Kintropy In Action

"Gabriel, come here!  Two of the Beatles are on t.v.."

Gabriel came and sat with me on the couch.  There they were:  Paul and Ringo being interviewed on CNN for a one-year-anniversary Love special.

"There's Ringo.  There's Paul."

Gabriel accepted my assignments and watched briefly.  CNN played a photo montage to Beatles hits.  I continued.  "There's John..."

"He was shot," Gabriel added.

"Yes, he was.  But this was when he was alive.  There's George."

"He got sick and died."

"Yes, Gabriel, he did."

"Oh, I know that song!" Gabriel grinned.  All You Need Is Love was playing.  "Look!  You can see the words coming out of John's mouth."

The camera had a close up of the "live action" John Lennon (i.e. not the cartoon version from Yellow Submarine) singing.  Gabriel stared at the t.v., enthralled.

Hannah and Mom joined us in the family room.  After a commercial, CNN played another photo montage, and I sang along with the Beatles.  Hannah smiled and clapped, encouraging me to continue.

Gabriel's toys soon called to him, and he turned away from the t.v..  Hannah and I continued to watch and sing.

By the end of the segment, Gabriel, predicatably, was climbing all over Mom on the couch (his version of cuddling).  He noticed the name of the Cirque show in the bottom right corner.

"Mom, it says, "Love."  All you need is love."

Yes, my son will grow up knowing who Paul, John, George, and Ringo are!  Dad couldn't be more proud. 

-- Dad

P.S.  If you haven't seen it yet, I recommend Across The Universe to you.  Great film:  really should become a midnight showing cult classic, I think.  We'll see, though. 

Posted by Dad at 08:21 PM | Permalink | Comments (0) | TrackBacks (0)

Walking into Hannah's room is kind of like walking on to the bridge in Star Trek:  lots of lights and beeping things.  This morning, her ever-tempermental pulseox sounds its alarm repeatedly.  Its descending tones cycle like a siren.  Her feeding pump adds its urgent alarm that food is almost empty.  Add the classical station, which is playing something with heavy castanet usage (which initially sounds suspiciously like Hannah is grinding her teeth to raw nerves), and its quite the made-for-tv adventure.

Hannah, miraculously, sleeps through it all, but can the Klingon Bird of Prey be far behind?

-- "Proud to be a Geek" Dad

Posted by Dad at 04:55 AM | Permalink | Comments (0) | TrackBacks (0)

I woke before the alarm.  Something was stirring... and it wasn't a mouse.

I could hear Hannah's pulseox beeping from our bedroom.  I walked down the hallway and popped my head into Hannh's room.  There she was, on her stomach, propped up on her arms, smiling at me.

Ready for the Daddy shift.

"When did she go to bed?" I asked.

"Nine," Janette said.  "Maybe ten?"

Time for Daddy math.  Four-and-a-half hours of sleep.  Yep, she'd be up for a while.

So here we are at 4am.  My singing voice, my consoling voice, my encourage-you-to-go-to-sleep voice has long worn out.  I've used the electronic babysitter as my singing replacement for the last hour-and-a-half.

Now I'm preparing to escalate.  I'm about to switch to music only (no video), and it's going to be soothing classical music.  Hold on while I switch over....

Now listening to XM classics.  Hannah is decidedly avoiding the issue, looking around her bed, back at me.  Maybe if I feign disinterest, she seems to say, he'll give up and put on another video.

This is our dance.  Cue the crying.  It's time to work through our process.  Toss pacifiers.  Give Dad hugs when he picks them up for us.  Cry when he walks away.  Smile when he returns.  Sign correctly (not an everytime thing) for songs.  Daddy gives in and sings one song.  More hugs.  Daddy walks away.  More crying.

We certainly both know the steps.  Hannah is eyeing me from her bed now, calling me over with brief shouts through her trach.

Hannah, care to dance?

-- Dad 

Posted by Dad at 03:19 AM | Permalink | Comments (0) | TrackBacks (0)

Yesterday, we went to see Hannah’s heart doctor. He did an echocardiogram; Hannah no longer has a hole in her heart and no longer needs any special consideration on that front.

Yeah!

--Mom

Posted by parents at 10:23 PM | Permalink | Comments (2) | TrackBacks (0)

Thank you family for the joy you bring to the kids days every week.

--Mom

Posted by parents at 10:44 PM | Permalink | Comments (0) | TrackBacks (0)

Janette and I have been blogging almost a year now.  In that first month of blogging, April 2007, I attended a fantastic conference focused on inclusion for children that experience disabilities. Janette had attended the year before.  We both agreed the conference was informative, inspirational, and helpful.

