Kintropy In Action

Gabriel turns six years old next week, but he is rehearsing for thirteen.

This morning, he woke up to the bleak world of a day without video games and tv.  The previous evening, he had backtalked to Mom, apparently to impress his friends.  I'm only reporting this second hand, but it started with something like "I don't have to listen to you" and ended with "whatever." 

I know.  I know.  If I had ever talked like that to my parents....  Well, maybe not ever talked to my parents like that, but if I had talked like that to my parents when I was five....  Oh, you know what I mean!

Anyway, Gabriel awoke to a carry-over punishment.  He was gloomy.  I called him on it.  His response?  

"Blah.  Blah.  Blah."

That is a quote.  What am I, raising Seinfeld?

Needless to say, he didn't win additional points this morning.  The walk to the bus stop was very quiet.

By the time I got home tonight, though, Gabriel received pretty good marks.  The downtime & thinktime seemed to impress upon him that backtalk (though secretly very amusing to me) would not be tolerated.

And then I caved.  Yes, I gave him back video games.  It had been 24 hours since the Incident, I figured.  Mom was headed out for a break at the movies, and I would be spending more time with Hannah.  On a Friday night, my tank is near empty:  no imaginative play left.

Janette and I discussed it with Gabriel before she left.  We had a lot of caveats and warnings for him, and he did well.  Hannah and I got some downtime, singing, playing, and watching her favorite videos; Gabriel got some downtime playing games.  Seemed like a fair trade.  We'll see if Gabriel can keep it together for a little while - at least until he's a big six year old next week.

-- Dad 

Posted by Dad at 10:47 PM | Permalink | Comments (3) | TrackBacks (0)

Robert and I were tagged from Terry at counting sheep to list seven random thoughts about our selves. So here it goes.

1. I do logic puzzles for fun.
2. I have no sense of time. Everything seems relative to me. I’m pretty sure the words waiting and room put together create a molasses effect on time.
3. I love Lego bricks.
4. I actually find TV educational.
5. My son and I just started a four-week rock climbing class.
6. I just started reading the Golden Compass for the third time. I’m trying to read it before the movie comes out. That seems to keep me focused. It doesn’t seem as cruel as when I first tried to read it the last two times. (Shrug)
7. I have a toy problem. I buy some of the things for the kids because I would like to play with them and need a change from the ones we already have.

Not very cohesive and certainly not very deep but definitely random and each statement is about me. I left Robert to do the tagging.

--Janette (Mom)

Posted by parents at 11:10 PM | Permalink | Comments (0) | TrackBacks (0)

Terry over at Counting Sheep tagged Janette and I for 7 random things about us.  So here are mine (and check out Terry's blog if you haven't already - very cool):

1. I have four Lasertron (lazertag venue in Beaverton, OR) sitting to the left of my keyboard.  Gabriel and I played two games over the weekend.  Despite being on the same team, we both managed to tag each other at least once during our last game.  So much for accuracy.
2. When I write by hand, I prefer pencil to pen.  When I write by hand, my hand also cramps terribly.  Did we really use to do this all the time?
3. My best Chanukah present received was the holiday where my parents bought us office supplies.  No joke.  We opened gifts and had reams of paper, pens, and our own manual typewriter.  Very inspiring and off beat.
4. I am not sure what the best gift I ever gave was, though.  I so try to delegate the whole picking-out-the-gift thing to Janette.  But if you are family or friends reading this, my favorite gift was the [insert here] I gave to you.  It really meant something to me.  I hope you liked [insert here] and still [play with it, listen to it, use it] reguarly.
   
5. Head trauma runs paternally through my family.  My grandpa was shot in the head (survived).  I had brain surgery following a car accident (survived, too).  Gabriel fractured his skull at nine-months (healed up fine).  My dad, somehow, got skipped.  And that's okay.  Hannah still beats us all, hands-down.  She's quite competitive.
   
6. I have over 2,000 vinyl albums and 12" records from the late 70s to mid 80s.  Came in handy when I was a wedding DJ.  Even got to play Rain Tree Crow's "Blackwater" once.
   
7. I used to write "poetry."  Must put in quotes because it was really, really awful stuff.  Several friends will confirm.  Should you find some, burn it.  The fire will feel dirty and used, but will get over it.

