Kintropy In Action

Gabriel is sitting beside me in Mommy's chair as I write tonight's blog.  He is enjoying a late Goldfish snack.

Gabriel says, "Write that Mommy is going to sleep in her room."  So I do.

Now his Goldfish are talking to both of us, "Hi, I'm a little fishy.  Now there's someone who wants to eat me.  Ahhhhh!"  Gabriel chews up the cracker and walks back to the desk, far from the computers, where our cups of water rest.  He takes a drink and returns to Mommy's computer chair.

Gabriel is looking at pictures on the computer while he eats.  Mom has left up some icons she is working on to help expand visuals on our main site and build out our Recommends features.

"Hey, Daddy, look!  A book is on there."  Gabriel points to the screen.  "And I see something else.  It's called an art-cutter thing.  I see words, Daddy."

"What do you think the words say?" I ask. 

We practice our letters, but Gabriel is busy making up a story.  "This says we cut up our scrapbook and make pictures," he says.

"How's your snack coming."

 "Good.  Wee, fishy.  I'm... uh... Daddy, I cracked my fishy cracker.  Hey, Dad, would you like to have another fishy cracker?"

I grab one from his fingers with my mouth.

He laughs.  "Hey, you're supposed to use your hands.  Here I'll give you another one."

And the game continues.

Gabriel is up way past his bedtime.  Today was Gabriel's first weekday home with Janette and Hannah.  All three of them are sick - colds plus whatever Hannah has.  Although Gabriel didn't take a nap today, he woke at 10am (3 plus hours later than usual), pushing his bedtime off a bit.  Janette has retreated to bed to nurse her own cold, and Hannah is asleep doing the same.  Gabriel and I are getting some time in the office.  Soon, I'll herd him to bed, but for now, we're just playing. 

-- Dad 

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Bookmark the Northwest Down Syndrome Association (NWSDA) website now before you forget.  I'll wait.  Done?  Good because

each year, NWSDA, along with a multitude of sponsors and volunteers, holds the annual All Born "In" Inclusion Conference.  I attended it yesterday (the purpose of my trip to Portland per yesterday's blog), and I walked away both more motivated and introspective.  Excellent keynote speakers Dr. Jeff Strully, Kathie Snow, and Dr. Paula Stanovich provided the big picture and perspective.  Individual sessions helped us focus on specific topics of interest in our families' lives.  See my links at the end of the blog for some resources I have found particularly useful and inspiring.

The Conference also left me introspective about my own family's chaotic life.  At moments, listening to a speaker, I'd pat myself on the back:  yeah, we're doing that!  We got it!  Janette and I practice what we preach regarding inclusion at home well.  Then another topic would come up, and I would realize, yeah, well, there we could improve.  Hmmm... that's a different way to look at that.  Etc..

Today was a good example of a poor inclusion day, actually.  Hannah has been sick since Thursday.  I talked with her nurse this morning, seeing if she and Hannah felt up to going with us to lunch, Toys R Us, and the mall.  We both agreed Hannah wasn't quite there yet, so Janette, Gabriel, and I headed out with my brother and his son to a rambling, four-and-a-half hour shopping venture.  We had a great time, but Hannah didn't get to share it with us.

When we returned home, we all bounced between rooms and activities:  sometimes together; often, not.  Hannah wanted my undivided attention, but she got it only in fragments.  I went to our bedroom to relax.  I joined her outside and sang to her.  I went back inside to catch up on the news.  Hannah got frustrated that I wouldn't pick her up at times.  We negotiated some of that, but in the end, I needed some down time, and she got less of my time than she wanted.

As I write now, she is recovering from her bath (always a little traumatic - she doesn't like them) in her bedroom next door and fighting the sleepies brought on by a lack of a nap this afternoon.  We both are getting our down time, and that's not necessarily a bad thing.  We ate together at the table tonight, but all of our routines seem short & unsatisfying to both Hannah (I suspect) and me.

And we go on.  Tomorrow may be a better day:  one of those "wow, that was a great family night" kind of moments where we can just feel everything "click" in those two-to-three post-work hours we share together at night.  And having some space, some down time, is okay and necessary, too, but today just feels a little incomplete & unexperienced.

*** 

Now for two, quick inclusion-related links (and I'll recharge a bit with them myself, thank you very much ):

Kathie Snow's website is a must-visit.  If you get an opportunity to hear her speak, I highly recommend her.  Yesterday's conference was my second time listening to her speak, and it still "wowed" me.  You will also want to browse and read her articles while visiting the site.

Richard Villa's book Creating An Inclusive School is amazing.  I'm on my second copy because I gave my first one away to a family member who runs a preschool in Denver, CO.  The chapters involving inclusion in education theory and practice are well-written, but take some time to read and digest.  The real inspiration, to me, are the case studies:  inclusion-in-practice stories that just take your breath away.  Buy this book both for inspiration from the case studies and implementation ideas in general.  If you get a chance to see Dr. Villa speak, I will encourage you there as well!

Have more inclusion resources and ideas?  Post a comment and let us know!  We are just at the beginning of our journey (though I'll write more about it as we go along), so I'll appreciate the tips along the way.

-- Dad 

Posted by Dad at 06:38 PM | Permalink | Comments (0) | TrackBacks (0)

I am a city person; Janette, a suburban person.  Pre-kids, in my retail management wanderings, we experimented with both. 

West Hollywood:

Me:  Great place!  Everything on tap:  concerts, great delis, noise, huge vinyl record stores, quirky boutiques, the Sunset Strip, hey, is that Joe Pesci?, movie premieres.  What more could you want?

Janette (my interpretation):  Near to Robert's work, but not really big on the shady organization running our apartment, the cockroach that took 3 hits of Robert's shoe to kill, the tagging in the elevator, the all-night ladies hanging out at Kinko's while I'm finishing up an art project, and that whole lack-of-safety-feeling thing.

