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.

Thursday, October 13, 2011

la La la

The boy monkey is "developmentally delayed...." this is old news. He's not crawling, he's not talking, and he's not been babbling as long as "they" would like. Yesterday, that boy baby of mine got himself from his tummy to sitting. My sister and mother cheered him emphatically, congratulating him on such a stellar achievement. He looked back at them and blinked as if to say, "what's the big deal?"

These babies...they get so many "I love yous" in the course of a day....They are so wildly loved, and they love to hear about it. They always respond to an "I love you," with a quick snuggle, a pause in a tantrum, or just an endearing gaze. Tonight, in response to my "I love you," that boy monkey of mine said back to me "la La la" in a rhythm identical to mine. He loves me back, and wants me to know. -swoon-

Baby B and Me....

A challenge of parenting twins, especially when one's needed much more attention than the other, is a worry that one isn't logging as much mama time as the other. All the nights I've spent in the hospital with the boy baby, all the evenings at physical therapy, the extra time working on muscle strength and reflexes on the floor...the nights I slept with him on my chest when he was first sick...all that time he's in my arms, the girl baby isn't. From the very, very beginning she's been more independent....the day they were born she didn't even need to stop and say hello before being whisked away.  Now that she's crawling, she's growing less and less needy. But I worry that I've bonded more with the boy baby, and that the girl baby and I won't have the kind of strength in our relationship that the boy baby and I have. Tonight, though, she was extra tired, and was offering up a rare snuggle. I took full advantage. We spent time looking into each other's eyes....and I saw my own. No one has ever resembled her mother more than this child resembles hers. We don't need the extra time, the wiggle worm and I, because we already understand each other. It started out that way.

Tuesday, October 11, 2011

can you trip over a milestone?

(author's note: I knew I would be bad at updating's why I've never finished that novel I've been working on...)

The girl baby has been pulling up for about a month here or there, but Saturday it was for real and stuff got real real in a hurry. The little woman has no fear. She pulls up, plops down, stands there showing me a jazz hand and takes off, crawling fastfastfast with her tongue out looking for dog hair or electric things to chew on.  It's wonderful...though she's still behind her actual age of 13 months, she's right on target for 11 months, her adjusted age. (Preemie mom talk....adjusted age=time since due date-time till due date. or something like that. They were due November 18, 2010, and we're about a month out from a year from then. Got it?)

The boy baby-this is huge-started babbling in earnest today. He's been "vocalizing" for a while, though without any discernible consonants or syllables. But there he was lalalalaing and babababaing away...he had to tell me about his day...and what a day it was, apparently. This is big for him because I've learned in my research about corpus callosum  disorders can frequently be autistic....the fact that he's babbling using syllables, assuming he does it tomorrow and the next a good indicator that may be one issue we can start to worry less about.  Mobility wise, although he's still not crawling, or even getting himself to sitting from laying, I think he's close on both fronts. Our physical therapist does too. He's getting stronger daily it seems. It's almost like he's lacking motivation...why crawl when rolling is so efficient?

The way the corpus callosum works is that it is a messaging center between the right and left halves of the's how most people develop good emotional and intellectual intelligence. I hope to learn more about this...he's not eligible for any studies currently being conducted, but I check all the time and am on the mailing list for the NODCC (National Organization for Disorder of the Corpus Callosum.) I keep thinking...maybe she's wrong? Maybe my corpus callosum is thin, too? Maybe their father's is? The rest of us haven't MRIs to look...and I'm curious to know. That's a task for another day.      

The boy's physical therapist told us yesterday that our insurance will only cover twelve more visits through the end of the year. He goes twice a week, so this is obviously only going to get us through another month or so. She suggested talking to BCMH, the Bureau for Children with Medical Handicaps. It works like a supplemental insurance, and if he's qualified and stays qualified, he'll be eligible to stay on it til he's 21. It's through the county, and remarkably I got a call back within an hour! A nurse will be out in a couple of weeks to assess him and determine his eligibility. He'll also be talking to the neurologist who gave him the iffy diagnosis. I cried on the phone with her...I don't want my kid to have a "handicap" and qualify for special programs. I want him to smart and healthy and strong. I want him to be helping his sister destroy the house.

But then I see him and all is well again. He hugs, and squeals with laughter, and is as perfect to me as any child has ever been.