Monday, September 27, 2010

Use your imagination

And just pretend I wrote an update when I promised I would. No fancy excuses here, just life.

and as long as we're pretending, just imagine that Olivia's pants match her shirt today. They matched when I got her dressed in the dark this morning. It's magic.

We're making incredible progress. Olivia is averaging about 3 ounces per feed these days, up from zero. And she's taking pediasure (her big girl formula), fruits (peaches, bananas, applesauce, strawberries, "fruit cocktail," etc), and a few veggies (sweet potatoes, carrots) in the form of a puree from a squeeze bottles and sometimes spoons. Cec, if you're reading this, I'd love to see a sentence diagram of that sentence. It could take two pages if we did it right.

There's a really wonderful, unforseen benefit to bringing your child to the hospital and forcing her to interact with nice people even though she's terrified of them- Olivia is now much more sociable. She no longer goes into hysterics the first, second, or third time she meets someone. In fact, she actually waves at strangers from her stroller as we walk through the hospital or the park. I love it!

She's also learned to stand up on her own, without even using furniture. No independent steps yet, but they've got to be just around the corner. I'm interested to see what Olivia's PT says when she gets home- we've been working towards this for a long time. We've talked about ankle support braces, at least temporarily, so I'd really like to have him look at her stance and see what he says. In the meantime, Olivia's favorite pasttime is climbing on top of anything and everything, and then standing on it. Dogs, furniture, toys, laundry baskets, wagons. Olivia thinks she's king of them all.

Also, spending so much time with older kids, and especially sharing toys with them in an enclosed space has, ahem, encouraged Olivia to try interracting more often. We've noticed that she's learned three new oral words (baby, ball, fish) since coming here. That brings her to a grand total of... four! She's also learned and uses the signs for papa, all done, and more.

More is my favorite right now. Today, when Olivia's timer went off and she turned it off, she refused to do the all done sign. Usually she can't wait! But today she looked her therapist in the face, and signed more. Then she did it again. Charles and I were watching from the other room, and we were speechless. Kacie held up a cup of yogurt and a cup of carrots, and asked which one Olivia wanted more of. Olivia pointed to the carrots, so she got a spoonful of carrots, and then we got to go pick her up for playtime. I never thought this day would come, but it's here! Olivia is having fun taking her bites!

Friday, September 17, 2010

She's not just learning how to eat!

Olivia's really catching up quick, now that she's learning to use her oral muscles and watching big kids play all day. This is her new trick- as you can see, she's pretty proud of herself! We can't get her to take any steps yet, but we've seen her balance herself for over a minute in the same spot. This isn't really her best work, but it's funny. She's very into babbling and blowing raspberries these days. I'll be writing a real update sometime this weekend, I promise! video

Wednesday, September 1, 2010

Day 3

Day 3 was pretty good!
Our morning starts at sevenish, when we wake up Babyface and get her dressed and pack our bags for the day. We pack her backpack with a fresh Zevex bag, two cold cans of formula, two extra outfits in case of vomiting, and enough diapers and wipes to get through a hurricane. You never know. Then there are the things that are always in there, like medical tape and scissors, a spare button, and a bolus extension tube in case... I don't know. In case she chews through the one she's using.

We get to the hospital at eight, when Kacie (Livie's feeding therapist) comes and takes her to the octopus room for her first session. All the rooms are sea creature themed. There are tv screens in the cafeteria with aquarium footage that Livie loves. She's a water baby for sure. That should make Grandma Jean happy!

Right now in therapy we're changing gears from just accepting bites to actually swallowing them. Olivia exhibits "pocketing,"which means she keeps food in her mouth until she gets a chance to spit it out or just explodes. Her therapy is all positive reinforcement for desired behaviors (taking her bites, swallowing them) and ignoring or preventing negative behaviors (swatting the spoon away, crying, vomiting, gagging, refusing to swallow.) If she spits out her food, she has to take another bite and swallow before she gets to watch her video or play with the toys she picked out. She starts her own timer at the beginning of the session, has her lip, gum, and cheek "stretches," chewing practice, and then takes as many bites and drinks as Kacie can get into her before her timer goes off. Then Livie turns it off, and once she's swallowed her last bite, she gets brought back to us.