Long Beach

Me:  Eh, not a city.  Kind of close to Los Angeles, but still takes an hour and half with traffic to get there.  Park Pantry and The Library (cafe) are cool, though.

Janette:  Nice neighborhood (as long as you don't stray two blocks over).  Can walk around a bit.  Close to shopping, Barnes and Noble, and CSU Long Beach.

Post-kids, we've agreed to a compromise:  live in the suburbs, but locate within a half hour or less of a major city.  We have access to all the museums & big ticket attractions we want to visit, and we get to come home to the relative quiet and convenience of the suburbs afterward. Day-to-day, this compromise works well, but I am still a city person at heart.  Every so often, I need to indulge my inner City Geek.

Today was that day.  I boarded the Max train at 6:20am to head into Portland for a wonderful All-In Inclusion conference (more on that in the next blog).  Coffee mug (always) in hand, wearing a light coat, I bounced down to the Max station.  The birds were singing.  One of the two ticket machines was actually working.  The train arrived within five minutes of me reaching the station.  It was a beautiful start to a beautiful day.

On the ride in, I lounged in my newspaper.  The train car was half empty, so I could expand the paper fully.  I flipped it down, folded it, half-page, to focus on a feature.  I glanced at the Business headlines.  Tripple camel flip:  the Business section popped effortlessly behind the Living section.  The comics invitied me in.  It was good.

The train arrived downtown, and I departed at 10th/Library and walked up the block a bit.  Nordstrom was closed as were most of the shops, but the Saturday bustle had begun.  People were starting to move about.  A bistro had construction workers replacing a sink.  A tall man with a long pole was poking at letters on the ground to change a theater marque.  The city was breathing, keeping time with my steps as I turned the corner and walked slowly uphill toward Portland State.

On campus, the Saturday Farmers' Market was stirring.  People popped open their tents and emptied the backs of their pickups and vans.  Vendors chatted with each other as they loaded their tables, checked their scales, and sipped their coffees.

-- Dad 

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If you've been reading this blog you will know that next week I'm going to start having both kids home everyday for the summer. Yesterday we had a trial run. Gabriel had been invited to a birthday party at noon and Robert's busy preparing for a conference this weekend. Coming home for lunch which he normally does, was not possible. So we made the decision to keep Gabriel home all day.

First things first I need to stop napping in the mornings. I've been doing this for over three years so it is a hard habit to break. I think I slept ten minutes. I'm trying to start thinking of the day in 30 to 60 minute increments. I need time in the morning just to get my bearings. So I decided that we watch two shows. I started It's a Big Big World and then Sesame Street follows. They are both educational they relieve my guilt for using the electrical babysitter.

Gabriel looks up from his Nintendo and begins his struggle for control over the situation. "I want to watch Ninja Turtles !"

"Not right now Gabriel, remember you don't get to do everything you want just because your home. It's not the weekend we need to work too. Ninja Turtles is not educational. We are going to watch Big Big World and Sesame Street. You have been playing your Nintendo for an hour you need to turn it off for now."

He offers his arguments to watch his show and keep playing his video game.

I finally shut him down with the stern mommy voice.

"OK" he sighs. Goes and looks at his toys then sits down to watch the show he didn't want to see. Hannah's a pro at this she watches works on rolling from toy to toy and plays at the same time. It's Tuesday so I start the laundry and empty the dishwasher. Reload the dishes. Hand wash the pots and pans that don't go in. Grab some breakfast and a cup of tea. And start to wrap my head around the idea of what I want to do that day.

I usually put Hannah in her pacer at 2:00 but we will be at the party so I decide we will do it after the shows. So I tell Gabriel its exercise time after the shows. He doesn't want to participate at first but concedes after I get Hannah set up in the bedroom next to the Elliptical trainer I have in there. I give him a palettes ball. He suggest watching the news. I can't exercise to that. So I bring in the Laurie Berkner CD. After we start it takes him some time to realize I'm not getting off the machine till my workout is done. After constant reminders to stay away from the spokes he of course learns the hard way and gets hurt and moves to my bed to do some equally dangerous acrobats.

I tell him I'm almost done and I'm going to take a quick shower because I'm dripping in sweat. He wants to play a Yu-Gi-Uh card game. He hits me in my weakest spot, I love card and board games. I'm always trying to get him to play one with me. So I agree to wait on the shower. He is only five and the game is slightly complicated and being able to read well would be helpful. After we mess around with the cards for ten minutes I am extremely uncomfortable and itchy. "I'm going to take a quick shower." He tries to whine even though that never works. I jump into the shower and it is less than a minute. It's a quick lathering of the hair and soaping down and rinse. One of the super skills I've learned since having kids, I'm not sure if I proud of it but like I say it's quick and I'm clean.

Hannah demands to be taken out of her stander once I'm out of the bathroom. I move her to the bed while I try again to play an abbreviated game which mostly consists of Gabriel quoting the cartoon that promotes the game. After about two more minutes of this Hannah has reached her limit. She wants attention and she wants it now. So I use her as an excuse to stop the charade of the game since Gabriel has stopped giving me turns anyways and move everyone to the family room.

"Can I watch Teenage Ninja Turtles now?"

"Yes."

"Can I play my video game too."

He really getting good at trying to negotiate. "No"

"Aw shucks"

"Hey we don't have to watch Ninja Turtles"

He stops.

"Just remember in an hour we are going to the party."

I try to play with Hannah she pushes me away and decides she wants a nap instead.

