Day 8: Camp Nom Nom

Day 8 of 30

It's Monday. Hard to function and get back into it all. Weekends are slow here at Our Children's House. And by slow, I mean that there's fewer people around and we have a less rigorous schedule. But by no means is it quiet. Oh, no. Not with all the visiting families. There's another family with twins and from Houston, but only one of the twins is here. We've connected right away, as you need to, since other families are the ones that truly understand you. However, the parallels between our families are eerie. Our identical twin girls are Sophia and Olivia, theirs are Sofia and Aliyah. Of course we both have one of them on the G-tube, since we're both here, but the "healthy" one have similar personalities - somewhat diva, carefree and slightly neglected. Since we are the same age, the dad, Ben, went to Stafford High School and knows a lot of people from Dulles. Both moms worked in ministry before the twins. I feel like the only difference is that they have a 5-yr-old son, too. It's a little eerie, but I just like to say that God has finally crossed the parallel paths and it's for good reason. We've already arranged for playdates once we get back to Houston.

So Monday. Olivia took a little dip in volume over the weekend but Monday morning she was ready to go! She ate a BIG breakfast and was super happy to have her regular feeders again. She is definitely taking more in and wants to eat outside of the feeding room. She points to whatever I am eating and says "mooo!" I take that to mean "more" and to feed her. Boot camp only allows her water between meals and anything she wants after dinner. She always wants to partake in my dinner, so I usually give her soup with nothing chunky and she takes several spoonfuls. Can I be a happier mommy?

Today they had a chef come in and make cake pops with the kids. Not just any cake pops, Elmo and Cookie Monster ones. Of course I can make cake pops anytime but when it's all ready for me... why not? Well, Olivia wasn't too interested except in the frosting, which she licked (!) and throwing the candy on the floor. I attempted to make it, but now I know why I only trust myself to make it from beginning to end. The cake ball completely fell apart as I was spreading the frosting, and it would have been an instant toss-out if I was at home. I went ahead and made them, for no reason but to have proof we did something fun... I hope none of my baking buddies see this! Knowing me, I'll go home and make some proper Elmo and Cookie Monster cake pops. 

God has shown us an amazing amount of grace. Not that I've ever doubted that He's given us anything but blessings, but I've seen some of what other people have to go through and I get hit by how much mercy He extends to us. I've been so amazed by what Olivia can do and if she was any different, I'd never see how wondrous a gift she's been. And it makes me appreciate Sophie more, too. She's a beautiful, healthy, albeit spoiled, child. I miss my Sophie.

Food log:
2/25
Session 1: 45g (!!)
Session 2: 30g
Session 3: 32g
Session 4: 31g

Liquids log:
2/25
Session 1: 15g
Session 2: 10g
Session 3: 10g
Session 4: 27g

Day 7: Camp Nom Nom

Day 7 of 30

Good morning!

I got to spend the night with Olivia while Sandra and grandma are at a hotel with Sophie. They had a huge breakfast at the hotel, complete with omelet and waffle stations. Sophia had so much fun eating a little of everything. You know it's good because she nods her head while she's eating. Olivia had fun waking up with me - we played for a bit, just like at home. As you can see, I have no idea how to fix her hair. I've attempted it many times, but it never looks as nice as the pigtails mommy or grandma gives them.

What I've noticed this past weekend is that Olivia has really made herself at home here. Usually whenever we take the girls to an unfamiliar place they always cling to us and treat anyone that approaches them with "stranger danger". She loves to roam the halls with a mischievous grin on her face, wave at anyone she sees and even enter other kids' rooms to explore. Luckily, all the parents there really like Olivia so they don’t mind. And so do all the therapists - they fight to see who gets to feed her. Having to be so far from her during these four weeks, it makes me really happy to see how comfortable and loved she is at OCH.

Eating-wise, she's been doing well - taking her bites and drink without spitting out too much. However, she just loves loves loves her weekday feeding tech and therapist, and the weekend ones just aren't the same. As a result, her volume isn't as high, but are by no means low. We've been assured that this is a common trend here. Since I can't take any of these therapists home with me, I guess I better get used to having other people feed her. It's just frustrating when I think "give her a different toy and she'll take a bite." Because that's what motivates her.

We were so sad to say goodbye to family. It was so good to see them. I think I was more reluctant to leave my baby girl than anyone. I got to see her eat enthusiastically, walk around with a smile on her face, and she kissed me. How can we wait five whole days?? Going to bed with happy memories and just a bit sad.

Food log:
2/24
Session 1: 13g
Session 2: 16g
Session 3: 16g
Session 4: 19g

Liquids log:
2/24
Session 1: 14g
Session 2: 14g
Session 3: 20g
Session 4: 25g

Day 6: Camp Nom Nom

So this past week, Sandra and I got a taste of being single parents. This would be the longest that Olivia and Sophie have been separated since birth. For some reason, raising 1 child alone felt easier than raising 2 children with 2 parents - at least physically. Mentally, it was much harder both for us and the kids. Leaving Sandra and Olivia at the end of every weekend have been really tough. Throughout the week, Sophie would go into our room and look for Sandra and Olivia and keep making the "nothing/no more" hand sign that she knows and then proceed to play in Olivia's bed by herself. Once I get home from work, we would literally be attached at the hip until she went to bed, since her other half wasn’t here to play (or in most cases, fight) with her. Luckily these days, technology has allowed us start a new nightly tradition: video chat.