Meanwhile, we're watching on a closed circuit on a tv right underneath a little wooden octopus. We record the sessions for us to take home to train other caregivers, like aunts and grandmas. And also because someday we want Olivia to realize how much progress she's made, and how proud she should be of herself. As soon as we finish filling up the first DVD, we'll probably post it to YouTube and post a link, in case any of you are interested in what feeding therapy looks like.

For some reason, blogger won't let me post my pictures right now. I'll try again soon. If you have any questions, feel free to ask them and I'll try to address them in my next post! I know there are a lot of families out there thinking about feeding therapy for their own kids, and I'd love to be able to help if I can.

Tuesday, August 31, 2010

Children's Hospital Feeding Program, Day 1

In the coming days and weeks, I'll be posting more about Livie's daily sessions and schedules, and letting you keep up with her progress. For now, I'm just filling you in on the basics. I'll also be posting pictures of Livie here in the hospital, at home in the play room, at recreational therapy, etc. And if her friend's parents are ok with it, pictures of Livie and her friends.

Yesterday was day one of Olivia's intensive feeding program here in Richmond. We've decided to stay down here for the duration (two months) since we got a spot at the Ronald McDonald house, and because Livie's having anywhere from 3 to 5 different therapy sessions per weekday. We hated to have to wake her up any earlier than we already are to get her to therapy at 8 am. She's not a morning person. No idea where she got that from. Ahem.

So, we drove down Sunday night to get checked in and ready for therapy the next day. I don't know what I was expecting the Ronald McDonald house to be... I guess kind of like a hostel, or something. Just a bed and a crib to sleep in, and maybe some dishes to cook with. I was so wrong! They let us in, got us oriented with their policies, and then gave us the tour- there's a lounge on the main floor, and a library lounge on the third. There's a kid's play room in the basement across from the complimentary laundry room (they even provide detergent. WHAT?!). The playroom has Shel Silverstein illustrations all over the walls, and so many toys for so many age ranges. Some of them haven't even been opened yet. And some really awesome kid books. Everything from Harry Potter, to Ramona, to baby Einstein. I'm so in love with that playroom. They just ask that you sanitize and put back any toys you get out. After that, we were shown into the feeding room just for kids in Olivia's feeding program- can you believe that?! There are only two families, including ours, who are in Livie's program and staying at the Ronald McDonald House, and we're becoming good friends already. So I don't forsee any problems getting time in that room. It's so thoughtful of them to realize that the feeding process is very tenuous and stressful, and removing every possible distraction goes a long way towards producing a productive feeding time. Then we were shown in the fenced in backyard- where they have a tiny real-life house for kids to play in. It even has flower beds in the window sills! That made my heart melt. I can't wait to let Olivia discover that gem.

Our bedroom is nice and comfy, with a soft bed for us, a nice safe crib for Livie, a closet, a ceiling fan, a dresser, and a little desk/vanity. All our stuff fits in there fine, even with all of our feeding supplies and medications. We supposedly share a bathroom with the other people on our floor, but so far the rooms we would share with are not full. As far as I can tell, we only have three or four families staying right now, but they can have up to nine.

There's also a fully stocked kitchen- pots, pans, silverware, etc. Even table linens. And They must have people donating food all the time, because there are several foods in the pantry and fridge that are for general consumption- cans of soup, tupperwares of casserole and sliced up fruit, a cherry cobbler, etc. I cannot believe the generosity of these people. We went and bought some personal frozen meals, like broccoli and cheese sauce, mac and cheese, spinach souffle, etc. Just healthy, frozen, fast meals since we seem to be on the run all the time, and we're not sure how predictable the food supply will be there. We also...drumroll please...bought a teeny tiny backpack (smaller than the one she has from the health care company) that is insulated and small enough for Livie to actually wear around, while she's still pump fed. It was really cheap in the lunchbox section at Walmart. My mom and I have been looking for months for one this small, since she refuses to wear the one she has, and won't crawl or move around if we get her into it. She seemed to really like this one, though. I'm way pumped.