As far as tagging seven people, should you like to write seven random things, how about Jodi, Jacqui (if/when you have time - hope Sumo is doing better), Coma Girl, Kailani, Steph (one who can definitively tell you how awful my poetry was), and, ah, anyone else that wants to voluntarily submit to this challenge ;-). 

And if you've recently done a random list and I've retagged you, many apologies.  Still catching up on my reading.

-- Dad

Posted by Dad at 10:38 PM | Permalink | Comments (1) | TrackBacks (0)

After showing Gabriel how to play pool, Robert went off to do an errand. Gabriel asked me to play with him. I gathered up Hannah and sat her on the floor next to the table. Gabriel and I started; he stopped to occasionally tussle Hannah’s hair. This is something he can’t resist, and it annoys her to no end.

To ward off Gabriel’s advances, Hannah started working in earnest on her mobility. She would pop up into a sitting position and use her butt to scoot across the floor.

Gabriel meanwhile got bored with the regular game of pool and pulled his Star Wars figures up to the table and said, "Let’s try to knock them down. Let’s pretend they are asteroids knocking into them."

I thought it was a great idea; it was definitely easier than trying to get balls in the pockets. We played for awhile knocking down figures where we got one point for each figure we knocked over. If we happened to knock a ball into a pocket, we would get the face value of the ball we knocked in.

In the middle of this fun, I looked down at Hannah and found her almost scooted to the front door with her feeding tube very taut.

--Mom

Posted by parents at 11:11 PM | Permalink | Comments (1) | TrackBacks (0)

Before the kids, I used to read several novels in a week. Now it takes me several weeks to finish a novel. Last night I finished Magic Lost, Trouble Found. I started it at least 2 to 3 weeks ago.

I loved it. It had the three Ms I love in a fantasy book, which are magic, mystery and mayhem. The lead character is well developed including a great sense of humor. She requires help from a menagerie of friends. I can't wait to read the next one.

Lisa Shearin is an entertaining writer. As far as recommends go if you like the authors Anne Logston, Patricia C. Wrede, Tamora Pierce and Dawn Cook you will enjoy this author, too.

--Mom
    

Posted by parents at 10:30 PM | Permalink | Comments (0) | TrackBacks (0)

Gabriel is learning to read.  Read, Gabriel, read.

Gabriel shares a book with Hannah.  Share, Gabriel, share.

It is night time.  It is story time.  It is quiet time.  Sit, Gabriel, sit.  Sit.  Focus.  Sit.  Sit please.

Read with me, Gabriel.  Sound it out.  Let's try together.  Gawain's Word time.  Our fingers are the knights.  "S."  "leep."  "S," "leep."  "S-leep."  "Sleep!" Good job, Gabriel!

Good night, Gabriel.  Let's turn on your radio.  XM Kids.  What, the Star Wars Cantina Theme?  Dance, Gabriel and Dad, dance!  OK, time for bed.

Mom is reading to Hannah.  I visit Hannah.

Hannah smiles.  Sing, Daddy, sing!

-- Dad

Posted by Dad at 09:26 PM | Permalink | Comments (0) | TrackBacks (0)

Take two stories from CBS television this long weekend (both of which were introduced as "special kids" stories). 

The first highlighted a cheerleading team:  The Destiny All-Stars.  Under the banner "Cheers From The Challenged," reporter Jeff Glor embraced the story of Chole, a 14-year-old girl who experiences autism and Down's Syndrome.  He pointed out:

"Chloe, who's 14 years old, has a developmental disability. But on the 'Destiny All Stars' cheerleading team, that's nothing unusual, because everyone does...."

Apparently, this separate-but-unequal cheerleading concept is catching on:

"Destiny, which is based in Gaithersburg, is riding a nation-wide wave that has doubled in size in the past year. There are nearly 160 squads of special-needs cheerleaders in 34 states. Dr. Allen Crocker, an expert in the field, says the program bucks society's tendency to leave kids with disabilities behind."

The story was constructed to push all the usual buttons. 

• The problem:  Chloe didn't interact well before joining the squad.  She was lost among her typical peers.  
• The cure:  Separate Chloe from her typical peers.  Put her on a cheerleading squad for kids with developmental disabilities.  Chloe blossoms, progressing socially and developmentally.

