperative. Then we tubed water, and she immediately threw up as I unhooked her extension tube. We were just doing what we normally do, but we didn't properly take into account that she had consumed milk orally a short while before. Obviously it made her tummy full so it was too soon to tube something else. That was the beginning.

Family selfie in the Rite Aid parking lot.

Then she took a bath and started to drink bath water. I told her no, but she kept sneakily doing it. Then she started to say "tummy" and look like she was going to throw up again. We avoided it by distracting her with a literal song and dance. She seemed ok for awhile after so we decided to go out to dinner. We obviously didn't think it through. She threw up in the car. It was a whole lot of hot mess to clean up in a random Rite Aid parking lot. We are so nonplussed by it at this point, but we did get a few sideways glances with our naked toddler trying to escape while I cleaned vomit off of her. But we cleaned Olive, put on fresh clothes, and cleaned the car as good as we can. We always travel with paper towels and extra wipes and bags for dirty clothes. You mostly can never have enough of those items.

Olive is also totally unaffected by her vomiting. She moves on like it never happened. She had a time of it playing in the car while we cleaned up. We still went to dinner, and she actually did a great job eating for the first time all day. Probably because she was actually really hungry. She drank three ounces of milk, and she tasted all kinds of things like crackers, pickles, chicken fingers, fries, and pasta. She did the best job with bread that we slathered with an ungodly amount of butter. Calories in. So that was nice to see. Then we hit the hotel for a good night's sleep.

Just drinking milk in her new favorite hangout.

Unfortunately Sunday didn't go well at all. Olive seemed a little tired in the morning. She drank three ounces of milk, but she wanted nothing to do with her food. She took a few very small licks of yogurt and Nutella, but it was like pulling teeth. Then she refused to taste anything for snack or lunch. On top of that she started to have loose stools while we were at the national park. So that wasn't fun for anyone involved. We ended up tubing a snack of bananas, which is easy on the tummy. She slept in the car, and she didn't want any milk when she woke up. We also noticed a very slight fever of 99 degrees. So she obviously doesn't feel well today. This didn't stop her from refusing a nap at the hotel of course. We went to the park to get her some fresh air, and we tubed her full lunch there as she didn't want any milk or anything to eat. She had a great time at the park and seemed to perk up. We decided to just give her a break tonight, and we planned to tube her whole dinner with her usual 60 ml of water first to keep her hydrated. Of course right after we gave her the water, she asked for milk and drank two ounces. So that left us with the conundrum of how much dinner to tube. We think Polly would say to just subtract the amount of milk so we went with 95 instead of her regular 145. But we are debating whether she needs anything else after she goes to bed. It's a lot of math for two not at all mathematically inclined people.

Push carousel on the downtown mall.

So that sums up her eating weekend. Pretty good Saturday and horrible Sunday. We really hope she isn't getting sick. She's done this before a few times where it is just a day long thing so we are praying that's what it is. Because it would be devastating if we had to miss out on the feeding clinic for any amount of time this week. We are heading to bed early in hopes that a good night's sleep will cure whatever is ailing Miss Olive. In happier news, we did some fun stuff this weekend. We really got out there and saw Charlottesville and the surrounding area.

Saturday morning we hit the farmers' market downtown and then walked along the pedestrian mall. It was a great time. We had donuts and a brat at the market. Olive even asked to taste the strawberry glazed donut, and she did. As a total aside, Dain and I have pretty much both gained ten pounds from stress, exhaustion, our hectic schedule, and eating all the things we see. It's like the feeding clinic 15. Oh well. The pedestrian mall was really neat. It's a closed off street for pedestrians only with shops and restaurants and water fountains and other fun attractions. Olive's favorite was hands down this push carousel we found. She could have ridden it all day.

We also stopped in a toy store where Olive picked out unicorn stickers, and there was a great art installation where you can draw with chalk on a slate wall. She jumped right in with the college kids and put her scribbles on the wall.  Olive also enjoyed stopping to see a group of people playing drums outside a coffee shop. She was dancing to the beat. After all that activity, we drove to another apple orchard, Chiles. This one was much less crowded. We picked our own apples, and Olive loved riding in the wagon.  We didn't stay for too long since we wanted to sit down for lunch back at the hotel and then get in a good nap. After lunch and nap, we hung out at the hotel. Olive took a forty five minute bath having a time of it with her toys and her plastic cup boats.We only ventured back out for a quick dinner at TipTop, rated Charlottesville's number one family friendly restaurant. It was like a diner, with affordable prices and fast service. Perfect for dining with a two year old.

Living the life at Chiles Orchard.