Yesterday was just a baseline day, so Charles and I fed her the first two sessions, and the therapist fed her the last one. We didn't use any special techniques, just fed her as we would a typically-eating child. She did about as well as we expected, if not better. She was actually comfortable with her therapist by the end of the day, which took weeks with her home therapist. She still cries every time we walk through a new door, because she's still petrified of hospitals, but today was noticably better in that regard. I'm so impressed.

There are naprooms available to the program patients, and Liv's had no problems falling asleep in there yet. We change the sheets every time, but we don't have to wash them. There's a rocking chair and a nightlight in there for us to accompany Livie on her sleeping endeavors. I love rocking chairs. I just do.

The main thing for me was putting my baby through something this stressful for two months. But so far, I have much more hope that she can get through this and it will be beneficial to our family, especially to her. I've received whispers from the Spirit that we're doing the right thing, and in a blessing Olivia was told that she would not lose any bit of the personality we've seen her grow and have come to love so much. I have faith that she can do this, and that we can, too.

Monday, July 12, 2010

belated (adjusted) birthday post













Note to blog readers: This is a long post mostly written for me and for Olivia. You're welcome to read, but don't feel like you have to! Our main update is that Olivia is a year old, she's crawling, she's happy, and we love her guts! If you would like, I've included some pictures from her first year that I've had fun seeing again- you can look through them, too. I've included a long, boring post about my feelings about my daughter. And finally, at the end, I'll have a list of her favorites, and some typical Livieisms. Enjoy!











One year ago, today, our baby girl came home from the hospital for the first time. We were on our own with her for the first time, she met her cousins for the first time, she had her first car ride, her first night in her bassinet, her first time in her bouncy chair, met Wilson for the first time, and for the first time since she was born, our family was all together. That was such an awesome day.
It was also a nerve-wracking day. It was her first day without a pulse-oximeter and blood pressure cuff. I sat in the backseat with her on the way home from Primary Children's Hospital with my finger under her nose to make sure I could feel her breaths. I washed my hands about sixty times that day, to prevent introducing any germs into her fragile system. And even though we were very sleep deprived from pumping all the time and driving back and forth in the night when I just had to see my baby and tuck her in again, we both kept one eye open that night. We couldn't believe our little fighter was actually home.
Olivia has brought so much to our family in her first year and two months. She's humbled us, and taught us to rely on our Heavenly Father. She's illustrated our need to invite the Holy Ghost into our home. When she caught MRSA as a newborn with a fragile immune system, we found out before it was a scary hospitalization. Because we felt prompted to have her pediatrician look at her surgical site- she said it was "beautiful," but took a culture because we'd taken the time to drive to American Fork to see her. We caught it in time to sterilize everything in our house and warn off her therapist, who might have taken it to other fragile kids.
Olivia's brought so many smiles and giggles into our home. We will do anything to make that kid smile, because she is so good at it! I'm kind of a shy, reserved person with new people, but Olivia has pulled me out of my shell on more than one occasion. The other day at the play place at the mall, Olivia made "friends" with another girl her age... then climbed into the lap of that girl's mom and looked through her diaper bag! So obviously, I needed to make friends, too. That was new for me, and surprisingly really fun!
Olivia's wreaked havoc on my nerves. But in some ways she's also chilled me out. I have anxiety about her feedings, her vomits, her behaviors. I'm afraid I'm going to do something wrong with her and make her life something that it shouldn't be. But I no longer freak out about dog hair in her mouth. I'm not really phased by piles of laundry like I used to be. I'm grateful that she's exploring and finding dog hair (and adventures) on her own. I'm excited that we get to put her in all the adorable outfits her aunts and grandmas have made/sent her. She takes full advantage of her wardrobe.
I'm starting to get in touch with my inner toddler again, and it's fun. Pink is funny. Sunglasses are hilarious. Blankets are so cozy and kittens are intriguing. I can't wait to put her in her first tutu. I love seeing her light up when she experiences something and loves it or hates it so dramatically. Swimming pools make her shriek with laughter from the parking lot to the actual pool. Ice cream is decidedly yucky. Even Ben and Jerry's. Even Dippin'Dots. Even creamsicles.
Olivia's special needs have opened up a whole new world to me that previously, I'm ashamed to say, would have gone unnoticed. I've joined an online support network of friends with kids like mine, and I'm learning patience and humility along with all the research and feeding tips they provide. When we were first told that Livie's lack of oxygen at birth may result in some real problems for her, we were completely out of our element. But they prepared us for the worst, and Olivia wasn't listening. She's faced developmental delays, but she has therapists and doctors working with us to help her find her way. She's crawling now, and just this week she learned to climb the staircase (yay?). She's babbling all day long, and she says nigh-nigh to us at bedtime. She may take longer than others to learn to eat, learn to talk, learn to read... she may not. Only time will tell. But either way, our home is filled with love and silliness, and she will grow up in a gospel-centered family.
Olivia, I'm so grateful you came into our lives, and I'm so grateful you decided to stay. I love you more than I knew I could love!

