Thursday, November 24, 2011

Four eyes.

Olivia's wandering eye was beginning to scare the other we got her some glasses. She absolutely loves them and pushes them up her nose every 15 seconds, in true dork fashion. We stinkin' love this kid.


I'm ready, I'm ready!

Perfect fit!

Sunday, October 23, 2011

Thursday, June 23, 2011

A Year in Pictures

These pictures detail Olivia's year in Virginia, through all of her adventures and crazy antics! (Posted by Lizzy because she knows people want an Olivia update!)

Olivia hit many of her milestones while in Virginia; crawling, walking, talking and finally...drum roll please...eating! She has come so far from her days spent in the NICU, as you can obviously see.

Olivia's spends her days cuddling her babies, making salads in her play kitchen, taking her babies for walks, having her toenails painted pink, swimming in the bathtub, putting on and taking off her shoes, saying Hi! to strangers in the store, making people laugh, eating her "candy" (pureed veggies...) and cycling through all of her family members names (Daddy, Mommy, Mama, Izzy, Aggie, Mamon, Ana, Inny)

Let's just put it this way, Olivia is one busy little girl!

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.