As Janette and I prepare to celebrate 1 year of blogging, All Born In also swings back around for its 3rd year here in Portland, Oregon.  A friend of mine (and one of my former carpoolers for Partners In Policymaking) is one of the organizers.  She, Angela, the Northwest Down Syndrome Association, and several generous sponsors and stakeholders have put together another great day of speakers and workshops.  This is a great opportunity for us – parents, families, educators, professionals, and self-advocates – to retool and get charged up about school and community inclusion.

Here are the details & a link to the registration form.  Definitely check it out and attend if you can:

All Born In - Saturday, April 26th (8:30am - 5:30pm)

Portland State University campus 

Should you have questions, feel free to check out the NWDSA website and/or drop Angela Jarvis-Holland an email (ajarvis-holland@nwdsa.org) as needed.

-- Dad

Posted by Dad at 08:28 PM | Permalink | Comments (0) | TrackBacks (0)

A couple years ago, Robert picked up the Beatles movie Yellow Submarine on DVD. We sing Beetles songs to the kids a great deal, so Robert thought the music combined with the bright images would amuse Hannah.

I thought it was a good idea, but it sat on our shelf for years unopened.

Last week, Gabriel noticed it. He wanted to watch it. I loaded it the player thinking its surreal quality would turn him off in about ten minutes.

I was wrong; he loved it. He watched the whole thing. Hannah was enraptured with it, too. Now everyday, for several hours of the day, he says, "Let’s watch Yellow Submarine!"

Meanwhile, I’ve just bought Enchanted and want to watch that all the time. I don’t want to watch Yellow Submarine. Really, I don’t. Not at ALL!. Plus the blue meanies scare me.

--Mom

Posted by parents at 09:18 PM | Permalink | Comments (0) | TrackBacks (0)

Zadie, Hannah’s grandfather, finished one of the dresses I talked about on February 2nd. I think she looks adorable in it. Zadie is an amazing craftsman.

Thank you, Zadie.

--Mom

Posted by parents at 09:25 PM | Permalink | Comments (0) | TrackBacks (0)

The party was a success! My goal was to get Hannah in the caterpillar. I did.  She and I hung out inside for ten to twenty minutes, greeting kids as they came through. She laughed at seeing her friends outside of school.

We even tackled the hill in the middle with a steep slide. I handed her up to Gabriel, and he let her go on the top before I was ready. She was laughing even though she had landed on her classmates.

All in all, it was a fun day.

--Mom

Posted by parents at 10:04 PM | Permalink | Comments (2) | TrackBacks (0)

2:15 a.m. - Hannah's room.

I'm typing on my new e-bay'd AlphaSmart 3000, waiting for Hannah to settle back into sleep.  Any moment now.  Any time.  Wait for it....

Janette reported that Hannah had been awake for about two hours (translation:  Mommy very tired).  Hannah, of course, lit up on seeing me, so she is now experiencing her 90th second wind of the night.

Later this afternoon, we're having Hannah's birthday party.  This is the birthday party we decided not to do last Saturday because we really wanted to avoid any conflict with a major holiday like St. Patrick's Day.  For our guests' convenience, we have instead apparently chosen to host the party between Good Friday and Easter Sunday.  Yes, we're Jewish.  Although we do have access to a standard, secular calendar, I'm kind of thinking we consulted our lunar calendar for picking this particular date.

Anyway, we still expect attendance to be pretty good.  We've hired out a room nearby and rented the Caterpillar for an hour's entertainment.  To us parents, the Caterpillar is one of those massive plastic blow-up climb-inside-and-get-lost disease delivery systems; to Hannah's friends, it is Legend.

So, despite the interesting choice of days, we're still hoping for a good turnout from a mix of Hannah's school and neighorhood friends, family, and maybe a few of Hannah's nurses if they can stop by.

The cake is ordered.  The ice cream will follow.  And the Caterpillar is waiting.

-- Dad

P.S.  Retyped from the AlphaSmart 3000.  Need to buy special USB cable.  Darn.  Good thing I had my credit card handy ;-).  Now I must wait for shipment.  Patience with new toy.  Patience...

Posted by Dad at 01:43 AM | Permalink | Comments (0) | TrackBacks (0)

I was folding laundry the other day and found a white shirt of Gabriel’s that he wears to school often. Well, it used to be white. Now it had random multicolor stains.

Whenever I see blotches and ink stains, I see pictures in them. I pulled out some markers I bought a few years ago that work on clothes and don’t bleed in the wash, and I turned his stained shirt into the robots’ playground. I liked the way it turned out. No one has been able to spot the original stains yet.