Sophie has also made a new friend - Buc-ee, who she visits twice a week (once on the way there and once on the way back). Each time we go, she picks out a new toy from the kids section. This week's pick was a psychedelic stuffed monkey. Grandma couldn’t help herself when she saw Sophie pick it up, give the monkey a kiss, and wouldn’t let go.

Today was also the first time I got to observe Olivia in the feeding program. For those who have not seen us attempt to feed Olivia, this is how it typically goes more or less:  We approach her with a dry spoon, she opens her mouth for it and accepts it. We approach her with a spoon dipped in water, she takes that too. We approach her with a spoon lightly dipped in applesauce or yogurt, she accepts it and processes it in her mouth, occasionally spitting it out. We go for a slightly bigger spoonful, she tries it, then refuses all subsequent spoons regardless of what is on it. Total amount eaten < 5g.
Here is a clip from one of the sessions I got to observe:

This is only day 6 of 30 in the program. I am utterly speechless at the progress she's made so far, except praise to God and being thankful to have found such a program.

Food log:
2/23
Session 1: 14g
Session 2: 14g
Session 3: 15g
Session 4: 8g

Liquids log:
2/23
Session 1: 8g
Session 2: 12g
Session 3: 12g
Session 4: 9g

Day 5: Camp Nom Nom

Day 5 of 30

Lots of things happened today for Olivia. Many of them really shook me and my ideas of doing the right things for her. I've read somewhere that for special needs kids (all kids, really, but not as apparently) the experts in what is best for your kid is really you and those who know her best, not doctors, nurses or those who "research the disease." They wanted to try this or that for her, and all we are to do is report the symptoms back to them. It makes me feel powerless when I feel that something else should be done.

Someone once told me that kids intuitively know what is good for them and will tolerate some things even though it isn't comfortable. The inverse of that is true too. When kids know they can't deal with something they do everything to get out of the situation. I sat with the nutritionist to express a concern with her tube feeds, and found that a lot of things I held as absolutes were challenged.

Misconception #1: I thought that if we added more calories per oz to her feed, she would throw up more often because she couldn't process the extra calories.

Reality: Well, not only does she tolerate the extra calories, there's less throwing up

Misconception #2: At home she gets 5 oz of (regular) Pediasure every 3 hours, 5x a day and a slow one at night. Here, she only gets 2 oz of (concentrated) Pediasure every 3 hours, 4x a day and a long, slow one at night. Even with the extra calories and what she takes by mouth, the volume seemed low. 

Reality: It turns out, we've been overfeeding her. That's so outside my box, I just stared at the woman. Her caloric needs to grow were far lower than what we were giving. I didn't even know there was a such thing as too many calories. Also, the amount of Pediasure was taking up too much cubic space in her poor little tummy, so no wonder she throws up ounces at a time. And we thought we had to overfeed her a bit to compensate for the throwing up. Do you know how much guilt is associated with not getting in all the milk into her system? Only to find out that it was completely unnecessary.

Misconception #3: Her progress in eating is slow. It's always two steps forward, one step back.

Reality: Today, she ate more than ever. The volume of food is amazing to me, but the conditions in which she DID eat makes me wonder what I know. Warning: This may be TMI to some! She has had some problems...let's call it backed up pipes. My other bunny won't eat at all when she's backed up and is trying to, uh, dislodge it. She was straining until she was red in the face and after each attempt, she took another bite. What a champ!

Food log:
2/22
Session 1: 25g
Session 2: 22g
Session 3: 15g
Session 4: 21g

Liquids log:
2/22
Session 1: 10g
Session 2: 4g
Session 3: 6g
Session 4: 4g

Day 4: Camp Nom Nom

Day 4 of 30

Dear Daddy and Sophie,

"Bubble" -O

Camp is great. I have lots of toys to play with (more fun ones than the ones at home, Sophie, so ha-ha!) and I go outside and play ALL the time. There are all these people who make funny faces at me and I laugh because they look so dumb. I have to eat a lot of times, but it hardly feels like any work because they let me watch Yo Gabba Gabba and Baby Einstein when I take a bite or drink water. Suckers! They also clap their hands when I play with toys or get pudding everywhere. Double suckers!! I also don't throw up so much and I feel great! It makes me want to spin and dance all the time. Only thing is I miss Cody. Oh, and you guys, too.

Love,
Olivia


Another good day for O. She ate all her bites and drank a lot. They tried something new during speech therapy and gave her milk instead of water. And chicken dumplings puree instead of yogurt or applesauce. It was still relatively successful! She kind of looked at it like "where's my usual?" but still ate it in the end. She did throw up some but it was completely unrelated to food. She woke up and saw I wasn't there in the room and cried til she threw up. But it made me realize that she hasn't been gagging at the amount of food in her mouth. She's been taking bigger and bigger bites of food, starting from a small dip to gradual covering of the spoon. I think the most I saw her take today was almost half a spoonful. That's a huge improvement from her behavior at home where even a dry spoon fully in her mouth could make her gag. Now I understand she been playing me. And taking complete control of feeding.

I love that she is eating. And so willingly. But it's not like we haven't tried some of those techniques before. Why does she act so differently with me? Why didn't I have the success that these techs have had? After all, I'm supposed to be the one she trusts the most. I suppose I don't have the objectivity needed to deal with her. She cries a lot with me but she's hardly cried with the techs. Maybe she knows tears aren't going to work on them and I'm weak.

Food log:
2/21
Session 1: 10g
Session 2: 7g
Session 3: 11g
Session 4: 12g

Liquids log:
2/21
Session 1: 10g
Session 2: 10g
Session 3: 11g
Session 4: 14g

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.