Heartstrings pulled.  Message delivered.  Segregation heals all.

Contrast this with a story during the Thanksgiving football games on the same network about Katy Marchman.  Katy is a huge Baltimore Ravens fan; she also has a diagnosis of Angelman syndrome. 

In this story, though, the reporting team focused on how big a football fan Katy is.  Katy gets excited about going to a game.  Katy keeps a scrapbook of team photos and likes to look through it.  Katy uses her voicebox board to cheer during the game.  Her family and the team itself supports her as needed, but Katy's owns her fandom.

Katy, in other words, is a person, first (actually, a FOOTBALL FAN first).  And that isn't special; it's just how things should be.

-- Dad 

Posted by Dad at 09:49 PM | Permalink | Comments (2) | TrackBacks (0)

For the first time ever in our family, we pulled ourselves out of bed at 4:30 a.m.to participate in the American Tradition of Black Friday.  For those of you who don't know what Black Friday is, it is the day after Thanksgiving when retailers open extra early with extra special deals.   

We have wanted a pool table for the five years we have owned this house.   Robert was sure he wanted a regulation size one.  We have no room for that currently.  My art area is in the space where a formal living room would go and our living room is in the room where a rec room would go.  Our patio is still filled with wood from my two-year playground structure project.   So he bent his will last night as he was looking at the ads and found a 6-foot table that turns into an air hockey table and has an attachment for becoming a ping-pong table.   It normally ran around  $400 dollars, but if we got to Sports Authority when it opened at 5:30, we could get it for $200 dollars.

We roused Gabriel. He was sleepy and adorable.  Hannah still had a nurse till 8:00 so she got to sleep in.   As we drove there, the roads didn't look so bad, and I doubted there would be a line (it is just Sports Authority after all).

The line stretched the mini mall.   We got out of the car to stand in line.   The people around us were counting how many were in line because there was also a deal for a free gift card with the first 100 people in the store.   It was frigid out with a nice arctic breeze.  Gabriel and I went back in the car to warm up while Robert waited in line.   

Everyone was polite, and there was no mobbing.  We got the table we wanted.  The checkout line took 40-50 minutes though.    All that was left was the fun world of assembly.

--Mom

Posted by parents at 10:39 PM | Permalink | Comments (0) | TrackBacks (0)

Having recovered from the cold (after 20 hours of sleep), I headed out to Fred Meyer today.  A toy was stuck in my mind.  It's a combo mirror/music maker/dance thing I saw online.  Amazon promised 1-3 months wait; Fred Meyer, conveniently, had it sitting on the shelf, waiting for me.  I grabbed it, threw it under an arm (a rather big box), and headed to check out.

This was Hannah's gift.  Gabriel is rather easy to shop for these days.  If it's a video game, or if it ties into Star Wars, he's good.  Hannah is another story.  Does it sing?  Can she operate it with gross motor?  Does it have some fine motor, too.  Most importantly, can I see her enjoying it and playing with it for hours?

The big box under my arm seemed to fit the bill.  I traded pleasantries with the cashier.  She dropped the box.  We laughed at the instant stress test.  I swiped my card, and I headed toward the door.

A man passed me.  He looked harried, tired.  He wore a wool jacket.  A white sticker shouted at me from below his jacket's lapel.  NICU #3**.  I passed him quickly and he, me.  Even if I had turned to say something, he wouldn't have seen me.  He was preoccupied.  He was making the quick run:  a father, inbetween home and hospital, grabbing an essential. 

Hannah's gift was still tucked under my arm.  I had refused the bag:  my one nod today to the environment.  If I could have turned to him, I would have said.  Almost four years ago, I was you.  My daughter went in for eight hours of testing and stayed two weeks.  The hosptial released her with a g-tube, some oxygen, and best wishes.  Now I'm bringing a gift home to her to put in the closet for safekeeping until Chanukah.  She's at home now, probably watching her music videos, clapping a demand for the music to continue. 

Everything is possible.

We passed each other.  NICU sticker.  Tired man.  Wool jacket.  In a hurry.

