Saturday, August 28, 2010

CDC appointments

No, it's not the Centers for Disease Control.  To us, it's the Children's Developmental Clinic.  One of those "lovely places" where you go for a big pow-wow on your kid and a gazillion docs are in-and-out for hours on end.  Ok, maybe not a gazillion, but I was completely serious about the hours!

Arrive at 8 AM.  A touch late thanks to some weird Omaha traffic.  I know it's rush hour, but I've NEVER seen it like that unless there were accidents.  Oh well.  Not like I had a hover craft handy and could zip my way past everyone. 

After all the initial blah, blah, blah, get the kids stats (J - 34 lbs, 39 inches.  M - 23 lbs, 29 inches.) and get locked away down the hall.  It's nice that we don't have to pick the kids up and transport them from room to room, but man, it sure get stuffy, boring, and SMALL in there.

So the general info on J:  Diet says we need to watch his protein, calcium and vitamin D intake.  Bump 'em up a notch.  OT wants us to think again about taking him to that other preschool.  Also we're looking into a chair for him.  Like a big stroller or mini-wheelchair.  Darn kid is kinda heavy to be toting around on my hip for too long!  Pedi said Robinul for drooling (NOT gonna do it.  Sheesh, there's no medical necessity for it!  Just social.  And um, if you're worried about my kid drooling, how about all those kids that pick their nose and eat it?).  Neuro wanted to check Keppra levels - all ok.  Ortho & PT say keep it up.  Walking with the walker is good.  No orthotics now.  Psych says head banging could be so many things.  Ignore him completely when he does it.  He won't severely injure himself.  Genetics is clueless. I will get some more testing done with me, but I told them that barring an 80%+ chance of figuring out what is going on with him, he will NOT be going through anything more invasive than a blood draw from here on out.  He's been through enough.  And he's awesome, so what's the point?

M's turn:  Neurosurg said see ya in a year unless she shows symptoms.  Ortho thinks things look ok, just keep an eye on her ankles.  OT wants a chair for her to recline and play in.  PT has us looking into a wheelchair.  Pedi needed to check her thyroid levels since she gained so much weight since she turned one.  Never mind that her fundo was 2 months after that appointment, so she stopped regurgitation 1/2 the calories we were putting into her!  Duh.  Social work checked in.  I offered to be a political nut letting "our representatives" know how they are screwing families with their "don't have a clue how it really affects patients" Medicaid changes.  Asshats.  Neuro FINALLY gave me the CP stuff.  Not that I wanted my girl to have it, but come on.  I'm not stupid.  Her signs are textbook!  Right weaker than left.  Shaking of the foot.  Clenched hand.  Weak eyes.  Blah, blah, blah.  She's at highest risk for lower extremity problems (ie - her legs, which we already are well aware of), gross/fine motor delays, learning disabilities and attention issues.  Her risk, while still a possibility, for cognitive problems is much smaller.  It sounds like a downer appointment, but it really wasn't bad.  I kinda knew what was coming, and he did end on a more positive note.  Besides, I did ask for it.

After 5 hours, go downstairs to rehab for carseat and wheelchair stuff.  At least M like the eye candy there.  The guy was on her left, so she actually turned her OWN HEAD to the LEFT to look at him.  I said for the well-being of my daughter, he now needed to live in her room, only on her left side.  :)

After another hour in rehab, on to the lab for the blood tests.  Yeah, that was fun.  At least JJ was there.  She was one of our favorite lab girls when M was still NICU.  She kinda screeched when she saw M, not wanting to believe she had gotten that big.

And after 45 minutes (now 2:45 pm), I passed J off to David.  M and I took Nurse Lynn home.  David was taking J to get a hip and spine x-ray.  Just a follow-up for scoliosis.  Doc noted a bit of a curve 2 years ago, but it's not really getting much worse.  We'll hear back on that in the next week or two.

We all came home and crashed.  I would have made it, but I accidentally skipped the coffee bar that morning!  I'm sure there's more that I'm missing, but I'm still fried.

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