--Mom

Posted by parents at 10:32 PM | Permalink | Comments (1) | TrackBacks (0)

I walked away from the table to grab a drink, and by the time I returned, my spoon was gone.  Janette had made spaghetti, and I am a fork-and-spoon-roll style spaghetti eater.  Spaghetti without spoon would simply not do.

I didn't have to look far.  I had moved Hannah between Gabriel and me at the table a minute before.  Now she sat there in her spiffy new rental wheelchair, smiling at me.  She gripped my spoon in one hand, letting it dangle precariously from her mouth.

"Hannah," I chided, "that's my spoon."

She dropped it, then dove for Gabriel's plate.

"Hey!" he laughed.

I reached across the table, saving his noodles from an untimely death-drop to the floor.  Hannah snagged his carrot, admired it, and put it in her mouth.

I tried so hard to find my serious Daddy voice.  Here was Hannah, a humongous carrot dangling from her mouth like some slightly-confused snowman nose.  "Hannah, that was pretty grabby and not nice.  Let's get you your own plate."

She reached quickly for my (new) spoon.  I moved it out of her reach as Janette saved the day, bringing Hannah a small plate with noodles and not one, but two spoons.  Although Hannah eats primarily by g-tube, she was definitely signalling I WANT TO HAVE DINNER JUST LIKE YOU, and we quickly complied (often the best recourse when Hannah is involved).

For a moment, we ate in peace.  Hannah was attacked by the sticky noodles from her plate (which kind of seemed to gross her out:  some agreement with Daddy there).  She mouthed and shortly thereafter dropped both spoons.  Some misbehavior earned her a timeout somewhere along the way, but we ate dinner together as a family for the most part.

In the end, Hannah, the spaghetti and spoon thief, was excused from dinner, and I was left to play Marco Polo with the many spoons scattered beneath the table.

-- Dad

Posted by Dad at 08:19 PM | Permalink | Comments (1) | TrackBacks (0)

We have some goals we have been working on with Gabriel and Hannah. For Gabriel, they are living with his choices, reading and listening the first time. For Hannah, they are getting mobile (walking, crawling), talking, and no biting.

Gabriel has been wanting a new video game for the Wii. Those games are pretty pricey, so we instituted an earning chart. He can get up to 5 stars a day. The chart has space for 200 stars. So if you do the math, each star works out to 25 cents each. So they are not arbitrarily given. We haven’t had a 5-star day yet, but, as he is catching onto the reward system, I see that 5-start day coming closer.

Well, the other day as I was driving Hannah home from school. I stopped to pick up Robert from work. We are lucky he likes to have lunch with us. Robert and I were discussion some behavior of Gabriel’s where we mentioned the stars and quantifying them. Hannah chimed out clearly from the back seat.

"Star"

Robert, the nurse and I looked at each other. "Do you want a star Hannah?" One of us asked.

"Yes, star."

I shrugged "Ok, Hannah I’ll make you a star chart."

She laughed.

--Mom

Posted by parents at 09:44 PM | Permalink | Comments (0) | TrackBacks (0)

It's 3:00 a.m..  The phone is ringing, incessently.   The kids are peacefully asleep in their beds.  Mom anxiously works her way through their rooms, verifying they are safely tucked in, undisturbed.  The world is in crisis, waking someone in the White House who must respond –

Really?  Mom's making the rounds because Something In The World Is Happening (isn't it always)?

It's much simplier here at our house.  About an hour earlier, it's not the phone ringing that wakes me; it's the buzzing alarm.  Time to swap nursing shifts with Janette.  Soon after, Janette is yawning medicines given and when-kids-fell-asleep times into my waking brain.  As she heads to bed, I am verifying that g-tubes are not leaking formula into the bed, clearing the humidifier line of excess water, and making sure Hannah's trach is securely in place.  I'm walking across the hall to Gabriel's room, rewrapping him in the blankets he's managed to kick away, lulling him back to sleep.

Sure, in an hour, a hypothetical call might route from some distant country into the President's House.  He's got staff to handle that, though, doesn't he?  And the next President will do, too, regardless of who he or she is.

I would feel safer, in fact, if the President were picking up the phone, rather than waiting for it to ring.  Maybe he or she would call in advisers, leader of Congress, and develop and implement universal access to quality health care, a reassessment of military missions and expenditures in lives and money, a progressive and sustainable tax and welfare system.

I know.  I'm dreaming a bit myself right now, aren't I. 

But I imagine 3 a.m. Commerical Mom might agree with me.  She didn't get a 3 a.m. call:  not really.  She and Hubby had sat at the dinner table that night, after putting the kids to bed, discussing the Basics:  jobs, grocery and gasoline costs, house payments, a school report card, medical bills.  All of that had stirred around her subconscious, producing a big, heart-pounding nightmare.

