Friday, March 23, 2012

We busted out of 304

So we almost didn't get out. Almost. Elisabeth had a tonic-clonic seizure right before Dr. G's PA stopped by yesterday morning...and then she wasn't sure she wanted to let us go.

"Oh, those are totally normal," I tried to convince her. Then she laughed. I suppose the word normal does not typically pair up with tonic-clonic seizure, but hey, this is Elisabeth we're talking about.

So we had to stay a little longer. And as soon as I was convinced that they wouldn't discharge Elisabeth in time to make it to her orthopedic appointment, I called and cancelled. And of course - a few minutes after that - they decided that it would be okay for Eliasbeth to go. So I called right back, snatched her appointment back, and off we went.

[Elisabeth says, 'I thought we were getting out of here?
Why in the world am I meeting with another surgeon?

[That's her curvy spine there in the background.]

[Don't mind her unruly appearance, she has what we like to refer to as hospital hair.]

We spoke with the orthopedic surgeon about her feet and about her recovery from her heel cord tenotomy last Thanksgiving. I told him how Elisabeth can bear her own weight for up to 20 seconds when she has her braces on. Have I mentioned that here before? This is a huge accomplishment for her.

Then we chatted about her spine - and about her severe scoliosis. It has given her such a hunched back and has made her extremely lop sided. In fact, the surgeon thinks her spine may be to blame for her trouble sitting up these days.

So what do you do about a child with extreme scoliosis? Well - get this - they might have to do a spinal fusion once her lungs are fully developed. And not just a single level fusion like I had - an entire back fusion - all the way from the shoulder blades to her pelvis. Great googly moogly!!! I didn't even know they did such things! But for now, she is getting a soft brace to wear. He said that it's not going to stop her spine from deforming, but it might give her enough support to help keep her upright while sitting.

So that was the appointment in a nutshell.

After that.....we went home! Needless to say, Elisabeth was excited:

Her sisters were excited too. They are so in love with their baby sister; it's not easy to watch her go off to surgery and not get to go along to watch after her. Here they are reuniting again:

After a long few days, Elisabeth crashed out in the comfort of her own bed:

It felt good to have the whole family under one roof again.

Just the way we are supposed to be.

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