So quiet that Sophie has had to make new friends...
Catch up with old ones...
And drink the night away.
Thursday, February 28, 2013
Meanwhile at home....
So quiet that Sophie has had to make new friends...
Catch up with old ones...
And drink the night away.
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.
Olivia and I feel so blessed. We've been getting quite a few care packages. Cousin Shanie sent a fat stack of glossy magazines, Girl Scout cookies, makeup remover face wipes, and a book for O. We got another one from Vicky, Ben and Fifi today. They sent a soft bunny for O and a manicure kit for me. Thanks guys! Little luxuries really do make being away from home just a bit easier.
Liquids log:
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 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 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" and she will learn that 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:
2/28
Session 1: 48g
Session 2: 23g
Session 3: 27g
Session 4: 0g
Wednesday, February 27, 2013
Day 10: Camp Nom Nom
Day 10 of 30
Camp is starting to get real. Every Monday, Wednesday and Friday morning they do a weight check, along with the usual vitals check, so they can measure the progress and make tweaks if necessary. Today is a milestone. She FINALLY broke the 20 pound mark. To most other kids, this is no big deal and they passed it awhile ago (if they are chunky, a long time ago). But for Olivia, she's hovered at the 18-19 lb mark for so long, gaining and losing, that this is big for her.
Today they started adding Pediasure to her meal times instead of water and it's making a difference. Afterall, water is empty calories and drinking Pediasure by mouth is what's going to get her off the tube fastest. I'm starting to really look forward to meetings with the nutritionist. Every time she comes and talks to me, I learn something new. I definitely do see her making vast changes in her eating patterns, but there's nothing like numbers to just take your breath away. Today she said that at first they thought she'd be averaging 50 calories a day by mouth but she's really looking at 150 calories by mouth (this is before Pediasure!) It's enough to take a whole tube feeding away! That's huge for us, it's always been a faraway goal, but never reality until now. They've also added to her menu. Instead of yogurt and applesauce, she's now willing to eat pureed sweet potatoes, vanilla pudding and potato soup. At home, she would play with the purees and might, just might put a finger or two in her mouth, but it all depended on her mood.
She's still hating VitalStim and it's the reason why Session 2 has such low volumes. She spends the whole time pulling off the electrodes and crying in frustration. It's was wrapped around her neck with a large quantity of bandage wrap in the beginning of the session. I was playing with my phone and when I looked up, it was around her head. She looked so miserable, but so funny, I started laughing and couldn't stop. Poor baby!
Food log:
2/27
Session 1: 32g
Session 2: 12g
Session 3: 26g
Session 4: 30g
Liquids log:
2/27
Session 1: 28g
Session 2: 16g
Session 3: 41g
Session 4: 39g
Camp is starting to get real. Every Monday, Wednesday and Friday morning they do a weight check, along with the usual vitals check, so they can measure the progress and make tweaks if necessary. Today is a milestone. She FINALLY broke the 20 pound mark. To most other kids, this is no big deal and they passed it awhile ago (if they are chunky, a long time ago). But for Olivia, she's hovered at the 18-19 lb mark for so long, gaining and losing, that this is big for her.
Today they started adding Pediasure to her meal times instead of water and it's making a difference. Afterall, water is empty calories and drinking Pediasure by mouth is what's going to get her off the tube fastest. I'm starting to really look forward to meetings with the nutritionist. Every time she comes and talks to me, I learn something new. I definitely do see her making vast changes in her eating patterns, but there's nothing like numbers to just take your breath away. Today she said that at first they thought she'd be averaging 50 calories a day by mouth but she's really looking at 150 calories by mouth (this is before Pediasure!) It's enough to take a whole tube feeding away! That's huge for us, it's always been a faraway goal, but never reality until now. They've also added to her menu. Instead of yogurt and applesauce, she's now willing to eat pureed sweet potatoes, vanilla pudding and potato soup. At home, she would play with the purees and might, just might put a finger or two in her mouth, but it all depended on her mood.