She made the rounds to verify that The Big Bad Nightmare was just that.  The kids were safe.  The house was intact.  She and Hubby still had jobs.  No medical, debt, or other crisis had chewed up her loved ones.  Not yet, anyway.  She could tip-toe back down the hallway and crawl back into bed.  Tomorrow would be another day.

-- Dad 

Posted by Dad at 01:15 AM | Permalink | Comments (2) | TrackBacks (0)

The other day, Gabriel found a penny on the street in the parking lot. He was happy and thought it was pretty cool.

We got to the car. While I was unloading Hannah and her equipment, Gabriel was wandering inside the van. He tried to help with bag placement.

Well, in the middle of the tussle, he lost the penny in the car and started frantically searching for it. It was cold out and I was trying to get him seatbelted in.

I finally used the Stern Mommy Voice and got him to sit down. Meanwhile, he was going on and on about the penny. I reminded him that there are more important things as I was draping the seatbelt across him. In my mind, I was also thinking about the ride home and how my little drama king would go on and on about the penny. So I came up with a solution that would give me a peaceful ride home. All it would cost me was a penny.

When I’m the main caregiver with both children out and about, I don’t like to use a purse. It becomes another thing to worry about. So I wear Old Navy men’s cargo pants. I’ve nicknamed them Mommy Pants. They have nice sized pockets. I can carry my wallet, cellphone, keys and a small camera nicely sorted about my person. (I usually wear it with a pretty girly shirt)

So here is what I did. I pretended to look for his penny with my right hand while my left hand pulled my wallet out. Then I bent over like I found something and pulled the grubbiest penny I could find out of my wallet. Then I said, "Hmmm, I’ve found a penny." Meanwhile, I re-pocketed my wallet as Gabriel gushed at my cleverness. "That must be my penny!"

My father in-law, who was driving, smiled and exchanged winks with me. He also chuckled, "Gabriel, you have no idea how smart your Mommy is."

--Mom

Posted by parents at 07:19 PM | Permalink | Comments (0) | TrackBacks (0)

Since it was Hannah’s birthday we got a gift card for Build a Bear workshop. So, we went to the mall and went into the store. I try not to buy too many stuffed animals since three people in our house are asthmatic. Stuffed animals and dust mites are the very best of buddies.

The neat thing about Build a Bear is that they have all types of accessories for customizing ones stuffed animal. Hannah’s Elmo was bought there originally so all the outfits and shoes fit Elmo. We were just walking around in the store and we were about to leave since, Gabriel was having listening issues when I spotted a wheelchair for the stuffed animals.

I smiled and showed it to Robert. He looked at me and laughed "Well, you’ve got to buy it! You don’t know when you will find it again."

I mentioned on the way home that ," I wish it was as easy to buy a wheelchair for Hannah."

She outgrew her kid cart at least six months ago. It’s a long story. We are still waiting on her new one.

Since Elmo was getting the chair, I thought it was time to actually put a trach in Elmo. So I did that too. When I showed him to Hannah, she laughed and brought him in for a big hug. Then she bit his nose and eyes.

--Mom

P.S. I had to install a seatbelt for Elmo the chair didn't come with one. LOL

Posted by parents at 10:54 PM | Permalink | Comments (0) | TrackBacks (0)

Happy Birthday Hannah!

She is Four today.

Hip Hip Hip Hip Hooray!

Posted by parents at 10:34 PM | Permalink | Comments (2) | TrackBacks (0)

On one of her B & N trips, Janette managed to find two youngish adult books:  one about Barack Obama; one about Hillary.  A few nights ago, we gathered in Hannah's room.  I was pretty excited to read the Barack Obama book to the kids.  Janette seemed to be more on the fence; I think either book would have suited her.

The kids, though, sat (mostly) through the Barack Obama book, learning about his childhood, his college days, his political career.  Gabriel squirmed a bit, lost focus.  Hannah called out in a few parts and chewed thoughtfully on a nearby toy.

At the end, we cheered The Blue Team (as we call it in our house).  I asked Gabriel who he liked better:  the boy or the girl Next President.  He affirmed, "the boy President."  I held both books out for Hannah, near her face, asking her her favorite.  She quickly settled on, and continued to stare at, the Hillary Clinton book.

We are, truly, a house divided.

-- Dad

P.S.  I am so getting sucked into the Daily Kos website.  Came across this entry tonight regarding candidates stance on the Iraq War.  With apologies to Pop Pop, I love the Obama quotes! 

