Thursday, July 28, 2011


I deliberated a long time for what to get Dax for his third birthday. Seriously, the boys already have everything, and the one thing I wanted to get for Dax was an expensive little computer that he would probably throw down the stairs and break… But we bit the bullet and got him the iPad 2 anyway. Ordered it the first morning it was released.

Best. Purchase. Ever.

Dax and Ty both took to it immediately. Colors, numbers, letters, videos, matching, fine motor, verbalizations, turn-taking, role playing…. What an amazing therapy resource in a tiny little package. We put on a screen protector and a protective case, and my friend Karen made an awesome bag for him to carry it in. Other than a scratch here and a scratch there, the iPad has escaped mostly unscathed… Even when thrown down the stairs or over the baby gate onto the kitchen floor.

Turns out even iPads have limits, though. Like being run over. Who knew.

The iPad was accidentally left on the roof of the car on Tuesday, and when we found it on the highway three hours later it was officially and undeniably dead. There are NO apps for that.

Ouch, my pocketbook.

Took it to The Apple Store today to see what could be done…

And they GAVE us a new one. 

As in, here you go, it's free. 

Holy crap.

Apparently they have a one-time whoopsy-daisy policy for replacing iPads that are broken by accidents… Like when they become road kill.

Thank you, Apple, for the amazing product and the outstanding customer service. You’ve just made me an Apple customer for life.

Monday, July 25, 2011

Big Brother, and Mother, are watching

I have always been anti-video monitor for my kids. Call me crazy, but I was afraid if we entered into the world of constant video surveillance we would never cross back over that line into “normalcy.” I’ve got friends with video monitors for their kids and they are constantly checking their (healthy, typical) children and, well, with Dax’s issues I was afraid it was a line I’d never be able to cross back over.

Sure, now he has a few health issues, but what about next year, and when he’s 16. Or married? There is a time to closely monitor, and there is a time to let go. I have tried to give himself and myself the liberty of letting go by only monitoring auditorily, and not visually, when it’s bedtime. It’s the same reason I don’t keep him on his pulse oximeter unless he is sick, or sleep on the floor in his room (anymore, unless he’s sick.) I want to smother him under the weight of my continuous protection, but I have to, for his sake and mine, give him some degree of normalcy.

But Saturday I bought a video monitor. It’s pretty awesome, and I can now stare at him while he’s sleeping and sleep even less than I already did because I can so easily look over and check on him… And here’s the story of why.

Tuesday in PT Dax fell, and he fell hard. My busy, rambunctious boy was *running* down a hallway *kicking* a ball, when the ball was caught under his foot and he went airborne, landing on the back of his head. We monitored for any signs of a concussion and he seemed fine. And seriously, the kid falls all the time so it’s not that big of a deal usually.

Wednesday Dax was fine all day. When I was walking with him in to OT that afternoon I noticed he was falling on the ground. A lot. But that’s not atypical for him if he’s tired or cranky or just doesn’t want to go to therapy. So no biggie.

When we got upstairs was when he really started to worry me. He was clingy and crying and he just. kept. falling. I went to grab the PT to come look at him, and we all watched together as he couldn’t walk, couldn’t sit, couldn’t stand.

And I’ll admit, I freaked out a little.

I took him to the ped right away and by the time we got out of the car at the doctor’s office he was FINE. Balance was back and he was perfectly happy. The ped checked for neurological symptoms again and, again, everything looked fine. She diagnosed a probable inner ear issue that he probably cleared himself doing Stevie Wonder head which he does all the time and that is actually the prescribed treatment for removing inner ear specks.

Phew! No biggie.

We go home and complete the bedtime stuff and go to bed, with dreams of sugar plums and therapy schedules dancing in our heads. At midnight Dax woke me up with his sleepwalking. (Side note, his sleep walking is hilarious. Since he still sleeps with O2, he’ll walk until the end of his O2 tubing and then stand there and cry. He will occasionally crawl under his bed or get stuck behind his chair, but he never sleepwalks any further than his O2 allows.) I put him back in his bed and took off his O2 in case he got back up because as cute as his short sleepwalks are, I always worry that he’ll get the tube wrapped around his neck somehow and choke… And then I went back to bed. Around 3AM I awoke again to hear him making a strange noise, so I go back to his room expecting it to be a nightmare. He wasn't in his bed. I turned on the TV for more light and found him lying face up under his brother’s bed covered in vomit and having a seizure.

And I admit, I freaked out a little.

He was hot, and he has febrile seizures, so I held him and comforted him and gave him some Motrin and within the hour he was fine, so I snuggled him in the bed with me so I could keep a close eye on his temperature and then we went to sleep. His brother had had a bit of a stomach bug with fever earlier in the week, so I had a pretty good idea of why he was ill. My only fear was he had aspirated vomit, and that dread of what could have happened if he’d had his head turned two inches to the right and he had drown. But he hadn’t, and he seemed okay, so, again, no biggie (ish.)

