No more feeding tube?

Erica had a swallow study today. That means she eats things (pudding, mac & cheese, pb&j, milk) mixed with barium, which shows up on her x-rays. This way, they can see what she's doing with the food in her mouth and if it's going down her airways. She did fairly well. She did good with the pudding, ok with mac & cheese, horrible with the sandwich, ok with the milk. The doc thought maybe the feeding tube was making it harder for her, so he took it out, and she did do somewhat better. So, as long as she continues to do well, the feeding tube is out, and she's on a soft diet -- thickened liquids and soft food.

Ok, ok, I'm repenting

Having been chastized for not updating my blog, I am now updating my blog. I told my hubby that I wasn't updating because nothing was happening, and he disagreed. Erica's making progress every day, so that she's a lot further along than she was when I last wrote, but the progress is coming slowly day by day, so each day it doesn't seem like much.

She can talk fairly well now. It still takes effort to understand her, but when we can't, she writes down what she's trying to tell us. She's taking bites of things during therapy - chocolate pudding, mac and cheese, graham crackers. She does ok, but she's still working on making her tongue stronger. She had a swallow study last Friday and did horrible in it, but at least it allowed us to see that it was her tongue that needed to get stronger to move the food back. She has another swallow study scheduled for next Monday. She's still getting fed by a feeding tube through her nose. On Tuesday she threw up a few times (too much food in her belly, we think), and the feeding tube came out. So they put a new one in Wednesday morning.

PT is going well. She walked a few steps (20, she says) on the parallel bars today. She can sit ok, but still falls over after a bit. She still can't crawl, but is definitely getting better. Her arms move ok, but her legs are still stiff. James says to mention that she's now using her own wheelchair instead of the CCMCs, which had head and side supports. That means she's able to support herself well enough in her chair. And she can push her chair around the halls by herself, although she likes to be pushed.

That's all I can think of for an update. Sorry I'm not keeping everyone updated, I just don't think about it. But feel free to ask anytime! :)

She speaks!

What a great week this has been! Erica is able to hold her head up for longer periods of time, and yesterday she spoke! We're so excited. It was "hi". Now she's able to say about 10 words. It's very scratchy and not much louder than a whisper, but it's the first words she's spoken in almost a month. And she's getting strong enough that she's able to write down what she wants to say as well, although it's a bit wobbly. But we're so excited at the progress. My mom was calling everyone on the phone that she could get ahold of so Erica could say hi to them. Thanks for all your prayers and fasting on Erica's behalf. We know that this has helped her progress tremendously. Her therapists are amazed at how fast she's gaining strength.

Movin' on up (movin' on up) to a deluxe apartment in the sky...

Erica is out of ICU! We're still in the hospital, but Erica's doing very well. She is still going through therapy, she can't eat yet, she can't talk yet, and she's working on holding her body up. But she's improving greatly every day.

On the other front, Zachary has 2 new teeth, his first ones! We teased Erica that the tooth fairy took her tooth and gave it to Zach. She thought that was funny. He can also sit by himself for a while before toppling, and rumor has it that he can turn over. But we're not quite sure if Jessica has gotten involved with that or not. :)

P.S. Bonus points to anyone who knows the TV show that goes with the lyrics of this title!

Going for a walk

Today was a full day for Erica. She's completely off oxygen and doing well. She's still getting respiratory treatments, which means they put a mask on her face and it gives her an extra dose of air when she breathes in. They do this for 80 breaths every 4 hours. It is so her lungs get a bit more expansion, since she's not doing anything aerobic, so her lungs don't get lazy and stiff. She hates it, but she's gaining good strength fighting back. Erica's personality is coming back, and she's fighting the nurses at every turn. But they're all glad to see that she has some spunk now.

PT put her in a wheelchair and took her outside. Erica was very glad to do that. She still had trouble holding her head up, but her arms are definitely getting stronger. The PT sat with her and sang itsy-bitsy spider and wheels on the bus while Erica did the hand motions as well. OT worked with her on rolling over and sitting up. She was able to do it with a lot of help, but she's definitely putting forth some effort.

The doctors are anxious to get her out of PICU and onto a regular floor, especially since the PICU is full. But she's still having difficulty with managing her saliva and has to be suctioned often enough that they aren't ready to move her yet. But she was better tonight than she was this morning, so she's definitely improving. Speech came to see how well she could swallow, and she had difficulty in swallowing some ice chips (well, not the chips, but the water). So still a lot to work towards there. But we made great progress today and Erica worked hard. We're proud of her.

Breathing easy

Erica's breathing tube came out today, yeah!!!! Her surgery on Monday went great, and she's been awake and alert since. She wasn't doing very well when they would turn her machine off, but the neurosurgeon attributed it to being hard to breathe with a tube in your throat. And the respiratory doc thought she was actually getting too much supported air from the machine, and when he played with some settings, she did fine. So they turned it off, and she's doing fine. She still can't talk and isn't really swallowing, but she probably has a very sore throat.