I walked out the automatic doors.  I found my van and unlocked it remotely.  I loaded Hannah's big box in the seat next to me.  And I drove home.

-- Dad 

Posted by Dad at 12:48 AM | Permalink | Comments (2) | TrackBacks (0)

Yesterday, I started sneezing uncontrollably.  It was only a matter of time.

I called in sick this morning & holed up in the bedroom, rolled up in blankets with a high temp most of the day.  Kind of a pre-Thanksgiving holiday:  Cameron Frye Day.  Ferris Bueller didn't come to disturb me, though.  Janette & the kids were saints, allowing me to sleep 8-10 hours.  Gabriel came in with his doctor's kit to evaluate my illness.  Janette made chicken soup for dinner.  Hannah was somewhat patient for her songs.

Tonight seems better, at least with some ibruprofin on board.  Tommorrow, I start my five day holiday; hopefully, the fun part is already over!

-- Dad 

Posted by Dad at 09:02 PM | Permalink | Comments (2) | TrackBacks (0)

Today, I hung out and played a new video game with Gabriel. It was fun problem solving with him. We laughed when victorious and yelped when frustrated. We definitely played for too long. But sometimes it is good to have days like that.

--Mom

Posted by parents at 11:14 PM | Permalink | Comments (0) | TrackBacks (0)

We have a new day nurse Hannah and I, are in the middle of training. It has been awhile since I’ve had to this so I’m trying to remember how it goes.

1. Don’t assume anything.
2. Some nurses don’t remember regular young children safety.
3. Stop what I’m doing and talk directly to the person when giving an instruction.
4. Keep reassuring them.

Hannah’s response when I keep asking her about the new nurse is to roll her eyes and shake her head.

I think things will work out. I need to go to bed I need to escort them both to school tomorrow.

--Mom

Posted by parents at 10:52 PM | Permalink | Comments (2) | TrackBacks (0)

Our office sits at one corner of a right triangle.  Gabriel's room is to my right; Hannah's, directly behind me.  This is the intersection of our world.

As I type, I hear an orchestra rising from Hannah's room:  bow strings sing over the humidifier, helping sooth her kicks & starts back under the covers.  Gabriel's room glows with the blue light of his XM radio.  XM Kids, even in volume, helps him rest, knowing a virtual companion is close by.

Down the hall, Janette sleeps off the early morning nursing shift.  Four heartbeats and the click-clack of typing:  a triangle and a parallel line at the intersection of our world.

-- Dad

Posted by Dad at 04:33 AM | Permalink | Comments (5) | TrackBacks (0)

A couple weeks ago, after Gabriel got off the bus, he started screaming.

"Oh no! I left it on the bus."

"What Gabriel?"

"The chicken thingy"

"What chicken thingy?"

He then decided everything was OK and proceeded home. The next day the neighbor called. "Does Gabriel want his turkey homework? A. (Her son) brought it home, he found it on the floor of the bus and thinks it is Gabriel's."

We went to get it. It was a long tan paper curled into a tube. It had some nice creases from spending overnight on the bus. When we got home I unrolled it. It was a giant outline of a turkey with the following directions:

I stared at it on the kitchen table as Gabriel went off to play a video game. This was the second home art project. My son does not like to cut, paste, glue or color. I am an artist and believe me I have tried setting up art projects before. The last project was an all about me project poster where I made him sit next to me and help pick out pictures to print out to paste to the poster. I pushed him through cutting things out where after just one cut on a piece of paper sent him into excuses of other things to do.

He also starts by saying, "I can't do it!"

I always respond with "Yes, you can!"

Then his quality control is his next line of defense. "I'm no good at it. I can't cut straight."

"You have to practice in order to be good at something. That is what these projects are about, practicing. You couldn't do a forward roll well when you first learning. You practiced and now you’re great at them."

He then zones off into space. "Can I go play a video games?"

"No, we need to finish your homework." he then plays around, he won't pick up the scissors. When I leave him alone to work on it he has a meltdown if he makes a jagged edge. I've never made an issue about mistakes, but he acts like it's the end of the world and we go back through the previous dialogue. He then goes through a series of asking to play video games till I've told him he will loose them for the day if he doesn't stop asking. The whole time he is still working on the first cut out.