Today we decided that we really couldn't be this close to the Appalachian Trail and not hike a piece of it. It's truly one of America's great adventures for those crazy and awesome enough to attempt the whole 2,180 mile trek from Georgia to Maine. It crosses through 14 states. I of course sometimes overly romanticize things and was truly hoping to encounter one of those wild and wooly adventurers and ask them about it. Of course we didn't. It was mostly just tourists like ourselves looking for a short hike on the A.T. We didn't really have any other options with a two year old and without our Deuter backpack from home that we carry O in for hiking. Such is life. We hiked it. That whole mile. And we made it to Black Rock Summit.

The trail we hiked was in Shenandoah National Park, which was only about a twenty five minute drive from our hotel. The whole place was gorgeous. Skyline drive runs through the entire park, and it is literally a beautiful scenic overlook every half mile. It was a fabulous fall drive and short hike. We didn't realize how large the park was and were surprised that the official visitor center was 55 miles in from where we entered. Luckily the park ranger at the gate gave us maps of nearby hikes within the first 20 miles or so of our drive. After we officially hit the A.T., we stopped inside the park at a wayside rest with a restaurant and gift shop for lunch before heading back to the hotel. Olive slept the whole way back, making it hard to get her down for another nap an hour later for her regular nap time. It's hard to stick to a consistent schedule when you're not at home, but we had such a great time. The only other thing we did tonight was grab a Halloween costume for Olive for half off at Kmart and some dinner to eat back at the hotel. And laundry, necessitated by yesterday's events.

Olive chose to be a pumpkin. We honestly tried to steer her towards something else (world's cutest Clownfish?) but she stuck to her original idea all last week. We're pretty sure she picked it because she heard a woman at the hospital who brings her guide dog with her every day telling us that the dog was going to be a pumpkin for Halloween. But hey, a pumpkin is a solid costume choice for a toddler so we rolled with it. Thankfully Kmart had one. Done and done. We tried Walmart first. We didn't find a pumpkin costume but did get to hear one woman yell at the top of her lungs "I'm so fucking ready to go" and saw another woman smack her young child. So that happened. God bless 'Merica. Olive's first trip to Walmart was probably her last for awhile. We are just spoiled at home having a Target we can walk to.

A little jaunt on the Appalachian Trail.

At the end of the day, the weekend was ok. It could have been better, but I suppose it could have been worse. At least she didn't throw up today. That's a small win. Hopefully she will wake up ready to go, and we will hit it hard again with Ms. Polly.

Day Five

Taking a dolphin ride at Pen Park.

Happy Friday. We survived our first week of feeding school. After a trying day yesterday, we had a much better evening. Olive took a three hour nap and woke up a new woman. We ended up going to a great park and made a Target run, being sure to stop to look at the bikes there since that is Olive's favorite thing to see. Snack on our own yesterday afternoon went ok. It was a struggle to get her to take three ounces of milk since she has figured out how to blow bubbles. I realize that's a totally normal thing developmentally, but it is hard to remain patient when you're having a battle over bubbles with a two year old on every single sip of milk.  She did tastes of hummus and goat cheese as well as bites of cheetos.

Dinner on our own went slightly better because in the car after Target she asked for milk and drank three ounces of milk on her own from her little bottle while we were driving back to our hotel. So that was a relief that she already had those calories in, which meant there wasn't pressure to get her to drink as much with dinner. She enjoyed a few big licks of chive cream cheese and did a great job of working on having fruit snacks in her mouth. After she fell asleep we surreptitiously gave her two ounces of water in her tube too because hydration is key in avoiding constipation, which is a common problem when trying to wean tube feeds.

The legos in the car are two people going to the coffee shop.

We've been adjusting what we've been giving Olive by tube based on what she is taking orally. Polly keeps track of everything Olive gets orally and then directs us what to give her as a supplement in her tube. We've really been tubing very little, with less than half of her normal breakfast and lunch with her dinner amount remaining the same. It's been odd to not tube feed Olive really between the hours of 8-4, but her weight was up today so she seems to be getting adequate calories thus far. The ironic part is that both Dain and I agree that tube feeding is actually way easier than what we are doing...keeping track of Olive's hydration, nutrition, oral intake and weight while cutting tube feeds and working 5 times a day to get Olive to eat with her mouth and then still tube feeding some amount. It's exhausting. But after 17 sessions this week with Polly, we are proud of Olive's progress.

Today Polly had a conflict in the morning so we did breakfast on our own at the hotel. It was nice to not have to wake Olive up and rush to UVA. Instead we let Olive sleep until she naturally woke up and then did our routine of tubing water and two ounces of her typical breakfast with a half dose of her medicine and then sitting her down at the table to drink milk and work on eating. She managed to take three ounces of milk despite the bubble battle and did a good job licking Nutella and some yogurt. She also worked again on biting pieces of fruit loops.  Since Crystal, the preschool teacher, had a work day we didn't need to be at UVA until 10:30. We got there a little early to let Olive play though because she seriously loves the play area. She goes on and on about the train table and loves the legos making towers and castles and parking lots.

Licking all the flavor off of a pretzel cracker.

