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
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