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Thursday, October 30, 2008

Spinal Muscular Atrophy

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!


  1. I hope Chris agrees to Disneyland, I think you guys should go. I also was thinking you need to get a DSLR to give you a hobby to work on and have something fun to do. I'm glad you are working with PCH, I think it's a great hospital. The halloween pictures are SO cute! We are praying for you all.

  2. Cass,
    You and your family have been on my mind ever since you told us of the diagnosis. I wish we lived closer to each other .......

    *hugs & Kisses*

  3. You're kids are absolutely adorable! Thanks for letting us be a part of their lives!

  4. Oh Cass, I am so sorry to hear of the SMA sounds like you all are going to be cared for by the best, but I know that news still has to be tough to deal with now.

    Here in Richmond there is an organization called Andrew's Buddies in honor of Andrew Slay, a young man who lives mere blocks from us (with his family, the dad is a big ad agency and PR guy here) with SMA.

    Here is the link...I am unsure what all they do, but I'm a "the more info the better" kind of gal.

    Keeping you all in thoughts and prayers. Peace.