So this all ran through my head along with my frazzled phone call at the end of the project where I called my neighbor who is actually a teacher and explained how I was afraid that I did most of the work. She told me to relax, that the point of this type of Homework for Kindergartners was to have the parents and children work together. The idea is that the parents show the kids how important the homework is. She said the other point is to get the parents and kids talking to each other about school. She said the teachers know that kids this young are not self-starters.

With this in mind I let go and looked at the Turkey with fresh eyes. It had a big body and seven prominent feathers sticking out of it. I decided to use the project as a place to discuss Thanksgiving and the pilgrims.

So I asked Gabriel to name seven things he was thankful for. He named Luigi (from Mario Bros), Tae Kwon Doe, Sweets, and Superheroes. He ran out of ideas after this so I suggested Daddy, Hannah and me. He liked those ideas. So I made pages of repeating pictures of the seven subjects listed above then used those to make the different feathers. I had him paste those on as we talked about thanksgiving.

For the body I made a repeating pattern of a boat that looked like the Mayflower super imposed with a photo of Plymouth Rock. I also had a repetitive pattern of the pilgrims’ hats and an old ink drawing of native Americans. They made up the details of the main bird.

The last piece was for the little wing. I took out stickers of the different planet and asked him what planet did he think people would explore next. He choose Pluto. We finished it off with a googling eye and some glitter outline detail. He had me write his name because his focus was gone.

Of course the only thing he retained from the conversation was that the Pilgrims traveled on a boat and a lot of people died.

I had fun and Gabriel endured it like a champ.

--Mom

Posted by parents at 12:30 AM | Permalink | Comments (1) | TrackBacks (0)

My parents bought us a new trashcan; I like to call him "Trevor."  Trevor is a robot, of sorts.  His main command is to sense when you are near, open his mouth, and accept trash.  He operates like those faucets in posh public restrooms these days.

And like those faucets, he's not perfect when it comes to sensing your presence.  But he is social.

If you walk by Trevor on the way to the sink, he smiles and opens his mouth.  "Can I help you?  Any trash?  Any trash?"  He's kind of like that over-eager sidekick mandated in the Disney animation world.  If you pass by on your way to the fridge, he pops his top, grinning.

Unfortunately, Trevor also has halitosis.  Evertime he smiles, he belches something of a reverse potpourri:  leftovers, cheese, all things stinky mixed together in a toxic bloom.  But his eagerness to share and contribute is impressive, if daunting.

Our old trashcan, a plain white plastic kitchen can, stands silently next to Trevor, giving him the cold shoulder.  Janette has repurposed her, stenciling her with recycle icons on top and sides.  She operates via a foot pedal (though she's old and often gets he mouth stuck wide open).  She accepts all things recyclable, and, despite all of Trevor's feature-driven eagerness, seems content with her lot, even in this brave new world.

Posted by Dad at 11:43 PM | Permalink | Comments (0) | TrackBacks (0)

We (and by that, I mean our server, Yahoo) seem to be having some technical difficulties getting our blogs published consistently.  So the long pause you hear isn't just Mon-Tue night nursing shifts, a drive to Salem for a committee meeting, Janette recovering from illness, & a long week in general - it's the technical gremlins ;-).  We'll be back here soon, provided the server cooperates.

-- Dad 

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

You can tell this picture was early in this weekend's Wordstock adventure.  Gabriel was already a little squirmy, but everyone is smiling still.  Soon, Gabriel would switch from

• dragging me in one direction or another every few seconds to
  
• complaining that he was hungry to
  
• pantomiming an empty stomach with repeated circular motions at his stomach while looking up at passer-bys with sad, velvet-painting eyes to
  
• dropping a $4 hot dog, the salve for his apparently ravaging hunger, on the floor after one bite

Ah, our weekend adventures - I really do look forward to them.  Really.

-- Dad

P.S.  You can read more about our Wordstock adventures in Janette's blog here. 

Posted by Dad at 04:32 AM | Permalink | Comments (2) | TrackBacks (0)

Every year here in Portland, there is an event called Wordstock. It is a convention of independent book publishers of the Northwest. Robert and I always look at the ad and salivate at the idea of finding the next great read off the beaten track. This year was our second attempt at walking the festival.

