I've posted about this on the Zetaboard too, so if you've read it over here, please allow me to repeat myself.
Quick background: AB is developmentally delayed and in EI therapy. One of his therapists recommended taking him to the Children's Development Unit at Children's of Pittsburgh to rule out any underlying causes. Due to an in-utero diagnosis of ventriculomegaly, the doctor ordered bloodwork and an MRI.
Bloodwork came back normal, but the MRI was abnormal, hence the need for the pedi neuro. Cue a month of worry and panic for Mommy.
We met with the doctor this morning. He was great, we loved him; he really took his time explaining everything. He didn't just talk about the MRI, he showed us every image. There was some possible webbing on the spinal fluid tube (can't remember the technical term), but a quick consult with a neurosurgeon said it was normal, no worries there.
So, AB's diagnoses are hypotonia, which is low muscle tone and a large part of his delay, and also periventricular leukomalacia which means not enough white matter in the corpus collosum. It all sounds scary, but it's the best possible scenario for his condition.
He will always have it, but with therapy and patience, it won't hinder him too much. Dr. C said that DH and I were very proactive and were obviously very invested in AB's care and that will do much for him. THAT meant a lot to me, because I sometimes have thoughts of "What did I do while pregnant? Did I do something or not do something when he was a newborn?"
The cause of AB's conditions are NOT genetic, so that is a relief. Dr. C said that I was likely exposed to an illness early in my pregnancy and did not know it. Knowing that it was a fluke makes me feel a lot better. Had it been genetic, there was no chance of another mini-vark, but now we can feel comfortable with the idea of another baby.
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"I never understood why blessings wore disguises. If I were a blessing, I'd run around naked." - Sophia Petrillo
Aardie, I read your posts on zeta. DGD was developmentally delayed (with low muscle tone) when she came here from Korea at 13 months. She was crawling and climbing but wanted nothing to do with standing or trying to walk, not even holding someone's hand to do it.
One of the biggest and fastest changes happened when she was fitted for ankle braces. Gave her the support and confidence she needed. At almost 3 1/2 years old, she is at or above her age level. She will probably always be a little uncoodinated but she is doing great. (her parents worked closely with CH of Philadelphia).
Early intervention will show you lots of dividends and it sounds like you're on the right track!
I just want to offer hugs, words fail me when I see such strong women fighting so hard for their kids well being. I'll keep you and your LO in my prayers!
