Monday, May 19, 2014

Just Being "Normal"

I am nervous to write the words down - but things are going suspiciously great right now.

Well enough that I feel good writing about it without worrying I'll jinx it somehow.  Little Man comes home from school every day nice and exhausted and ready to relax with us.  We've gotten into a great routine where he walks over to the dinner table when he gets hungry and we sit down to dinner together.  He goes to bed by 9:30 and stays in his room semi-quietly until we get up together for a bath before school at 7:30 in the morning. We've manufactured a new duct-tape belt and anklet set that prevents diaper removal that has been working for over a month.  He's progressed in his usage of the iPad to make some choices with food or television.  He's been more affectionate and open with us and his extended family.
Super fancy duct tape system.  And serious bed-head.
The only thing out of the norm we've done recently has been a "quick" (Hahah- with travel it was a 6 hour day) appointment for a baseline MRI for Little Man. His neurosurgeon assured me that Little Man wouldn't need sedation for the procedure, and I assured him that if he thought he'd get Little Man sitting still for ten minutes that he was batshit crazy.  We were both wrong I guess, because Little Man did manage to get his MRI done without sedation, he just needed Hubs laying across his chest in the machine with him. Which sounds like it would be really stressful and scary, and maybe it was - but Hubs took it like a champ and said it "wasn't that bad".  He did admit that stuffing two people in an MRI machine, one of those people wiggling and screaming bloody murder, was possibly a little claustrophobic.  Still, better than we expected for sure.

My big kid, looking little for a moment.
After the MRI was an appointment with his surgeon turn back on the shunt.  I didn't realize that they technically don't turn it off before the MRI starts, they just adjust it afterwards since the machine changes the magnetic setting of his shunt. The appointment was quick and easy, although when the doctor read the MRI he said that Little Man's baseline still shows more fluid than normal around his brain.  Basically his new MRI looked very similar to the one he had during his shunt failure in 2011, which was a little disconcerting to me. The doctor didn't seem overly concerned but he did tell us that if the shunt failed again there would be no real way to tell unless Little Man displayed symptoms (ie; another year of nightly vomiting episodes).  Of course, that morning before the MRI we'd noticed Little Man's breath was a little gross, and he spent the weekend afterwards being sick and pukey, so we're on high alert wondering if everything is okay with his shunt.  But he went to school today and seems to be on the upswing, so I think it might have just been a bug.  *Crossing fingers*

Doesn't that sound like life is totally normal and great?   I guess maybe my baseline for what is normal might also be a little skewed.   But the MRI was genuinely nothing but an expensive and fancy checkup, because things are going *deep breath and holding* really well.

Not to be left out, Baby Vegas is also doing fabulous.  He's been eating two or three meals of puree a day now, and loves him some puffs and rice crackers.  He doesn't crawl anywhere, he usually scoots on his butt until he reaches whatever he wants - which lately is the laptop cord or the television remote.  During the time Little Man is at school we watch our two favorite shows, The Daily Show and Colbert Report, and then turn off the tv for a long morning nap.  After we wake up we just hang out and play quietly together all day long. His face just lights up whenever he sees his Daddy come home from work or hears him on the phone, and he definitely has him wrapped around his chubby little finger.  He rarely cries or fusses, and I only know he's teething because he has had the worst runny nose for the last few weeks. Oh and the two teeth that have shown up!   He sleeps through the night from 9:30 to 7:30, every so often having a night where he wakes up and fusses for his pacifier to be put back in. It has been a marvelously normal and average babyhood so far for this little guy, and I'm loving every minute of it.  I love being home with him, watching him grow and learn. I love being the Mommy to two amazing little boys. 

Shopping, everyone does it.

Yes - Life is (our) normal.  We're doing great.  I'm trying to enjoy this time without worrying that the other shoe is going to drop and things will go back to crazy.  But if you'll excuse me, I have no time to worry right now, it's naptime over here!

Thursday, May 8, 2014

Just keep stimming, just keep stimming... what do we do we STIM and STIM

If you aren't too familiar with the special needs lingo, "stimming" is short for self-stimulatory behavior.  It is seem a lot in autistic kids - the flapping of hands, rocking back and forth, spinning around...  The list is endless.  Technically most of us running around this planet stim in our own way, maybe you twirl your hair or jiggle your leg under the table when you're anxious (that's the one I do that drives my godmom crazy!).  The difference is that most of the time when we notice ourselves doing these things we can and will stop them. Kids like Little Man don't have that "off" switch to stop stimming and so... they don't.  They can stim all day long and since it feels great, they see no earthly reason to stop just because we say - hey, watching you do that is driving me insane and/or is a terrible idea!

I've written about a few of Little Man's stims before, but as he grows and changes so do his stims.  For a long time he loved to rock and bounce.  He still occasionally does the jumping on the couch but as he's gotten bigger I think the pillows aren't at the right height for his head any more and so he has really cut back on that particular stim.  One of his more difficult ones to control was when he liked to put his hands to his throat and hum, sometimes pinching the skin of his neck while he did it.  I'm very happy to say that after approximately 10,000 times of us saying "Little Man, NO HANDS!" and redirecting him to other choices - he no longer does this particular stim.  HURRAY!   He has moved on to constantly having his hands on his ears, not a stim really, he just avoids paying any attention to us or the noises around him this way.  But with his hands on his ears he doesn't have time to hum and pinch.

His newest obsession is the green music button on Vegas' exersaucer or the button on Vegas' bear-toy learning thing (obviously I am a pro at describing children's toys).  As far as stims go it's pretty benign. It's just annoying. as. crap.  Every five seconds you hear the horrible screech of some sort of Chuckie child singing "I AM A BEAR A HUNGRY BEAR A HAPPY BEAR A SLEEPY BEAR"... And eventually after a few hours my eye starts to twitch and I get really pleasant to my husband.  So we turn off the exersaucer and hide the bear, and Vegas' gets the short end of the stick on having cool musical toys because his brother steals them and makes them unbearable for the rest of us.

We have a big basket of Vegas' toys that I can take out for him to play with during the day and hide when Little Man gets home.  It's the only way to prevent Vegas' toys from being chewed up and spit out, literally.  I accidentally left out a set of those teether car keys and when I found them an hour after Little Man had gotten hold of them they were completely destroyed.  *Sigh* Chewing is still Little Man's biggest sensory thrill.  He tears the crap out of board books and chewy tubes and pillows and window ledges and ... really anything that is within biting distance.  Surprisingly he still has pretty nice looking teeth, but we'll see when he starts getting permanent ones...

I leave you with an outtake of a photo I took of the boys "playing" together (also known as, 'How many times can I press the button until Mom moves me away from the toy?').  I call this outtake "Lemme See Those Teef!"