The babies were diagnosed with Spinal Muscular Atrophy (SMA) type 2 this week. It's pretty devastating. But I think it's better to know what we're dealing with right now, rather than them being "medical mysteries", right? I'm so glad we have Phoenix Children's Hospital to work with. They've been great so far. In the past, with other random issues and doctors, it seemed like we managed to slip through the cracks in terms of test results and call backs and such, but this has absolutely not been the case with PCH. My only complaint is that PCH isn't closer to my house! But actually 20 mins drive isn't that bad. And it's awesome that their facilities are so kid friendly--we had to bring Jenna with us to an appointment and she felt right at home at a coloring table watching Sprout, so that was a relief.
If anyone knows of tactics I can use to convince my husband that we now more than ever need a big family trip to Disneyland, please share! I want to go now, while the babies are still small enough for our normal double stroller and we don't have to travel with wheelchairs or other equipment.
I could post so much more about SMA and the ramifications, but I have no energy left. I've been talking about it and crying about it for four days now and I'm all out of words and tears for now. Many, many thanks to anyone who includes us in your prayers.
And in honor of Halloween tomorrow, here are a couple photos to get you in the spirit of the holiday--enjoy!
Humorous musings on life with three kids. I like to think that I'm funny, but I'm not really. So less-than-humorous musings on life with three kids, that's what this blog is. It's titled "...Bahamas, Bahamas, Bahamas..." because that's my mantra when things are getting rough around here. I've never been to the Bahamas, but I have promised myself that I will one day get there. Bad Day? "Bahamas, Bahamas, Bahamas!"
Thursday, October 30, 2008
Wednesday, October 15, 2008
Well, at least my house is a lot cleaner.
The screen on my laptop--my best friend--bit the dust. Went bye-bye. All black. I got nothin'.
To check my email now, play Word Twist on Facebook, and to blog, I have to drag myself upstairs into no-woman's land and use the desktop computer. So, I don't. Not very often, anyway.
It sort of sucks, because I am very much addicted to the internet. But it's sort of great, because I'm actually doing stuff around the house, playing with my kids, and Wii'ing more. These are all good things. So I guess it's good that my laptop died. It's showing me that my days are still overflowingly busy even if I check email only once (GASP!) per day.
And if you notice that I don't reply to an email within 5 minutes, or I have Word Twist games stacking up untouched for days, or I only blog once a month, don't think I have just been hit by a truck. I am still just adjusting to my lack of connectivity to the world! And finding that there is still a wonderful world out there in my backyard, literally. :)
To check my email now, play Word Twist on Facebook, and to blog, I have to drag myself upstairs into no-woman's land and use the desktop computer. So, I don't. Not very often, anyway.
It sort of sucks, because I am very much addicted to the internet. But it's sort of great, because I'm actually doing stuff around the house, playing with my kids, and Wii'ing more. These are all good things. So I guess it's good that my laptop died. It's showing me that my days are still overflowingly busy even if I check email only once (GASP!) per day.
And if you notice that I don't reply to an email within 5 minutes, or I have Word Twist games stacking up untouched for days, or I only blog once a month, don't think I have just been hit by a truck. I am still just adjusting to my lack of connectivity to the world! And finding that there is still a wonderful world out there in my backyard, literally. :)
Wednesday, October 8, 2008
European Vacation. Anyone?
Will anyone take my kids, so that I can go to Europe? I mean, I know the name of this blog is related to the Bahamas, and so you'd think that would be my go-to vacation spot. But I want someplace cool. I want...London. Two weeks. The last time, we took tour buses throughout the country and did all the touristy things. The next time, I want to visit Scotland and Wales, maybe, but otherwise I want to chill out and consume cheese and Carlsburg in Hyde Park, while I read books and pretend like I have a British accent. Maybe watch the original The Office in the evening. And tolerate my husband dragging me to soccer matches that I pretend not to like but secretly somewhat enjoy, given that I've consumed enough Carlsburg and all.
I have the money and the frequent flyer miles to get there--um, with my husband, of course. But I won't take my kids, they're too little and I'm too selfish. Boo hoo, it was so easy when it was just one child! Or none! Ahh, I almost remember those days, if I mute the TV and think really hard. We would literally pack up and go anywhere on a moment's notice. And for free. But that was before 9/11 and before the airlines got all snooty with the number of available frequent flyer seats. The good old days, you know?
I have the money and the frequent flyer miles to get there--um, with my husband, of course. But I won't take my kids, they're too little and I'm too selfish. Boo hoo, it was so easy when it was just one child! Or none! Ahh, I almost remember those days, if I mute the TV and think really hard. We would literally pack up and go anywhere on a moment's notice. And for free. But that was before 9/11 and before the airlines got all snooty with the number of available frequent flyer seats. The good old days, you know?
Tuesday, October 7, 2008
I totally heart my Wii.
We've had the Wii for a couple months now (thanks, IRS stimulus check!), and I have to admit that I am not a video game person and haven't bothered playing a single game. Until the other day, that is, when I finally opened up the Wii Fit. It is so cool! I did a hula hooping game this morning and it told me I'm a good calorie burner! Who knew? I bet it's the clothes. I'm sporting the pink Nike outfit today and am channeling my energy into figuring out this new Wii Fit.
Excersize had to wait, though, until I played around with the Mii's out there. I added so many celebrity Mii's to our system today--Hulk Hogan, Tom Cruise, Hello Kitty, C3P0, Paris Hilton, Conan O'Brien, Scooby Doo and Lucy (from Peanuts), just to name a few. I'm pretty sure my husband will get majorly annoyed that Paris is on there now and he'll probably delete her. But it's so much more fun playing, say, Wii Baseball, now that the teams are fleshed out with such fun faces! Before today, the only other Mii's we had out there on the field, besides our own selves, were Batman, Chuck Norris, and Jack Black. Clearly, this whole business of adding Mii's needed a woman's touch. ;)
Excersize had to wait, though, until I played around with the Mii's out there. I added so many celebrity Mii's to our system today--Hulk Hogan, Tom Cruise, Hello Kitty, C3P0, Paris Hilton, Conan O'Brien, Scooby Doo and Lucy (from Peanuts), just to name a few. I'm pretty sure my husband will get majorly annoyed that Paris is on there now and he'll probably delete her. But it's so much more fun playing, say, Wii Baseball, now that the teams are fleshed out with such fun faces! Before today, the only other Mii's we had out there on the field, besides our own selves, were Batman, Chuck Norris, and Jack Black. Clearly, this whole business of adding Mii's needed a woman's touch. ;)
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