She's still hating VitalStim and it's the reason why Session 2 has such low volumes. She spends the whole time pulling off the electrodes and crying in frustration. It's was wrapped around her neck with a large quantity of bandage wrap in the beginning of the session. I was playing with my phone and when I looked up, it was around her head. She looked so miserable, but so funny, I started laughing and couldn't stop. Poor baby!
 |
| Desperate measures |
2/27
Session 1: 32g
Session 2: 12g
Session 3: 26g
Session 4: 30g
Liquids log:
2/27
Session 1: 28g
Session 2: 16g
Session 3: 41g
Session 4: 39g
Tuesday, February 26, 2013
Day 9: Camp Nom Nom
Day 9 of 30
What a fun day! We woke up to a package delivery to our door. We opened to find a cute pillow from Aunties April, Sandra and Judy. It had a printed picture of our family with a good luck message. How they knew that she loves pillows and likes to smash her face in them, I just don't know! We also don't have a printed picture up here, just digital ones. She quickly pointed out Daddy. I asked her where she was and she pointed at Sophie. Close, I suppose. Thank you, Aunties! We miss you!
Today in breakfast, she took another whopping amount. She still threw up after her nap, but ate a good bit anyways. In speech therapy she took 25g of strawberry pediasure and 20g of blended potato soup. Both are new to her, which is good news because she's not used to it - especially the pediasure. She's used to drinking only water so this is amazing to me that she's even taking the pediasure.
The
speech therapist wanted to try a new (to me) treatment called VitalStim
during her speech sessions. VitalStim is a treatment for those who have
trouble swallowing. It is basically electrical stimulation on her neck
to help the swallowing muscles contract and "remember" their function.
Too bad she absolutely hates the sensation of the electric stimulations. She cries a ton, but I'm conflicted. Olivia has technically passed her last test that cleared her to drink
thin liquids, but she still sputters and coughs a lot. She's had VitalStim done
to her three times already and she's already taking bigger sips of
water.
The hospital knows it's not all work and no play. They have a program called ChildLife and it's dedicated to kid play. They have daily activities (kind of like a nursing home) and it varies from week to week. Today was sponge painting. Yeah, I wasn't going to let her just go crazy with the paint since we don't usually let her dabble in it. It would have ended up everywhere but paper. But I did let her dip a finger or two in.
For so long we've had doctors and therapists saying that her condition is one in which she must grow out of, and it can be slow progress. God has shown me a way and covered our family with mercy and grace by giving us hope through this program. She's eaten so much these last few days and our feeding team is very shocked at how well she's doing. They had much lower expectations and she's exceeded most of them. She's even gained weight, which she hadn't done in so long. Keep it up!
Food log:
2/26
Session 1: 42g
Session 2: 19g
Session 3: 24g
Session 4: 33g
Liquids log:
2/26
Session 1: 15g
Session 2: 36g
Session 3: 23g
Session 4: 25g
What a fun day! We woke up to a package delivery to our door. We opened to find a cute pillow from Aunties April, Sandra and Judy. It had a printed picture of our family with a good luck message. How they knew that she loves pillows and likes to smash her face in them, I just don't know! We also don't have a printed picture up here, just digital ones. She quickly pointed out Daddy. I asked her where she was and she pointed at Sophie. Close, I suppose. Thank you, Aunties! We miss you!
Today in breakfast, she took another whopping amount. She still threw up after her nap, but ate a good bit anyways. In speech therapy she took 25g of strawberry pediasure and 20g of blended potato soup. Both are new to her, which is good news because she's not used to it - especially the pediasure. She's used to drinking only water so this is amazing to me that she's even taking the pediasure.
The hospital knows it's not all work and no play. They have a program called ChildLife and it's dedicated to kid play. They have daily activities (kind of like a nursing home) and it varies from week to week. Today was sponge painting. Yeah, I wasn't going to let her just go crazy with the paint since we don't usually let her dabble in it. It would have ended up everywhere but paper. But I did let her dip a finger or two in.
Food log:
2/26
Session 1: 42g
Session 2: 19g
Session 3: 24g
Session 4: 33g
Liquids log:
2/26
Session 1: 15g
Session 2: 36g
Session 3: 23g
Session 4: 25g
Monday, February 25, 2013
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
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
Sunday, February 24, 2013
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
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
Saturday, February 23, 2013
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
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
Friday, February 22, 2013
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
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!
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,
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
Dear Daddy and Sophie,
 |
| "Bubble" -O |
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
Thursday, February 21, 2013
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.
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.
Wednesday, February 20, 2013
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.
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.
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 |
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.
Monday, February 18, 2013
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.
.JPG) |
| 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 |
- 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!
Sunday, February 17, 2013
Saturday, February 16, 2013
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.
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.
Monday, February 11, 2013
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.
- 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.
Friday, February 1, 2013
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.
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.
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
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:
2/28Session 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
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