I take the time to move laundry around and put some away. Then I collect everything to take Hannah out. Plus I'll need to hand feed her while we are gone. She luckily wakes ten minutes before we need to go. If woken Hannah's always grumpy is she wakes herself she is normally happy. Gabriel carries the present while I Sherpa the medical equipment two houses down to the party.

We all had a great time with Gabriel only getting hurt once and Hannah having a medical moment only once. Yeah!

I have simple goals.

The rest of the day pretty much went along like that. Constant negotiation but I did pretty well Gabriel only watched about three hours of television and played 2 hours of video games.

 --Mom

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Last Monday was an exciting day in our household our youngest, Hannah started preschool!

It is through the school system here called early intervention. It is designed to help those students who might have trouble adjusting to school structure, ease into the process. Hannah is starting with one day for one and a half hours.

She was suppose to start on the first Monday of this month. That wasn't possible since the busing hadn't been set up yet. We were in transition between nursing companies so I hadn't gotten a nurse signed on for day shifts on Mondays yet. Transporting Hannah with only one adult in a vehicle is not really safe. There needs to be a driver and a caregiver. The driver concentrates on driving and other vehicles. The caregiver takes care of decanulations(her pulling out her Trach tube), suctioning (removing mucous from the airway) and monitoring oxygen saturation levels (putting her on or upping her oxygen if she is looking blue). So the point is the first Monday of the month wasn't an option.

The next Monday, the bus was set up, but she had a fever.

So last Monday we focused. Her night nurse started her morning feed early. I woke up and showered and actually dressed into street clothes instead of staying in my p-jays. The night nurse and I woke up Hannah instead of letting her sleep. Hannah did not appreciate that and let us both know it was too early. So we began the process of getting her ready to get out. The nurse checked her travel suction machine to make sure it was working. (She'd already cleaned it while Hannah was sleeping)Meanwhile I changed Hannah's diaper and clothes. While the nurse was cleaning Hannah's stomas (the skin area around her trach and g-tube), I was checking Hannah's diaper/medical supply bag for diapers, suction catheters, clean wash clothes, extra clean feeding tubes and clean feeding syringes.

All the needs-to-have checked out, so I looked Hannah over. I hadn't gotten around to giving her a bath the day before so Hannah's curly hair looked like it "had a party last night". Her breath - well, it wasn't so fresh. So I got out the toothbrush and worked on her mouth till she took the toothbrush from me and chewed on the end with no bristles. ( I could really use a tooth brush that had bristles at each end) While she chewed on the toothbrush, I got a bowl of water and her comb and brush. This is never a pretty sight. My daughter hates with a capital H anyone messing with her hair. She yells, complains and swings her head back and forth.

In the middle of this, the school calls.

"Are you planning on having Hannah go to school today."

Brightly I reply in my polite, tinny, smiley voice "Yes, we are going!"

"Great, she is welcome to come. We just wanted to let you know her usual teacher and aide will be absent. They are both really sick, so when you come today you won't actually get an idea of what class is like. Do you still want to come."

The floor starts looking good - like a great place to nap. I'm still adjusting to having night nurses, so I'm still not really getting to sleep before midnight. I wake up usually at six thirty every morning to relieve the night nurse. So I've got into a habit with Hannah of sleeping on the floor with her in the mornings. So when I say the floor looks tempting, I'm not kidding. I remembered my resolve, I'd had already come so far that morning, I was dressed; Hannah was dressed. "No nap Janette," my interior coach said.

"We are coming!"

"Great, we will tell the bus driver."

"Thank you for the call." I managed before I hung up the phone.

So at 8:20 am, in the threatening-to-rain morning, Hannah and I were at the curb waiting for the bus. I was originally told to be ready by 8:30, and I was raised by a Marine. Before I had kids. I would of been out there by 8:00 am, but since the children, I tend to only be ten minutes early instead of thirty minutes early. Hannah's mood greatly improved once she was outside. Since her health was so fragile the first two years of her life, she barely left her room, let alone the house. So every outing is a treat for her. Since she has gotten more stable, we take her out as much as possible. But I digress.

8:30 came, but no bus arrived. We started pacing between two of our neighbors and our house.

8:40 came, but no bus arrived. I start pacing just in front of our house and wondering if this was going to really happen.

8:45 came, but no bus arrived. I accepted it might not happen and think it still could arrive and that they just give people an earlier time to make sure they are already ready by the time.

The bus turned the corner at 8:50. It was yellow huge and long. It sounded like a big tin can moving through the air with a grinding big motor noise and it stopped in front of our house. Hannah eyes opened wide.

--Mom

Link of group who wrote the song "My hair had a party last night" Trout Fishing in America

Posted by parents at 09:21 PM | Permalink | Comments (0) | TrackBacks (0)

"He said, 'stupid', and I told him that was a bad word, and he laughed at me."  Gabriel shared this story as he got ready to brush his teeth tonight.  Janette reaffirmed Gabriel had done the right thing.  "It may not make you popular, but you did the right thing."

Gabriel learned that "stupid" is a bad word at his preschool and that name calling, in general, was unacceptable.  If he learned nothing else there, this lesson was worth the price of admission.  What better way to teach Gabriel that words mean something and mean words demean people than banning the word "stupid."

In our house, we work hard to respect each other (even when teasing).  It's a lot of work:  we don't always succeed, but we correct each other as needed.  We also employ People First Language.

I learned about People First Language while attending Partners In Policymaking - a nine-month, life-changing experience in making a difference in our community.  There, sitting beside parents and self-advocates, I heard most speakers clearly distinguish the person from the adjective.  "Disabled people" became people with disabilities.  Families, like mine, with "special needs kids" became families that experienced disabilities and our kids became, well, kids:  unattached to their diagnosis, except when absolutely necessary (e.g. for those lovely IFSP and IEP forms), and reconnected to their childhood.