Typical Livie:
-we go to physical/speech therapy on Tuesday, and occupational therapy on Wednesdays. You hated this at first, but now when we pick you up at the end, you wave and try to get back to playing. Ryan and Allison are your favorites!
-We babysit our friend from the ward on Thursdays and Fridays. We usually head straight to the pool, which you love! You can recognize the parking lot, and start giggling and dancing from the time we park until we put you in the water. You are part fish. Koi, I think. Something big and floppy, anyway.
-Saturdays and Mondays are our fun family days. We usually have Papa home to ourselves, and we play with him. Papa is your favorite person in the whole world. You call his name "Ahpa!" first thing in the morning, because you know he'll come running to squeeze you and start your day. We like to take him to the mall play place, because he chases you around and keeps you safe from the bigger kids would have tried to crush you. Thank you, Papa!
-Sundays are hard for you. Church is during your naptime, and you will not sleep anywhere but your crib. No matter how much cuddling, coercing, swaddling, etc is involved. I teach relief society once a month, and Papa teaches the youth sunday school, but you have no end of baby-sitters who are aching to take you off our hands at church. Thank you, Grandma, Tantes, and Grumpa.
-you wake up happy, every morning around ten. We couldn't ask for a better kid. You sing in your crib until you're ready to get up, and then you stand up and call your papa over.
-you sleep through the night when you're feeling good. You have since the first night you were home. If you're not feeling good, you wake up around one, and shriek until you barf. Then you feel better, and we play until your pj's are changed, your sheets are changed, and maybe you've had a bath. Then you happily go back to sleep. Until it's time to barf again.
-We feed you every 3 hours, except from 1-6 am. We give your tummy a break. Lately, you've been barfing upon waking, so we're trying out a new schedule that will feed you more late at night, and less in the morning while you're groggy. We'll see how it goes. Every day is a struggle to get the alloted number of calories into you, but you don't seem to notice either way, and your dietician is always impressed with your weight, so we try not to stress. (well, I try not to. Papa medicates me, and then puts me to bed when you insist on regurgitating your calories and fluids. Thank you, Papa.)
-You LOVE your puppies and kitties. You squeal and go nuts whenever you see them. There are four in our house, so you are often nutty and silly. Grant likes to hang out under your spot at the table, and he trials foods right along with us. So far, you haven't taken to purees, strawberries, ice cream, cookies, chocolate bunny, bananas, sweet potatoes, mashed potatoes, peas, toast, or much of anything. Grant has, though. You are making him fat. You tend to prefer crunchy, salty foods. You like sun chips, baby carrots, string cheese (in the package only. Not opened) and you don't swallow those. You LOVE ice cold water from your bunny cup with a straw, though. And you like when we give you Mylanta- you suck it from the syringe.
-When we ask where your belly button is, you point to your tube button. I think that's hilarious, and so do you.
-You are a crawling maniac. You love to pull yourself up on things, but you don't trust gravity. You bend your knees almost till you're down, but then get nervous and stand back up. You usually need a pep talk to get down, and sometimes some help. We try not to do it for you, though.
-Your blanket is your favorite item in the house. When you get sleepy, we hand you your blanket and you bury your face in it and moan. That's called "passing the tired test" according to your Aunt Lizzy. It means you're a goner, and you tell us "nigh-nigh."

