Monday, October 24, 2011

leaps and bounds...almost.

Those monkeys of mine...they're taking off, I think.

The girl baby is pulling up like crazy, and cruising along furniture, as long as the furniture is soft. She's saying "Mama," I think for real now, and she laughs like a crazy person whenever I say "no" or "ouch."  She has little curls behind her ears...and wisps in front. It feels weird to look at yourself and say, "wow. She is gorgeous."

The boy baby. Holy cow. Babbling in full effect. He can now get himself from belly to sitting without help....he does however require motivation. He's gotten himself to kneeling. He can (brace yourself) stand if you set him up  holding onto something!!  He even pulled up on my mom's legs today in an effort to dethrone the girl baby from that place of power. His physical therapist is beyond impressed, and pointed out how good his "pincer grasp" is and how well he points....I knew he could point, I just thought it was only at his brain.

One of the research projects on corpus callosum disorders is interested in us!  Interested in that I filled out a questionnaire and they've requested a copy of his MRI. I'll be picking that disk up tomorrow...and while I won't have a clue what I'm looking at, I'll scour it before I send it on, make a few copies, and *then* forward it. The study is in San's a shame they won't fly us out March. It would be a nice break from our Ohio winter.

I had a painfully long and apparently pointless conversation with Baby A's case manager...a person assigned to "help" us "manage his care," a service billed as one that will help me feel less scattered as we flit from one doctor to the next PT/OT visit...but somehow....didn't. I called to see if we needed a referral for a second (third) neurology opinion, and after-not kidding-35 minutes-determined that we didn't need the referral but she said to "give the first neurologist another shot."  I may be overly cynical, but it suddenly seems like our case manager's job is to save the insurance company money.  So, we've got our appointment set with the other pediatric neurologist. I found one that specializes in corpus callosum disorders, so at least I think I've found the right guy.

I've read some more about the different types of disorders, and the more I read, the more wrong the first neurologist's opinion seems. From what I can gather, my boy's got about a 30% chance of being "normal." So I get to sit on this and freak myself out more until our appointment with the third neurologist in January. Yes, January. We do see both the first neurologist and the neurosurgeon during that time frame...

It's the waiting that's killing me. I get so many "treasure this'll be tearing your hair out before you know it"s that I could scream. I get so angry....there's something wrong with my kid's brain, and only time will tell us just how "wrong" that something is. My gut tells me that he's okay. And even if he's not okay, he'll be okay. We'll be okay.

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