Why is this important?  Is this just another politically-correct-movement-of-the-month, forcing us to recraft our language for the benefit of the few easily-offended?

To me, no.  To me, this subject comes up almost daily.  I was at a cafe a few months ago with my family.  Janette and the kids had strolled off to find a table, and I was finishing up our order.

"What's wrong with her?"  I turned to face a woman in her early thirties.  She had held the door open for us when we entered.

"Nothing," I replied.

"Well, when I saw her get out of your van, I thought, 'Oh, poor thing, she can't even walk.'  But then I saw her wiggle her little feet, and I thought, 'Thank G-d!  She can walk!"

"Yes, she can." I tried hard not to laugh, wondering if Ricky Gervais was going to pop out of the woodwork.  "We're all working on that.  Right now, she's using the wheelchair for support." 

"Well, I was so happy to see that she wasn't paralyzed."

Detaching politely from the conversation, I walked to our table.  Retorts and new dialogue, Better Things I Could Have Said To Defend Hannah's Honor!, poured through me.  On reaching our table, though, most of that faded away.  Janette and I had work to do.  Hannah, unhappy with the lack of movement and singing, was crying.  Gabriel was oblivious to the world behind his Nintendo DS, even abstaining from the dessert in front of him.  We ate.  We talked.  We sang to Hannah.  We directed Gabriel to set aside his Nintendo DS and participate in family time.

I relayed the encounter to Janette later, outside of the kids' earshot.  It was amazing to us both how other people viewed Hannah, and our family, and how willing this woman was to share it.  I was glad to have challenged her idea that something was wrong with Hannah herself, but I wished I had pushed the conversation further, taught her something, proven something....

But Gabriel's story today reminded me that some people don't get it, unfortunately.  I was happy, though, that Gabriel gets it.  That he will stand on principle, even if people laugh or don't get it.  That he'll stick up for what he believes in.  That he won't use the word "stupid."

-- Dad 

Posted by Dad at 07:28 PM | Permalink | Comments (0) | TrackBacks (0)

With the weekend winding down (and no blog entries in the last week), it seems fair to restart by catching you up.  Last episode...

• Gabriel was counting down the days to leaving preschool.  Fanciful images of unlimited Nintendo DS time danced in his head.
• Hannah was beginning her first infection free week since early winter, enjoying untethered time from the ventilator and joining us regularly at most meals
• Janette was working again on the perpetual playstructure project, but making considerable headway
• I was heading into my busy time at work and squeazing what fun and family time I could out of weekend hours

Highlights from this week:

• With a little assistance from her nurse, Hannah pulled up to a standing position at Gabriel's train table and maintained it without one of us supporting her.  She held it for a few seconds before gentling letting herself down to the floor.  Important milestone and good to see.
• Gabriel said, "Let's go bike-a-ling!"  We tried out his 18" bike, purchased last week, but it didn't seem to be a particularly good fit.  We visited our local Bike & Hike shop here in Hillsboro; they set us straight with a beautiful 16" red bicycle.  Later, we went bike-a-ling with neighborhood friends, and Gabriel didn't fall once with his new bicycle (with the much sturdier training wheels, too).  A good day out w/ lots of exercise.
• Janette spent quality time with her new game, Fairy Godmother Tycoon.  She did lots of other stuff, too, particularly getting us all caught up on household chores, but I think Fairy Godmother Tycoon was probably the highlight.
• I started bringing more work home.  Some waiting for me right now.  As I type.  Waiting.  Tonight will be okay.  Yeah, I'll have time tonight.

Currently, Hannah is taking her first extended nap of the day.  I strolled around with her outside while Gabriel rode his a-little-too-high 18" bike this morning, so I am glad we got her out and about.  Staying inside the house as much as she sometimes does would drive me nuts, so both Janette and I take every opportunity to get her and Gabriel out as much as possible. 

Gabriel is sitting with Mom while she plays Fairy Godmother Tycoon.  He is trying to negotiate some more tv time, but she is resisting valiantly.  "C'mon, you can watch a 'full hour of Yu-Gi-Oh' with me."  Yes, he's repeating the commercials to us.  Maybe a short break would do him some good.

That's all for now.

-- Dad 

Posted by Dad at 04:11 PM | Permalink | Comments (0) | TrackBacks (0)

We are having too much fun exploring our game site at Big Fish Games.  Gabriel sits in my lap or next to me, cheering me on in Lego Bricktopia:  a great brick-busting game like Breakout, DX Ball, and others.  He pleads to play the Baby Game (Carrie the Caregiver), and Janette stays up much too late playing Grimm's Hatchery.

Hannah is less interested.  She hangs out in the office with us, playing with her Bee and talking with us, but she quickly gets bored watching us play games.  Still looking for an inclusive angle - maybe a modified, good gross-motor joystick?  She enjoys watching the video sometimes, but we need to find a way to help her play, too.

-- Dad 

Posted by Dad at 06:31 PM | Permalink | Comments (0) | TrackBacks (0)

Wince, my lower back has a sensation like a knife is sawing through it. I know why. I finished sanding the wood post for the play structure I been working on since last year. Sanding you say whatever for? Well it isn't a premade set. I got the directions from the website http://www.byoswingset.com it was actually a kit that came with page by page instruction and bolts for assembly. Why, did I go this route when there are perfectly good play structure companies out there. Good, question I ask myself that every time I look at the pile of wood on my back patio everyday. Truthfully though when I turn on the power tools and work on it, I love it. It is one of the few occupations I do where I completely clear my mind. I can't think about anything else while handling a machine that can dismember or permanently injure me. So I end up in that Zen state of the uncarved block in my mind.

