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.

Friday, August 27, 2010

OYA - homecoming

One year ago, we brought our miracle girl home.  After 150 days, she was coming home.  We had enough wiring to at least stretch across the county.  Would we remember how to work all this stuff?  Would we be able to keep her alive, like the amazing docs, nurses, and rest of the staff did?  Man, I didn't know.  They sure trusted us a WHOLE lot more than I thought we deserved.  But one thing I did know for sure - she couldn't possibly have been any more loved.

Fast forward.  One year after coming home, she's still showing she's such a fighter.  At least five hospitalizations since then.  Two major surgeries.  Back on the vent with pneumonia.  You know, it's become a bit of a joke - how long can we be at Children's before we see someone we know.  But through it all, she smiles and flashes those gorgeous blue eyes.  Yeah, our life isn't as easy as we had planned.  But it is so worth it.  Every ounce of stress can't touch the blessings this sweet miracle has bestowed upon us.  We are so lucky.

Sunday, August 22, 2010

Baptism coming

Maryn is getting baptized in the Catholic Church on September 1.  It's important to me.  But some people are concerned that I'm forcing this religion on her.  Here's my take....

She was baptized to God the night she was born.  A very special Lutheran pastor had the honor.  But yes, I still want her baptized Catholic.  It is the religion of my family, of her namesake.  But I don't have any intention of "making" her Catholic.  That is up to her.  As she grows, she will learn the ways of many religions.  She will get to choose where she fits in best and what seems right to her.  She will make the decision on her own.  I just want to keep the door open for her if she does decide Catholicism is the direction for her.  I'm giving her that option, so it's not a big headache/hassle later on.

But no matter her choice as she grows, my daughter will know the love of her parents, her family, and the Lord.  Every day.

Saturday, August 14, 2010

Welcome back

To work.  Joy of joys.

I wish it were that simple.  Back to work for just over a week now.  And how do I get greeted on day 2 with students?  A phone call.  It was from home, so like we had discussed, I let it go to voice mail.  If it's an emergency, don't leave a message and call right back.  It went to voice mail, so I figured I'd check it when I had a chance. 

Wrong decision.  Jaime had another seizure.

Just before breakfast.  Rigid for 20-30 seconds.  Again.  Fuck.  I talked with MIL about how he was doing shortly afterwards.  He was out cold for only about 30-45 minutes post-seizure this time.  While that's a big improvement, I'm still pissed that it happened at all.  His pedi knows about it now, and she suggested we talk to neuro.  We have an appointment with neuro on the 25th.

And now I was supposed to think about teaching too?  Yeah right.  Priorities people.

Friday, August 6, 2010

Into August

I hereby admonish myself for being a slacker.  There, are you happy now?  20 lashes you know.

Actually, things have been pretty crazy.  And now I'm stuck back at work when, of course, all I'd rather do is admire my kids' latest accomplishments.  So the last 3 weeks in a nutshell...

1.  Maryn's benefit was a HUGE success.  I didn't expect nearly that many people there.  It was so packed I sadly didn't make it around to everyone.  But M was a star.  Just hanging out the whole time.  Cool as a cucumber.  Figuratively at least, as the weather and amount of people there made the room feel like a sauna.  And big brother was a hit too.  Later in the evening, he walked me over to the band and started dancing in front of the lead singer.  So cute.  First order of business after the event was over was to get the Princess a new car seat. 

2.  New car seat needed because since her May surgery, she's become a chunk.  Over 22 pounds now.  In fact, on the REGULAR baby chart for a 16-month old, she's at the 33%.   And she's only 7% for length.  Ugh.  The dietician - NOT her regular one - wants to switch her to a different 30 calorie formula (right now she's on 24 calorie).  WTF?  You want my kid to be obese on top of her other issues?  I got her to come down to a 27 calorie mix, then asked my pedi about it.  She checked further, and their rationale was M's going to need the additional calories as she moves around more.  Um, right.  M doesn't walk.  She doesn't crawl.  She doesn't roll over.  WTF kind of moving are you talking about?  Seriously, it could be years before she's mobile, and you just want to pack pounds on her in the mean time?  No way!  So Daddy and I have talked, and we aren't going to up her calories right now.  When she starts moving, sure.

3.  M is eating 2 stage 2 baby foods a day.  She hates it.  Lots of gagging and retching, especially as we get started.  And it sometimes leads to her spitting up again.  Which is not supposed to be possible.  So something is up with the fundo.  Fuck.

4.  J has been seizure-free since we started meds.  I don't like the meds, but if it helps him, Mommy will deal.

5.  He has also be chatting up a storm.  He has reached that mimicking stage, so please be careful what you say around him!  You never know what's going to come out of his mouth.  Oh, and those questionable things you think you are hearing are "sock off" and "faker."  Try not to giggle too much.