Posted by Dad at 10:24 PM | Permalink | Comments (3) | TrackBacks (0)

It's just one of those nights.  Although my candidate, John Edwards, dropped out of the race some time ago, I was kind of hoping tonight might decide things one way or the other for The Blue Team.  No such luck.

Then I went to check my primary email.  My account, for no apparent reason, isn't accessible.  Mails missed.  Service denied.

The night with the kids was so-so, too.  Mr. G was having difficulty listening the first time; Ms. H was pickier than usual regarding our nightly activities (singing and tv were okay, but no hugs or cuddles - sigh).

So... I'm moving away from the computer and either a) jumping into a good book or b) taking a non-political, non-thinking tv break tonight.

-- Dad 

Posted by Dad at 09:16 PM | Permalink | Comments (0) | TrackBacks (0)

Several weeks ago, we as a family took the Max to Downtown Portland and visited the Portland Historical Museum. They were having an exhibit of Abraham Lincoln’s papers. President Lincoln fascinates Gabriel.

The first thing he will tell you about Lincoln is that he was shot by John Wilkes Booth with a gun in the theater. The next thing he well tell you is that he thought slavery was a bad idea. Then he will say that he was a super hero before he was a President.

My mind fills with images of Lincoln, with the top hat, wearing a mask across his eyes and a long, bright red cape flying in the air. I can’t help but smirk.

So we have found a collection of kids’ books about Lincoln, and Gabriel has some interesting things he likes to play with. He has a fake, five-dollar bill with Lincoln’s picture on it. He likes to pretend that it is a badge and that he has been appointed as a spy to find slavery and stop it. He has a necklace he made at school with a penny glued to it. He likes to wear it and calls it his amulet. He seems to think it might have some magical abilities. He has not told me what they are yet. I just watch him mumble and show it to imaginary people.

So when we saw that this show was so close, we thought we should check it out. We wanted to encourage Gabriel’s interest, and I was curious what the gift shop would offer. Truthfully, I was looking for a Lincoln action figure. They didn’t have one, but they had copies of his writings in his handwriting. We purchased those and pencil toppers of Lincoln’s head.

So when I get spare time, I plan to turn one of the heads into a Lincoln action figure. Right now Gabriel talks to the head and uses it with his other figures.

--Mom

Posted by parents at 10:03 PM | Permalink | Comments (0) | TrackBacks (0)

I’ve just found out something new about myself. When either of my children hold their breath, I do too. It’s involuntary and just totally weird.

It sounds strange and irrational, but that is what I found out yesterday.

Let me give some background here:

Since Hannah has a tracheostomy tube to help her breath, she requires suctioning of that tube on a regular basis. To be graphic, a good ball of mucous can make it so she can’t breath through the tube. To suction, there is a machine that creates a vacuum and pulls air into a canister. Attached to the canister is a long tube about a centemeter in diameter. There are one time use attachments that are sterile that I hook into the tube and send down the tracheostomy tube. When I do this, besides removing all of the mucous and debris form her tube, it also takes all the air from Hannah during those moments. As a safety measure, I always hold my breath so I have an idea how uncomfortable it is. I can not take extra air because Hannah didn’t get a chance to. It is a great safety technique and I always keep in mind that Hannah lungs and capacity is even less then mine.

So anyway I’ve been doing this for about three years. Yesterday, Gabriel was trying to make me laugh. He gets these random ideas that certain things will be funny. So he holds his breath and hums with puffed out cheeks. Though I’m sitting there not copying him, I found myself holding my breath. He keeps doing it. Within about 5 minutes, I’ve developed a headache. I, at first, can’t believe it. I can just not hold my breath, right? I try to just breath; it doesn’t work.  Every time he holds his breath ,so do I.  It has become an involuntary response in me. So I place a book in front of my face to block watching him. He takes that as a challenge and dodges the book.

I start to get dizzy and a little queasy. I’m dealing with a child in super silly mode, and I’m stuck in some weird conditioning I’ve done to myself. I sit there trying to find a way out of the situation. I really try to not be unrational with weird demands, but my head had begun to throb. I look down at Hannah playing with her toys. I think to myself:  do I want to break my self-imposed conditioning?

Internally I answer nope: I want that safety net.  I want to be totally aware of what I’m doing with my child when suctioning. It is not a time to break this habit. So I coax Gabriel to sit next to me and try to explain things. I told him there was nothing wrong with him holding his breath, and then I tried to explain what was happening to me.

He interpreted that as he needed to cover his mouth. It still didn’t work, so I think I finally decided on distraction with a favorite TV show.

Parenthood can be so bizarre sometimes.

--Mom

Posted by parents at 12:15 AM | Permalink | Comments (0) | TrackBacks (0)