I went this route for two reasons, one the equivalent play structure would be around 5,000 if course I think I'm at the 3,000 mark by now but its been over a year instead of all at once. The second reason was , besides wanting something special for the kids to play with I wanted something I can look at a go wow I did that. So I'm enduring a little muscle soreness. When its all done and I will be able to say "Go play outside!" The time and energy will be totally worth it.

If your curious the model I'm working on is http://www.byoswingset.com/plutoexpress.html

Posted by parents at 10:24 AM | Permalink | Comments (0) | TrackBacks (0)

On Friday, the weekend seemed full of promise:  an endless field in an old Western.  A particularly long workweek had ended (late, I might add).  I came home to friends and family, pizza, two games of Halo multiplayer split screen, and a trip to a newly-opened cafe two blocks away:  Insomniac Coffee (which made an excellent first impression with a smooth, tripple-shot carmel latte).  On top of it all, we had completed our move to a new nursing agency, and Hannah had a night nurse scheduled that night.

We said good-bye to our friends a little before nine and helped Gabriel and Hannah to bed (definition: into their beds, not necessarily to sleep).  I received permission from Janette to retire to the Big TV, and I caught up on The Tudors and Real Time with Bill Maher.  It was a late night.  I was exhausted and happy.  As long as I stayed up, Friday night could not end.  If I had Clockwork Orange toothpicks for my eyes, I might have tried them, but I gave up the ghost around 1:30am.

Saturday was still a day where I could ignore the encroaching Monday.  On Saturday, everyone woke before 9am.  In fact, I was the last to wake:  a very different position from the last five-plus weeks of 2 or 4am nursing shifts.  I suggested we make a coffee run as a family, supporting our new cafe and my primary habit.  So we loaded up Hannah's suction machine, backback of supplies, manual ventilation bag, and her Kid Cart wheelchair, took a deep breath, then piled into the van and drove to the cafe (NOTE:  would prefer to walk, but our area of town is missing pedestrian sidewalks in significant places along the route.  Not very wheelchair or young kid friendly).

After coffee (and the purchase of the all-important lottery tickets at the nearby convenience store), we went home to await the day nurse scheduled.  Janette and Hannah napped.  Later, after the nurse arrived and everyone woke refreshed, we began our Weekend Orgy of Spending!!!  Toys R Us!  Dinner Out!  Trader Joes!  Barnes and Noble!  We bounced between them and home and out again for most of the afternoon and evening, spending my recently acquired paycheck capriciously (the ONLY way to spend it enjoyably - paying bills doesn't deliver the same satisfaction). 

By 9pm, still recovering from the late Friday night, I was ready to drop.  I offered to pick up Hannah's morning nursing shift, and I went to bed.

Sunday.  Day of Dread.  Day-Before-Monday.  I write now on the day that Pretends-To-Be-A-Weekend-Day, but is actually Pre-Monday.  I lie next to Hannah on my stomach, typing away as she watches the new Backyardigans DVD we purchased at Toys R Us (along with Gabriel's first two-wheel bike).  She is alternately playing with the Bee, rolling over on her tummy to see what I'm typing, and watching the tv.  The new workweek, sure to be fuller than the last two, is crouched in front of me, waiting to pounce. 

Sure, we'll do family stuff today, stall the workweek as much as we can.  But I know it is there waiting.  I'll stay awake tonight, catch the Sopranos, play video games, do anything to forstall its arrival.  But Monday will pounce anyway, sometime after I reluctantly give in to sleep.  The weekend will ebb, my wallet will breathe a sigh of relief, and we'll all go back to work.

-- Dad

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"Is tomorrow my last school day?" Gabriel asks.

"No - not 'til the end of the month, Buddy."  I reply.

Gabriel is literally counting down the days until he leaves preschool/day care for an extended break.  Although I know he'll miss his friends, he seems to be looking forward to it.

Several factors drove our decision to bring Gabriel home for the next few months prior to kindergarten, including:

• Gabriel and Hannah could use more time together.
• Gabriel is at the magical age where he can help out.  He is particularly good at helping us care for and entertain his sister - let the indentured servitude start!
• Gabriel needs Mommy time.  Not getting enough Mommy time.
• Gabriel has a long, thirteen years of compulsory education to look forward to - seems fair to allow him to pause as he walks the steps to the gallows!
• Dwindling funds in Gabriel's school account.  Although replenishable, all of the above convinced us that some time at home would be both fair and productive for everyone.

Preschool wasn't our first choice anyway.  We originally considered homeschooling.  But when Hannah came home from NICU, we needed help.  Her medical needs were significant, and Gabriel was getting very little of our time.  To fill the gap, we used a nanny service for the first few months (with my parent's considerable financial help).  This gave us time to focus on Hannah, but gave Gabriel some focused attention and playtime.

As our realization grew that Hannah's medical needs would be intensive and long term, we moved Gabriel to preschool/day care (again, with my parent's help).  We swore he would never go to day care, but circumstances dictated differently.  We ended up finding a great place near my work, and, after some sad, teary-eyed drop-offs, we all transitioned to this new reality.

Now things have changed.  Hannah's health has improved considerably.  She requires less intensive medical intervention when she is feeling well, and she craves playtime with and (at her sole discretion) without her brother.  Gabriel has grown, and he is more self-directed in using his time well.  Looking at both kids wants/needs and our desire to run our house inclusively, Janette and I made the decision to bring Gabriel home for awhile.

At home, we'll continue to work with Gabriel on pre-reading, problem solving (no, not just via the Nintendo DS), and other skills.  He'll have time with his sister and Mom plus the neighborhood kids.  Hannah will still have her play and exercise time and probably more time with playmates.  And they both will get tons of Mommy time.

You know what that means, of course.  When I get home at 6:00 pm, I need to be ready to take over as Mom dashes for the car, speeds off the driveway, and disappears into the night, screaming, "I'm free!  I'm fffrrreeeeeeee!"