Friday, May 28, 2010

Olivia's Dance Moves

Olivia loves music of any kind. Her favorites are Shakira, the Black Eyed Peas, and hymns in church. Don't mind the wading pool in the front room- it hasn't been used yet, so she's having fun using it for climbing experiments. for her birthday, if the weather cooperates, we're going to fill it up in the backyard and stick her in her new (spf 50) swimsuit. With some (spf 50) baby sunscreen and sunglasses. She's definitely my daughter when it comes to skin- I just know she'll fry if we let her.
video


video


Sunday, January 31, 2010

meal time=play time

At least, that's what Olivia seems to think these days. And it's hard to argue with her once she starts giggling! Man, I love this kid.

Saturday, January 30, 2010

exciting new changes!


I bet at least two of my readers didn't believe me when I said I wasn't pregnant. Sorry, still not. I'll be sure to let ya know.
Our exciting news is that Anna and I have started our own crafting business online! It's called LiviesWhimsies, after our mascot, Olivia. Oh, livia. We've been busy creating tons of whimsical accessories. I've learned how to crochet, and we've taught ourselves how to make singed organza flowers. It's been really fun for me to feel like I'm actually doing something. I haven't been able to get excited about anything lately, but this is one thing that makes me giddy.

Anyway, we have a blog where we show our projects in progress, and we'll also be highlighting some of our favorite undiscovered shops from etsy once a week on Saturdays. Starting today! Livieswhimsies.blogspot.com is the blog address if you want to check us out.
We have a fan group on facebook where we'll also make announcements about upcoming products and when we've updated the blog and shop. The name is Livieswhimsies, and everyone is welcome to join!
And last but not least, our shop is livieswhimsies.etsy.com. Feel free to stop by and see what we're offering! We'll be adding to it every few days, so there should be new stuff to see pretty often.
I'm so excited about this. It's been a real family effort over the past month or two. Charles and Cam are doing photography, Maggie's a model, my mom is our... ahem, main investor. Anna and I are full of ideas, and I can't wait to get them online for you!

Thursday, January 21, 2010

ok, ok, ok


















I know it's been forever since I posted, and I'm getting an earful from my sister every few hours about how she needs to see her niece, so I'm going to post a few pictures of her while I work on my next post. We've got some exciting changes (no job, sorry) coming up that I want to share! (also not pregnant. I'll just tell you right now.)
Olivia's recent developments: crying for no reason. It's so weird. She's never been a fusser, but now she whines at the drop of a hat. It's not a very cute development. But she's got a tooth to show for it, and one about to burst through, so I guess it's understandable. Considering she uses her mouth for everything. Except eating, that is.
Another recent development is that she's figured out how to close her mouth, twist her head away, push things away from herself, and throw herself backwards to get away from something. All these things add up to one thing: Olivia eats hardly anything by mouth. BUT she seems to have outgrown her habit of violently vomiting everything we painstakingly put into her, meaning we have much more play time these days. Since instead of taking two and a half hours to feed her while we try to keep her very still, we can take a half hour and play with her the whole time now.
She's such a tiny little person. We've become good friends, even though we have quite an age difference. She's just very easy to love and get along with, and I couldn't ask for a more perfect addition to our family. I'm so grateful that we have her.