Wednesday, January 2, 2013

"Beebs Disorder"

(photo from here)

I thought by the time I got to writing this post I would feel solemn and serious. Bro however has just finished telling me about his bad dream where Sadies Physical therapist jumped in our car and locked us in her house (he calls the PT office: Rachel's house). Sadie started giggling uncontrollably and then both my children found a couple kazoos and proceeded to hum/play "We wish you a Merry Christmas". It just reminds me that I could have so much more to worry about. Not meaning that I'm actually scared of Rachel holding us captive for physical therapy (although I wouldn't put it past her) I just mean that I'm grateful my kids are happy and silly and may or may not have a future in the art of kazoo playing. Anyways, here is my serious news:

Sadie's neurologist called me earlier in December to tell me that she has a mitochondria disorder. ((((confiscating kazoos now)))) This means that the mitochondria in her cells are not processing food into energy which is the purpose of mitochondria. This totally explains why somedays we have Snail Sadie and some days we have Jetpack Sadie. This also means she most likely does not have cerebral palsy and that her Autism diagnosis is most likely a separate entity. This also means that her spasticity is again a mystery. So basically Sadie has a mystery diagnosis that presents as Autism neurologically, Cerebral Palsy physically and includes a mitochondria disease to boot. Until otherwise discovered I am taking the liberty of calling it "Beebs Disorder". 

Now we can't get into the specialist for another month or so but from what I've read there is nothing we can do. From what I have experienced Sadie has had some really good walking days and I want to figure out why. I feel like I have a million questions and theories reeling through my head. I am determined this year to figure out all I can. I am on a mission to HEAL my little girl. I know I can't cure her but I have a piece of the puzzle to go off now. I am determined to stop wallowing in my fears for her and stop getting emotionally bogged down. Reading all that google has to offer about a mitochondrial disorder is scary. It has left me a little depressed for the last month. I'm ready to snap out of this! I hope I can share my findings and find others going through similar situations. I am hopeful today. I'm hopeful for this New Year:)


  1. Lily started back to school this week and she has been simply AMAZING! She has just rocked it the past 3 days since Christmas break. Her teacher asked me what I had done over the break to "improve" her so much. My profound answer? "I have no idea." Some days are just better than others and so many times, I can't figure out why.

    Wouldn't it be nice if we not only knew what it was but that it was also something simple like..... peanut butter, for example.

    "Why is Lily so calm and focused lately? She's doing such a great job."

    "Oh, it's peanut butter. I just feed her a little every morning and wahlah, she's calm all day long."

    A mom can dream, right?

    Praying that 2013 is the year you get some answers for sweet Sadie.

    By the way, I LOVE the pics of her and her brand new bike. Joy!

  2. I know what you mean about taking on the depressive emotions when it comes to the kiddos, but you have so much to be thankful for and celebrate the milestones she has made (as you do well on here sometimes). You are such a great writer expressing how you feel that I can relate. I like that you have given it an ambiguous name because no matter what it is, you are always going to do what is best for your kiddos. Hope is a very strong emotion that can be empowering, so embrace it! I am right there with you cheering you on, Mama!


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