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.