As a precaution, I was dosed with steroids to help Alexis' lung development (2 shots). And after 4 or 5 days (who's counting), we were sent home (on bedrest) because it looked like Alexis was 'staying put' (my speak).
You can read more about Alexis' journey here: http://ireport.cnn.com/docs/DOC-1194841
But what you don't know is some of the awesomeness that's been going on around here (yes, it's because I forget to write updates). It's not that there isn't anything to update, there is - I just forget to tell it when it's relevant.
1) Alexis talks* and sings. She's got this wonderful sing-song that she will make when she's in a good mood. Imagine dolphin sounds + lullaby. It's truly music to my ears. The *talking part is thanks in part to her wonderful iPad and the app Touchchat. Her favorites are to tell us what season they are working on at school (Christmas), tell folks what happened over the weekend (she's even told them that she had party + Patriots). And she even (often) will tell you "I'm so over it". Yes, she's 8 going on 13. I'll try to record more of the singing.
2) Alexis walks* like a champ. She still uses her walker and she still knows she can do it by herself. I think she's just rather have her walker to keep people out of her space :) Actually you can see it in one of her pictures, she'll actually reach out of her walker to get to people to hug on them.
3) Alexis eats like a champ. I don't have to put an asterisk on that one. I knew we had been increasing her food (at my request), but I hadn't sat down to calculate calories. By mouth, Alexis regularly eats 1200 calories each day. That's more than she's ever had by mouth- it's mostly baby food purees. We'll confirm with the nutritionist in January, but I *think* we may be able to further reduce her g-tube formula. If that's the case, we'll still need the g-tube for water - because Alexis still can't drink enough (practicing on that).
4) Alexis joined Merrimack College Basketball Team: http://www.merrimackathletics.com/sports/wbkb/2014-15/releases/2014121599205s
I should mostly say, we've all joined the Basketball Team. We attend the games (thankfully indoors), we bought the clothes, we look like we're regular fans - but we're not! We're super-fans! Our team is fabulous, so truly fabulous. And Matt even showed off his NCAA Final Four Ring at the "Signing Day" events. We'll go to some practices between Christmas and New Year's. I'm sure you'll be hearing more and more about the team and the awesome coaches and players!
For now, squeeze your kids tight- they are all miracles. And remember kids and family, you may have lost. As we have, living as much in the present and hoping towards the future - can eventually be blessings!