-- Dad

Posted by Dad at 02:38 AM | Permalink | Comments (0) | TrackBacks (0)

Apparently, I went shopping at Fred Meyer tonight while thirsty.  2 bottles of V-8, 3 of Powerade, a 12-pack of Coca-Cola, a gallon of milk, a carton of grapefruit juice, and a pound-bag of Longbottom Coffee all came home with me.

My grocery trips are always a bit haphazard:  never planned or thought out.  Lists are optional (though I usually check with Janette on any have-to-haves).  If Starbucks is open, I start there, of course.  Then I wander over to the lottery machine to verify my current tickets (damn!  still didn't win).  From there, I start wandering the aisles.  My discoveries tonight:

• Disney's Old Yeller big-ass-bag of dry dog food was featured on an endcap.  Old Yeller; dog food.  Okay, is it just me, or is that creepy?  Particularly given the current scare over pet food safety, do you really want to link your pet food to a dead dog?  Rabies, wasn't it?
• The Fred Meyer I visited had RGIS tags everywhere.  They start inventory tomorrow night.  Having worked retail for many years, I remember those all-nighters well.  At my first RGIS inventory with Wherehouse, the store manager drank so much Jolt cola that my co-workers were racing him through the aisles in a shopping cart by 3am.
• Starbucks was closed, and I didn't have enough energy to get to our 24-hour Starbucks nearby.

Also they moved the Star Wars toys (Gabriel may be disappointed), and I couldn't find any good, singing, kinetic toys for Hannah.  The best ones we have found so far are:

• Playskool Bumbling Bee [need to post a picture!] - Hannah's favorite.  It has a kinetic switch in it that activates lights and singing when it is rolled.  Hannah makes a "bee"-line to it when she wakes up each morning.  It teaches phonetics on one setting; sings a song on the other.  Particularly fun when the batteries are running low: kind of a playing-a-record backwards voice:  "I'm... the... buuumbling... bee.  Sing... a... soooong... with... meeeee...."  Also like an original Teddy Ruxpin doll with a cassette tape of Yazoo's "Winter Kills."  Quite scary; try it if you can.
• Playskool Twinkling Star Symphony.  Five different colored plastic bears sit in their cradles and will start playing a song if buttons are pushed or bears are knocked down.  Hannah enjoys it, signing to it to keep singing to her.  She can also control it herself because it doesn't require high fine motor, and we all know Hannah LOVES C-O-N-T-R-O-L (what three-year-old doesn't)!

So the kids got nothing tonight.  And we got liquid, lots of liquid.  And I got a moment or two to myself (thanks Janette!).

-- Dad

Posted by Dad at 10:01 PM | Permalink | Comments (0) | TrackBacks (0)

Hannah’s on the way to getting sick today she had a fever this morning at 7:00 it was 99.3 Fahrenheit behind her trach-ties. Her normal temp is usually 97.6 Fahrenheit. So it was a day full of sleeping and cuddling.

Gabriel, Hannah and I ended up watching the movie Chicken Run. Which poses a question my mind has problems imagining (this is rare) chickens in the wild. What would that look like? Really? I have no idea where a chicken would naturally live or roost. They do seem viscous enough for the wild but their physiology baffles me. Ok, they are good runners. HMMMM I still can’t see it. Maybe I should Ask Jeeves(hmm the site has changed names) about it.

Chickens in the wild there is a bizarre NR DVD to film involving eggs for worms and or feed. LOL

Anybody know anything about this?

Hmmm www.ask.com had an answer….(http://www.centralpets.com/animals/birds/wild_birds/wbd4315.html)

-- Mom

Posted by parents at 09:48 PM | Permalink | Comments (0) | TrackBacks (0)

You can walk by Gabriel's room at night and hear him talking with himself. 

"Oh really, Gabriel?"

"Yeah, that's what I said."

"Ok, cool.  That sounds fun."

Sometimes, a Jedi or Teenage Mutant Ninja Turtle joins the conversation, but often it's a replay of playground conversations and classroom intrigue.  Janette wondered if we should help him internalize his dialogue.  I said, "No, his peers will do that soon enough.  Let him enjoy it."

Still it's both cool and amusing that he externalizes his internal thoughts and conversation.  Unfortunately, his peers will teach him it's un-cool.  Then he'll internalize completely like us adults.  No more externalizing dialogue.  Nope.  That's what I said.  Oh, really?  That's sad.

-- Dad

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"Okay," Gabriel says, "the carpet is lava, and this is the Island."  Propped upon a pile of couch pillows, he smiles encouragingly.  "Do you want to play with me?"

"After I'm done with breakfast," I promise, dividing my attention unsuccessfully among the Sunday Oregonian, a BBC Americas Tops of the Pops special, an eggs and matzah breakfast, and Gabriel's imaginative play.

"Ok.  Are you done now?"

"Not yet.  I'd like to read my paper, too."

"Ok, but you'll come play with me when you're done with your breakfast?"

My Sunday routine is very set.  As soon as possible, I brew The Coffee, grab The Paper, and, ideally, have uninterrupted time to read leisurely through the front page, metro, business, entertainment, and comics (in that order).  Interrupt at your own risk.

But Daddy-guilt has surfaced.  Since four this morning, I have been taking care of Hannah in her room, splitting the shift with Janette.  I slept briefly, helped Hannah through her morning medications, read to her, completed a project for work, and helped Hannah slip into her morning nap.  Gabriel popped into Hannah's room often, usually to see if it was okay to play his Nintendo DS.  He and I hadn't spent much time together this morning (or this weekend, for that matter).

I do want my newspaper time, but Daddy-guilt has won.  I set aside my breakfast and row the boat out to Lava Island.

