The Plot Thickens

I won’t bore you with the details of where I’ve been the last month or so. Suffice it to say it’s been a long couple weeks.

I thought Owen was going to be the lucky one here. The neurologist has declared him to be autism-free for the time being (although she recommended another eval after he turns 3 when it can be a little easier to spot Asperger’s). He has been discharged from speech therapy, and although he has started OT, he’s making great progress. Fast forward to Tuesday’s follow-up with the neurologist. I was expecting just a quick visit to update them on his progress since his visit in May. Imagine my surprise when she tells me she has finally been able to access his MRI from last November, and found something abnormal. He has been diagnosed with a Chiari Malformation. My first thought is to be completely terrified. Especially after she writes the order for the pediatric neurosurgeon and explains that he may need a surgery called a “decompression” in which they will enlarge the opening at the base of his skull. My next thought is to be really furious, because he had this MRI a year ago and they told me at the time that it was all clear. Why didn’t someone catch this last year? It turns out that this is the most likely cause of all his developmental delays, his feeding trouble, and his recent unexplained bouts of inconsolable crying (he’s probably having headaches but can’t tell us). My poor baby has been suffering, and it’s because they didn’t properly read the test. Seriously, why even DO the MRI if you’re not going to catch these things?

We meet with the neurosurgeon on November 27th. In the meantime, I’m trying really hard not to research this too much, because I don’t want to freak myself out too badly until I know what we’re dealing with. I have asked a few on-line friends who are dealing ith this condition for their recommendations of questions to ask and tests to request, but other than that, I’m trying to leave it be. Yeah, that’s not going to last long, lol.

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1 Comment

  1. Annette said,

    November 10, 2006 at 11:46 pm

    Steph,
    After reading a little bit about what the neurologists are talking about I can completely understand why you’ve been M.I.A. from the blogging world. I love hearing about Reed’s progress but, am hoping and praying you get the answers you’re looking for and need to continue believing in his progress.


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