I got up and began preparing for the day. He was resting well with no temp, so at nine I would give him another dose of Motrin to make sure we stayed on top of the fever before it came back. I heard a strange noise from the bed and found him seizing again. This time his temperature was 97.4. Hmmm, that’s new.

I called the ped and she had us go to the ER at the children’s hospital to get a CT just to rule out a slow bleed from the fall on Tuesday. I was positive we’d be in and out but packed a change of clothes for both of us just in case of another puking episode. I transported him with no issues and he made eyes with the ER nurses and wooed them with his renditions of Queen and Elton John, his current favorite musical artists. I repeated the story of what our week had looked like about 74 times because it’s July and residents are mostly useless, and when I could tell Dax would be having another seizure soon I let them know one was coming in the next little bit. Five minutes or so later it did, but this one didn't stop. For over twenty minutes my baby lie there dusty in coloring, mostly non-responsive, and seizing. Two doses of Ativan didn’t do a thing, but finally some Keppra got it under control. While he was out they completed a lumbar puncture and the ER attending told me the CT results had come back with what appeared to be two new ischemic areas, possibly indicating a stroke.


So we sit and wait with no idea what on earth is going on except that my baby isn’t acting like my baby anymore. My friends were amazing; they showed up bearing hospital necessities and distracted us by helping us laugh at the downright ridiculous things that residents say and do. (A personal favorite was from an adorable medical student we actually liked. He says, after obviously not reading the chart, “How was your pregnancy?” to which I replied, “Short,” and we (as in me, Shep, and Nancy, not the cute little student) laughed. I explained he was a 23-week preemie who survived his twin sister who was born at 22 weeks, to which he asked, “Oh, really? How is his sister doing?” and I answered, “She’s not.” Again we laughed [inappropriately I suppose] as his brown face turned slightly purple. Poor guy, but, seriously. ) At any rate, he was eventually moved to a room and we waited for answers. It was finally determined that enterovirus had shown up in his spinal fluid, indicating viral meningitis. Yay! An enemy with a name, and probably the best case scenario for what we were experiencing. An MRI (with NO new ischemic areas, and no other changes from his initial MRI done at 8 months) and a normal EEG later and they were ready to send us home.


My baby was lying there mostly nonresponsive, crying when he was awake, unable to sit up independently, running a temp, and requiring occasional oxygen support for his frequent desats. Yeah, no. We’re not going home until I’m sure he’s not going to get worse before he gets better… To which the attending replies, “What, is this not his baseline?” No, this is not his baseline. Forget the chart, forget the MRI, remember the person. NO, I repeat, this is nowhere near his baseline. “Oh, well then we’ll keep him to observe overnight and hope for some improvements.” Yes, we will.

3 AM I am awakened by the stirrings of a little boy who looks at me and actually sees me and smiles with this look of “Oh my goodness, Mama, where have you been?” and he plies me with dozens of kisses. He sees the green lights on the bed and yells “GEEN!” and dives to push the buttons. He wiggles so much his leads keep popping off and he yells “BEEP BEEP BEEP” each time they do. He sits up, and he smiles, and he sings, and he responds. Oh, thank you God, my boy is back.

He settles again, and by the time we get up and at ‘em he is able to weight bear for the first time since Thursday, and even starts attempting to walk. He stumbles and falls, but he keeps going just like he always does. The attending from the previous night sticks her head in and I hope was able to learn a lesson in not pigeon-holing children without first asking about their typical behavior. And then we went home, just us and a script for an anti-seizure med (which I argued about with the neuro attending for 15 minutes of my life I’ll never get back, but that’s a post for another day.)

I got Dax settled, went by to pick up TyTy, and straightaway went directly to Target and unapologetically bought myself a video monitor.

Hopefully one day I’ll have the courage to give it up. Hopefully one day I’ll be able to sleep soundly all night without worrying that my kid will drown in his own vomit, or gag on drainage he just can't clear, or choke on his O2 tubing, or any of the other random assortments of medical stunts he tries to pull… But until then… Be aware, little boys… Mama has eyes in the back of her head, and she can see through walls, too.

Sunday, July 24, 2011

Sweet Baby's day in court! *UPDATE*

Hi friends! I have a blog post a'brewing, but before my life got in the way I wanted to post a special request for prayers and happy thoughts. Remember Sweet Baby?

After much, much ado, the termination of parental rights hearing starts TOMORROW!

What a very big, very important day for a very special, very adorable little boy.

I'll update you all as soon as it's official!


It's official!!!!! Sweet Baby is now an orphan :) They still have to wait on any appeals, but the deal's almost done. Team Baby will soon be getting their "Bill of Sale" (channeling Pete's Dragon) that he's all theirs :) The "biohazards" didn't even bother showing up for court. Finally they did something good for that sweet baby boy!