"We have two toys on our Island," Gabriel says, laying out the rules and pointing to a small rubber shark and his Star Tours toy, "and you have to use the boat to get to the Island."

We pretend to read the only book on the Island (TMNT) and go to sleep.  I roll off the couch in my feinted sleep, waking up screaming from the lava burns.  I struggle back to shore to my son's dimpled face and belly-laughter.

So we sleep again, roll off, get burned:  wet, shampoo, rinse, repeat.  It's funny every time.  Variations are added:  "What's that smell?  Is something burning?  Argh!  My arm!  My arm!" which Gabriel dutifully repeats to his own laughter (note to self:  parents-teacher conference #873 originated HERE).

Gabriel counts off my lives, telling me it is okay that I fell into the lava because "you still have five lives left, Daddy."  Apparently, the Lava Island lives in Nintendo DS land.  Pretty soon, Gabriel is rolling off the couch, scream-laughing as he climbs back to shore.  By the end of our play, Speckles, Gabriel's pink elephant, has suffered a similar fate.  Although Gabriel assures me I still have lives, I extinguish myself in the lava and return to the dining room table.

Gabriel runs off to ask Mom and Hannah to join him on Lava Island, booking additional passengers for his adventure.  As I refocus on the newspaper's front page and munch on some matzah, I hear the squeal of distant seagulls and the gurgle-splash of oars beating against lava.

-- Dad

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Trill! Trill! Trill! I’ve just settled Hannah down to go to sleep and her Fisher Paykel (humidity machine for ventilator) starts to sing at me. Hannah takes the cue that she doesn’t need to sleep yet and pulls off her ventilator tube. So the ventilator is now alarming and she is getting sick so her saturation levels drop and the pulse oximeter starts to beep.

I spring from the floor tell her "No!" and re-attach her to the vent. I silence the pulse oximeter while it is catching up and notice her oxygen tube has fallen off again. (Sometimes I really wish I could just use some super-glue.) I try to look at the Fisher Paykel. I check all three connection points. Hannah pulls off the vent and twists into a position where I have to unwind the tube from her legs then reattach her to the vent. I do a quick look at the pulse oximeter hmmm 92 saturation she wasn’t off that long. Oh the oxygen tube has fallen off again ok I reattach it. The Fisher Paykel is still humming in between. I turn the Fisher Paykel off then on.

Everything is silent for a moment. I hold my breath. Hannah signs for a pacifier I find it in her bed and hand it to her. I look back down at the floor where my project on the computer is …. Hmmm maybe I can get back to work. Hannah turns away from me. I sit on the floor and roll into a laying position kind of a mini cobra stance at the laptop. I start to think about the programming I’m working on.

Trill! Trill! Trill! The Fisher Paykel is at it again. Hannah pulls off her vent and starts the cycle again. We do this about three more times. I’m thinking I should replace the temperature probe for the Humidity machine. Trill! Trill! Trill! I’m re-wrestling the vent back on to my defiant child when Robert the Daddy walks in. "Can I help you?"

I feel awful he should be sleeping he is getting up at 4:00 am to relieve me. "Sure, I was thinking of replacing the temperature probe."

"How about the circuit?" We had this problem last night too.

"Well actually the whole circuit was changed today."(Circuit is all the tubing for the vent and the dome for the humidifier) We have a limited supply we don’t just want to break into new equipment if it’s something to do more with the permanent pieces.

He stands by the crib and amuses Hannah helping to keep her from pulling off her vent while I’m trouble shooting. (My Hero) I change out the temperature probe. The trill seems to settle down. We stand there a minute or two talking to Hannah and each other. She shines in the attention then Daddy goes off to bed.

Hannah doesn’t ever want Daddy to leave so the vent power struggle begins a new. But at least I know why the ventilator is beeping. This is our machine mambo for the night.

-- Mom

Posted by parents at 02:41 AM | Permalink | Comments (1) | TrackBacks (0)

Do supporters of the Slow Food, Slow City, and All-Things-Slow Movements have kids?  I picture beret-capped couples, taking a siesta at a centuries-old, locally-owned café somewhere in Europe, swapping copies of Walden and Leaves of Grass, gesticulating silently and emphatically at favorite passages (note:  Slow Sentence movement initiated - see previous).

In our family's life, slow rises only with the moon.  It is that space between evening activities and bedtime.  Time slows from sixty-frames-a-second to two.  Parent voices elongate and deepen:  "Gabe-ree-all... get your pjs on."  "Han-nah... it's time to sleep, not play."  The kids, previously running and rolling with abandon, shuffle from activity-to-activity.  Whining is given no quarter, but quiet civil disobedience is exercised.  Gabriel takes a renewed interest in singing to his sister.  Hannah spontaneously demonstrates a position learned in physical therapy, suggesting a late-night, verge-of-a-mobility-breakthrough moment. 

Delay, feint, smile, comply, delay.  The cycle can be endless.

Like sheepherders, we corral our kids to bed (which, by the way, does not guarantee sleep or general stay-in-bed compliance), and we parents settle in to the nearby office for Me-Time.  We remain alert, waiting for Gabriel to pop in ("Just wanted to see how you are doing, Dad.") or for Hannah to call, cry, yank her ventilator off (she knows well that alarms beeping = parental attention), or decanulate (also an attention getter).

Sometimes, however, when all runs smoothly, both kids fall asleep simultaneously.  Listening to the tick-tick of clocks and the ventilator next door, we relax for a moment:  sipping coffee (or tea) at our imaginary cafés as we search the internet, save our favorite hyperlinks, and put off, for a moment, the responsibilities stacked up against us.