Snack went so much better than yesterday. Olive was cooperative and cheerful. She took another three ounces of milk and surprised us with taking small bites of Ritz crackers. Her instinct is still to get the crumbs out of her mouth as fast as she can, but with some prodding she will try to chew and swallow some pieces. It just doesn't come easy or naturally for her. She also actually enjoyed some key lime yogurt, wanting to take more tastes without being instructed to. Polly told us today that Olive's oral skills are about at the level of a nine month old so we obviously have a lot of work to do with her skill set and confidence in eating. She also doesn't really understand that the food she puts in her mouth goes to her tummy. Polly keeps telling her this and that it makes her belly feel better, which prompts Olive to lift up her shirt and look at her tummy as if she is going to be able to see the food going in like she can with her tube food. She in fact calls her tube fed food "tummy food" so now she just needs to learn that food in her mouth is tummy food too.

After snack we took a nice walk around campus because unfortunately Ms. Jen was out today. Olive was disappointed by this news, but that didn't stop her from talking about Ms. Jen throughout the day. It was actually nice to get out and have time to walk around campus. Olive asked for milk when we stopped at a coffee shop, and she drank another nearly three ounces out of her small bottle there and on our walk. It is nice to see her asking for milk on her own as she is obviously starting to make some kind of connection about thirst and/or hunger. Next on the agenda was lunch. Olive didn't drink too much milk since she had consumed so much on our walk, but she did a great job exploring food. She had some good licks of garlic cheese spread and guacamole along with Ritz crackers. Polly is trying to get Olive to use her back molars to eat as Olive's instinct is to bite with her front teeth, pushing the food into the middle of her tongue where she doesn't know how to move it around. For lunch Olive practiced chewing on her molars with tootsie rolls and slim jims.

Stepping into a slim jim.

After lunch we went to the day suite to give Olive a nap. She took another nearly three ounces before nap, and we gave her another half dose of her appetite stimulant medicine. She took about an hour long nap before she heard kids yelling and sat up asking to go play at the train table. Ironically today we could have let her sleep longer as Polly had a freer afternoon schedule, but it all worked with Olive having a chance to play with the toys again. She did a decent job at snack too. She took more bites of crackers and meltable popcorn, and she is really close to closing her mouth around a spoon full of food and taking a bite. She can do it with an empty spoon, but with food on it, she gets nervous. We'll continue to try to work on that small step in hopes that she can start to take more volume by mouth.

Then we made a game plan for the weekend. It's a little daunting to be on our own, but Polly will also be available by phone. She instructed us to try and replicate what we've been doing this past week and to write down everything Olive gets by mouth and tube. The hard part is that we will have to make the judgment call on how much to tube feed in addition to whatever she takes, and she will be weighed again on Monday. The weight checks remain a constant because at less than the first percentile for weight Olive really doesn't have too much weight to lose. So there needs to be a balance between letting her feel hunger and still providing her with enough calories that she at least can sustain herself. It's complicated, but we are thankful to be working with such an experienced therapist like Polly. She really knows her stuff and is just incredible with Olive. So we will give it our best try this weekend, knowing that it may be a struggle at times.

Enjoying her milk at band practice.

After snack, we came back to the hotel for a short break and we tubed a little over half of Olive's normal tube meal. Then we hit the crowded town. It is homecoming weekend at UVA, and UNC is in town for the football game tomorrow. So it is basically a traffic nightmare around here. We kind of knew this, but it didn't stop us from going with our planned activity. Being the tourist I am, I have been reading the events on the Charlottesville tourism website, and I knew our Friday night activity the moment I read it. Marching band practice? Obviously. Olive loves marching bands. We waded through the traffic jams and ended up parking a good distance away because of the craziness. But we hoofed it over to the practice field and had a great time watching the band practice. Olive loved it. We did too. We brought a blanket and had a snack, and it was a near perfect family Friday night. They don't really compare to the UW band of course, but it was a fun time. Olive even drank nearly four ounces of milk while we there and tried some hummus and fruit snacks. We couldn't stay for all of it, but it was worth the hassle of getting there and back to see Olive's reaction to it. She of course wanted more.

Clutching her fruit snacks as the band plays on.

We grabbed dinner for ourselves and came back to the hotel to sit down to dinner with Olive. She took another ounce and a half of milk, and she tasted some pretzel crackers and onion dip. Then she was pretty much ready for bed after a long day. We aren't quite sure what our plans will be for the weekend. We may venture to the farmers' market tomorrow or another orchard, but it'll be nice to have two days without a rigid schedule. And thankfully Olive was back to her normal self today. We may try a three quarter dose of her medicine tomorrow in hopes that her body may be more used to it now and will tolerate it without the wild side effects from yesterday.  But Polly mentioned today that she didn't see Olive on it for more than a month or two. Overall today was a redeeming day after yesterday, and we always remind ourselves that it always gets better. Sometimes it just gets worse for a little bit before the better part comes.