Thursday, February 23, 2006


Well, after a crazy month, Lili is feeling wonderful! She has been sleeping well the last few nights and playing and smiling during the day. She is meeting one therapy goal after another and making us all come up with new goals for her. Hmm...crawl, walk, take over the world!

Here she is sitting up on her own. She can sit up for up to ten minutes by herself now, and catch herself (most of the time) when she leans over.

She's even doing daddy's work for him. The quality has gone way up.

She has a new G-tube called a MIC-key button that sits right up against her skin. We attach a tube to it when she needs it, and can remove it the rest of the time. She's fighting off the last little bit of bronchiolitis, a cold that got into her lungs a little. We're working on getting her a different thickener so her digestive system will have a better shot at working normally. And your tax dollars are hard at work for Lili, as she just got approved for Medicaid. Actually, I think a health savings account would be a much better idea. Then Lili would learn to manage her own health care costs more efficiently. Last 2 sentences: sarcasm.

Thursday, February 09, 2006

Hospital pics

Here are some pictures from Lili's stay in the hospital a few weeks ago. Mommy got to hold her the evening after the surgery.

2 days after, she was reaching for Mommy and getting more alert.

She is doing very well now. We have been battling keeping gas at bay; the g-tube is a big help with that. She is eating very well; we've only used the g-tube a few times to feed her. We've decided to go with feeding her home cooked fruits and stuff (which as you can see by our last post, she loves to eat on her own) and formula, to eliminate the unknown foods that make her uncomfortable. We could run an experiment to figure out what they are, but then she'd be miserable for four months and then go off breast milk anyway.
When the gas or constipation isn't bothering her, she is happier than ever.
All of our initial follow-ups went very well. The incision is healing excellently, and the g-tube site looks fine. It still looks interesting to mommy and daddy, but dozens of doctors and nurses have said it looks good since day 1. The surgeon wants to see her again March 1 to replace the g-tube with a 'MIC-key' button that will be practically flush with her skin. We've also had a nurse come to our house a few times to help us learn all this new stuff.
We'll keep you posted!