 -- Dad

Posted by Dad at 03:47 AM | Permalink | Comments (0) | TrackBacks (0)

My son came home today with a marshmallow peep from school. We are Jewish and don’t celebrate Easter. Yeah, yeah I know the bunny part of Easter is the pagan aspect and not the Christian part. But, I’m still trying to raise a Jewish child in a predominately Christian environment. Being a convert and now looking at a great deal of American practices from a different belief system, I find myself sometime overwhelmed by how Christian our society is. I’m not saying it’s bad, I’m just saying it is really prevalent.

I never realized how much when I was non-denominational.

And of course I’m raising children in the Jewish faith. So this week is Passover for us. I don’t normally keep kosher. But for eight days out of the year I feel I can give my children a truly Jewish experience. So I cleaned out the refrigerator and the cupboards. I have hidden any leavened food in the house. My husband and I have made a commitment to ourselves and each other to give it a go. Robert has strengthened my resolve by telling me I did a great job last year. So it has spurned me forward.

I’ve had matzah sandwiches for lunch. Avoided mixing my meat and milk and even made Matzah ball soup where I invited company over. It is fun, but I’ve been made aware of how much snacking on sweets I’ve done lately because I’m craving cookies. So when I invited the neighbors over for dinner, I decided I should make something sweet and fun for desert. I decided on Chocolate covered matzah. And I really lucked out when I turned on the TV that morning because low and behold Martha Stewart was covering some Passover baked goods. Guess what she was making? Chocolate covered matzah and her ideas were great.  I was just going to melt chocolate and drip it on the matzah. She and her guest did that, and then put on some sliced blanched almonds and kosher salt. Perfect, I have all that in the house. So I tried it and even made two types because I remembered my friend had mentioning that not all of her family was partial to dark chocolate. I made more than enough so we have leftovers.

So when my son walked in with the Peep all I could think of was having the peep sandwiched between two pieces of chocolate matzah. I mentioned it too my husband and called it a Peep Smore. I think it would be a great treat for those blended families out there who celebrate both traditions. Robert just wrinkled his nose. Oh well.

-- Mom

Posted by parents at 01:23 AM | Permalink | Comments (1) | TrackBacks (0)

As in Sallie Tisdale's The Beautiful Hospital, our family has had several not-as-portrayed-on-tv hospital adventures.  One of the more comical was the doctor that believed in The Magical Supply Closet.

He arrived at Hannah's bedside to replace her old infant g-tube with a new button g-tube.  He simply yanked the old one out and prepared to put the new button g-tube in.  Only no button g-tube was at Hannah's bedside.  He sent nurses to the Magical Supply Closet where, to his mind, one or more of each of the world's medical supplies eagerly awaited its new owner.

He grew angry when the nurses reported back that no button g-tube was in stock.  The Magical Supply Closet was empty; the Elves, on lunch.  He shouted at them.  Why wasn't a button g-tube in stock!  They checked again.  They called around to see if any g-tube could be transfered to them.  No luck.

So this doctor, busy blaming the nurses for his lack of preparation, innovated.  He used a (sterile) urinary catheter tube instead:  a true House moment.

Oh, as parents, we were so new & fresh back then:  willing to challenge the doctors, but also willing to try something new.  Suffice to say, when we went home with Hannah and monitored (with a Sharpie, we-started-here line) the fact that the catheter tube was not staying in place, coiling into her stomach instead, we called, verified that there was a button g-tube available, and had the catheter replaced quickly.

We routinely change out her button g-tube ourselves these days.  We receive one or two a month from the supply company, whatever insurance will cover per the doctor's orders.  And then we store it in our own Closet.  And nudge the Elves awake.

-- Dad

Posted by Dad at 05:50 AM | Permalink | Comments (0) | TrackBacks (0)

My laptop followed me home last night.  I had an end-of-day meeting.  I rushed out of there at 6 pm to pick Gabriel up from preschool, and there it was, hanging from my shoulder, swinging at my side like a childhood friend.

Lately, my laptop and I had grown distant, so I was surprised by its reattachment to me.  There was a time (ok, two months ago), when my laptop and I had been constant companions.   Hannah was hospitalized during the last two peak work period (end-of-fiscal-quarter).  My laptop sat vigil at Hannah's bedside with me, helping me crunch numbers as she slept, saving me from blurry-eyed embarrassment by spelling checking emails for me, and just generally watching my back.

But then there were the lean months between quarter ends.  Hannah came home from the hospital, and the nursing agency that had supported her for over two years fired her, essentially.  Simultaneously, work slowed post-year-end:  enough to complete most of my work at the office, allowing Janette and I time to figure out how to staff 6 out of 7 nights ourselves and still give both Hannah and Gabriel some family time. 

My laptop was left at work at night, alone.  Powered down, the docking station was cold comfort.  The buzz of the office settled to an ear-popping silence, broken briefly by elevator dings as a security guard or maintenance staff wandered the floor.  Like my kids, my laptop was used to being awake and active at night; now, however, it was left to its own silent reflection.

Now as we switch to a new nursing company next week, returning our nights to some sense of normalcy, my laptop has decided to hang out with me again.  I feared recriminations, but it seems to have accepted our brief interlude, knowing that quarter-end was just around the corner and that we would be together again soon.

-- Dad

Posted by Dad at 03:55 AM | Permalink | Comments (0) | TrackBacks (0)

Gabriel, my five-year-old son, was surprised to hear about April 1^st.

Posted by Dad at 03:27 AM | Permalink | Comments (0) | TrackBacks (0)

The alarm bleats 4:00am, and I roll out of bed. I walk toward Hannah's bedroom, xylophone music and television light illuminating my way. Janette is lying on the floor; Hannah is sprawled in a crawl position beside her. Charlie and Lola are arguing over who won a game of Snakes and Ladders.

Posted by Dad at 07:41 PM | Permalink | Comments (1) | TrackBacks (0)