One Week to Go

Thank you all for your prayers and words of encouragement on my last post. As I knew would happen, I had four people contact me whose babies also had choroid plexus cysts- and all went away and were born completely healthy. My worry and anxiety has dramatically decreased, and I’ve just decided not to worry about it until there’s a reason to worry. And honestly, I don’t have room in my brain to stress about it right now; Grayson’s surgery is a week from today and that’s enough to occupy my thoughts these days!

Grayson was cleared for surgery yesterday by the anesthesiology team. Thankfully, the doctor who we met with was one we have worked with before and I really like. She knows his history and didn’t ask stupid and annoying questions (my favorite: besides the Leigh Syndrome, does he have any other health problems? Ughhh…). Grayson will get general anesthesia as well as an epidural for pain management. 
We also see GI again tomorrow. G’s stool test came back positive for Rotovirus, which explains the awful diaper problems we’ve had the past month. Ironically, Rotovirus is the only illness he is completely vaccinated against, although I’ve read the vaccine loses efficacy after age 3. Thankfully, it has run it’s course and twice daily probiotics have worked their magic. I am feeling much better about keeping a cast clean if G ends up being casted. 
I’m kind of worried about how Charlotte is going to handle the craziness of next week. Lately, she has had a lot of difficulty with transitions- sobs when either we leave her or when people who are visiting us leave our house. We’ve been singing a lot of “Grownups Come Back”,for all you DT fans. Anyway, she’ll be spending the days next week with family and close friends, all who she adores, and the nights with me, Ryan or her Grammie, but I still worry she’s going to have a rough time. And it will be interesting to see how she reacts to her brother when he comes home, especially if he’s in a full body cast and/or in pain. She’s always been such an easy going, flexible little girl, but lately has been showing a major sensitive side- I just hope this side isn’t showing up at a bad time. 
At this point, I’m just trying to take one day at a time, enjoy my family, and let go of things that aren’t in my control. We WILL survive the next few weeks!


  1. Nancy Penney on April 29, 2015 at 1:59 am

    Ah, all good news. Love to all five of you. (Trying not to feel too smug for getting the DT reference! )

  2. apluseffort on April 29, 2015 at 2:32 am

    DT makes my life so much easier, I swear! Thinking of all of you. I know it will be so tough, but you will get through and it will be worth it. <3

  3. Down On The Farm on April 30, 2015 at 2:32 pm


  4. Lauren on May 3, 2015 at 12:06 am

    Thinking of you all and hoping for the best. You are a great mom!

  5. Amy on May 14, 2015 at 8:43 pm

    I'm starting to worry bout y'all. Sending lots of prayers!

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