Day 3: Camp Nom Nom

Day 3 of 30

Elasticity: n. - The condition or property of being flexible

Astonish: v. - to strike with sudden and usually great wonder or surprise 

"What's Olivia like?" is a question I get a lot. I usually describe her as smart and a thinker, but very particular. She likes things a certain way. One might call that characteristic trait as rigid or stubborn. I've heard other therapists say that kids with eating issues are stubborn fighters. Taking her to Dallas has certainly taught me a lot about my own child. Today she's shown that she has the capacity to learn and apply things. She's learned about adapting to her surroundings, responding to structure, coping without mom in the room. Kids really learn these things fast. It's adults who are rigid in their own mind and assign that limitation to their children. I know I'm certainly still not comfortable here, but Olivia, she's fine with it. She can find a door stopper as a toy and smile.

She had a much better night, only waking 1-2 times, and one of those involved spit up, but otherwise she slept so well, she had to be dragged from her warm nest for feeding, which she rolled with. During feeding, she took dry spoonfuls well, while watching videos and had a toy. She only had to have those motivators taken away before doing as directed, without extra fuss. She even took spoonfuls of yogurt. She spit out a few, but those were redirected in and swallowed. She played with food during speech and occupational therapy and was happy to do so. Each feeding session she took more and more food and water. Our therapists keep saying, "She did great! Really getting what we're doing and is cooperating a ton." After each session, she wanted to go back into the feeding room with the tech and kept saying "more" and making the sign for it. 

She's having a lot of fun here with all the other kids and everyone saying hello to her. There was even a pair of old guys with guitars who sang kid songs and invited everyone to join in. She was a bit unsure at first but then was dancing and throwing her egg shaker around, just like all the other kids. 

Food log:
2/19
Session 1: 0g
Session 2: 0g
Session 3: 0g
Session 4: 2g

2/20
Session 1: 4g
Session 2: 4g
Session 3: 7g
Session 4: 7g 

Water:
2/19
Session 1: 0g
Session 2: 0g
Session 3: 0g
Session 4: 2g

2/20
Session 1: 4g
Session 2: 2g
Session 3: 6g
Session 4: 12g


The data doesn't lie and I'm totally gobsmacked.

Day 2: Camp Nom Nom

Day 2 of 30

Our first real day of therapy! Her new schedule consists of taking more milk at a higher concentration at night and less in the day time to ensure she'd be hungry for food during her feeding times. They also changed her nap schedule and make her eat by mouth all the time. Kids do NOT like change at this age. So, of course Olivia woke up on the wrong side of the bed, and so did I. We had a rough first night adjusting to a new place. She tossed and turned all night, so of course, I had to get up a lot to readjust and soothe.
 

Her crib/cage with anti-climbing bubble

First up: a feeding session without mom. They have special rooms to feed the kids, stocked with toys and videos, as well as a one way mirror. Parents can observe through another room, but the program recommends that we don't watch for the first week or so. After the first session, I could understand why. I could hear her scream and scream from the hallways and I don't think I could have beared watching it, too. As it was, I was close to losing it and wanted to tell her it was ok. When she came out, she had red eyes but was fine as soon as she was put in my arms. So mommy wasn't the bad guy for abandoning her. Whew!

Then she had occupational therapy, which is just playtime. There, she had a ball. No, literally, she had a ball which she wouldn't let go. She also played with sand, shaving cream, drew with crayons, and a whole bunch of toys. And guess what? She didn't have to share with Sophia! In speech therapy, she cried less and actually played with pureed pears, but didn't eat any. That's what she normally does at home, so we are seeing her true patterns now.

Her next two feeds were much better: She actually let the feeding tech put a dry spoon in her mouth after 5-8 minutes of whining, pouting, fake crying/coughing. The trick was for the tech to play with a toy and if she wanted to play, she had to take a bite. Kids with feeding issues are obviously not food-motivated, so we can't bribe with yummy sweets or fun snacks. Oh my, did she learn fast. Because her last meal of the day, she tried sugar instead of salt - she tried smiling her way to get the toy instead. She ended up graduating up to taking a few dips of applesauce - 2 whole grams!

After dinner, she got to play with other kids and mess up their game of Candyland. She's starting to settle in and recognize the people around here. Olivia loves walking around the place and people watching. We'd taken a self-tour of the place and she likes all the bright colors, but especially all the murals of hot air balloons, which she calls "bubble." It's her new word.

What a successful first day! We had the full spectrum of tantrums to smiles. Great start to the program. Let's just keep the momentum going.

Day 1: Camp Nom Nom

Day 1 of 30

We are in Dallas, TX at Our Children's House at Baylor. It's a pediatric facility that helps kids with trauma and birth disorders. They have a special intensive feeding program where kids are admitted in with the sole purpose of learning to eat, despite difficulties life has thrown at them. Olivia is such a kid. She's had severe GERD (reflux) her whole life and it just won't seem to go away. With all that throwing up, she's not so interested in eating. Who eats when they are nauseous and spilling their guts EVERY day, several times a day? Well, not this kid! She's diagnosed with "oral aversion" to food - any kind at all.

So she's been on the G-tube for 8+ months now, getting milk pumped directly into her stomach. That's no way to live. So she has been enrolled into the inpatient program, with hopes that she will come out of the hospital eating some food and can wean off the tube. I am staying with her and Denver and Sophie will come up on weekends.

Grandma buying me a "friend" at Bucee's

Today, we arrived at BOOT CAMP for orientation. We brought Sophie and Grandma for moral support. It was a whole bunch of nurses, speech therapists, doctors, occupational therapists, nutritionists and feeding techs talking at us about what would happen. We got assigned a room (with no bed for mama), told to use a shared toilet and communal bath (eeps!), and then spent the rest of the day being told how they were changing everything about her eating.

The program is intensive for a reason: they make kids do the ONE thing they hate: eat. All these kiddos are on tubes and they like it that way. Less work and less pain (for them). Boot camp says they eat 4 times a day and go to 2-3 therapy sessions. To us, that's pretty demanding for a week, nevermind a day. It's basically wake up (early), eat, therapy, eat, nap, eat, therapy, eat, bath, go to sleep. Oh, the buckets of tears that will be shed! And Olivia has nothing if she doesn't have crocodile tears.

Playing in the new bed before being separated

Today was just evaluation and getting stuff set up. They watched us feed her two times and made notes, or as I suspect, judgements on how we're doing it wrong. Here are a few things I can share about the experience so far:

- Communal bath sucks. We have requested to move rooms as soon as one becomes available.
- Lots of kids have it worse than us. She doesn't have a whole slew of medical/developmental issues, too.
- So many toys and play times! Sophie is gonna wish she had an eating problem.
- Kids are messy and dirty. Lots of kids mean everything is just gross. No matter that it's a hospital; it's always dirty.
- We miss our other half of the family. Denver and Sophie left and Olivia tried to follow and cried when she couldn't. So did I.
- A hospital provides beds and linens, but it ain't no hotel!

Naptime

Sandra catching up on sleep in the playroom while the girls are playing.

Hip baby

You might remember that I let Olivia watch Baby Einstein videos next to me sometimes while I catch a few more precious minutes of sleep.

Well this morning she was found watching Harlem Shakes videos online. I don't know how she even navigated to it. I mean, sometimes when you ask her to point to her nose, she's off the mark.

And you know what? I've never seen a Harlem Shakes video before.

My baby is cooler than ME.

Spying on daddy/daughter time

Ever wonder how your husband and kids interact without you? One night I decided to furtively look in on Denver and the twins in the playroom. Denver is trying to eat dinner and Sophie is after his food. Here are a few snippets:

- Eww, you smooshed the noodle!
- Gosh, Sophie! Ok, Hold on... No, no, don't touch!
- You're leaving a trail of noodles.
- Geez, I gave her a big bite and she spat the whole mouthful out into my bowl and asked for more.
- Ok, ok, ok now YOU want some? (Olivia)
- Hug daddy, yeah! Hug Olivia, yeah. Wait, no no no! (I assume some kind of biting attempt)
- Argh! (She was working on a piece of beef and couldn't break it down so she spat it on him.)
- Oh sorry, Olivia! Dropped congee on your head. That's what you get when you sit in daddy's lap when he's eating.
- Hey, hey, hey! That was almost a humongous mess. Ok, I think I'm just gonna let them watch Baby Einstein.

Twins - 34,964, Daddy - 0. Baby Einstein — always the backup babysitter or when you've had enough.

Day 11: Camp Nom Nom

Day 11 of 30

Grandma is coming to visit camp today! Olivia loves Grandma, so this is exciting. She stayed at the Ronald McDonald House in Dallas last night, which is just for families with kids in the hospital. I've seen those Ronald McDonald charity boxes in McDonalds all my life but paid little attention to it. After having kids in the hospital, I see just how many people have a heart to help us. Meals, snacks, baby food, toiletries, are just a few of the kinds of things donated. Grandma not only had a hotel-worthy room, but got three cooked-from-scratch meals. Dallas' House was particularly nice because it's brand new and modeled to look like a rustic ski lodge. It has playgrounds, meditation rooms, family kitchens, grills, huge yards, and laundry rooms. They try to think of every little comfort a family could have to ease the burden of being so far from home while a child is in the hospital. We're blessed that they had room for us, since they fill up all the time.

Great Room at RMH

Kitchen/eating area

We got another package today in the mail. This one is from Vicky, Ben and Fifi. It was a soft bunny for O and a manicure set for me! Could it be more perfect? Thank you guys for thinking of us and  knowing just what to get us!

Today was a strange eating day. She started out strong and then started decreasing in volume. By 2pm snack time, she was exhibiting some strange behaviors of refusing and acting out, especially with the Pediasure. She didn't want to sip it out of the cup for some reason. Then for dinner, she flat-out refused to drink Pediasure. Since the program is structured so that you don't move on to anything else until you take what's offered first, it became a testament of wills. In the 25 minute session, I think I started to get nervous around the 6 minute mark and it just got worse from there. When the meal was over, she was in a bad mood from not getting to watch any of her show. I was bewildered that she could eat so well in the morning to nothing at night. Our feeding tech says this was a "learning meal" when she learns that her holding out leads to no reaction on their part. Let's hope she's right.

Food log:

2/28
Session 1: 48g
Session 2: 32g
Session 3: 29g
Session 4: 0g

Liquids log:
2/26
Session 1: 48g
Session 2: 23g
Session 3: 27g
Session 4: 0g