Hannah liked being out and said "Hi" to anyone who looked her way. Our son, however, had different plans. He had his own agenda for the day and that was to play video games. Five minutes in, he began by trying to pull us every direction, then proceeded through excuses:

• "I’m Tired!"
• "My stomach hurts!"
• "I’m hungry!"

Even though we had all had lunch before we went to the event, he claimed he was hungry. Robert took him to the snack area and left me and Hannah to wander the event. Hannah like all three year olds wants to move more, so actual browsing didn’t happen. It was a look while constantly in motion. I returned to give Robert a chance. Robert was not happy. Gabriel had dropped his hot dog and was pouting over the conversation. Robert went off with Hannah.

I asked Gabriel if he understood why he was in trouble.

"I shouldn’t of told you I was hungry?"

"It’s always OK to tell us your hungry. It is not OK to demand that we only do what you want to do."

After some humming and hawing he said, "I was bored."

"I’m sorry you’re bored. Not everything is about you. Daddy and I do a lot of things that you find fun that we think are boring, but we don’t bother you the whole time about wanting to go. We let you have fun. You’re not being fair to Mommy and Daddy."

He then proceeded to drop his chips and Robert came back frazzled. Hannah was done. We agreed Gabriel could have no choices the rest of the day since he didn’t let us do the one thing we wanted to do. He had no choice of t.v. shows or what video games Daddy played.

Once we got home I looked at Robert and said, "You know the only one who got a book at the event was Gabriel, and he got two."

--Mom

p.s. Next year we are going to figure out when it is ahead of time and make arrangements for the children.

Posted by parents at 08:59 PM | Permalink | Comments (1) | TrackBacks (0)

OK, let's take two hypothetical patients:  one, an almost six-year-old boy (we'll call him Patient G); the other, a three-and-a-half year old girl (we'll call her Patient H).  As I said, purely hypothetical.

Patient G:

A week-ago, had a runny nose and some wheezing.  A week later, runny nose is gone, but wheezing has turned to coughing up sticky yellow phlegm.  Needs albuterol a couple times a day.  No fever.

Possible diagnosis:  viral infection, bronchitis (viral or bacterial), etc..

Possible treatments:  continue with albuterol.  Add an antibiotic at a week given that symptoms are continuing and progressing.

Patient H:

A week-ago, had a runny nose and some wheezing.  A week later, runny nose is gone, but wheezing has turned to coughing up sticky yellow phlegm.  Needs albuterol a couple times a day.  No fever.  

Oh, Patient H uses a trach and, as needed, a ventilator for support.  Parents report more regular suctioning and an increased heart rate - usually a sign of infection in this child.  Patient H has also shown skin outbreaks that were common with strep the last several cycles.  Patient H has a history of harboring strep and psudeomonus in her body.

Possible diagnosis:  viral infection, bronchitis (viral or bacterial), strep, etc..

Possible treatments:

    First visit - ignore nurses notes regarding wheeze and breathing treatment prior to visit (as well as parental input regarding standard Patient H pattern last year during same season).  Ignore skin irritation.  Pronounce her well.

    Follow-up phone call from parents (five days later) requesting a revisit and/or antibiotic - panic!  advise her to go to hospital (but refuse to dispense antibiotic)

    Additional follow-up phone call from parents - OK, approve a culture for infection from trach sputum, but no antibiotic until pathogen identified.

    Additional, additional follow-up phone call from parents - Fine.  It's been a week.  We'll call in an antibiotic; just stop calling.  Maybe she does have a bacterial infection like strep, maybe, or pseudomonus (yes, actually she's had that quite often, hasn't she?).  You could be right - maybe....

***

As I said, purely hypothetical (mainly because Patient G never came down with the symptoms above -er, ah, you know what I mean by hypothetical, right?).  I don't blame the doctors for trying to avoid an antibiotic; this is a good, general strategy.  But a few observations:

• Treat the patient, not the literature.

During the first visit, I heard "well, typically" and "most kids" a lot in describing Patient H's symptoms and ways to deal with it.  That laptop in front of you:  it has her chart.  Open it and read it.  I'm a data analyst by trade; trust me, she has quite the infection pattern when it comes to skin irritation/breakout/redness + respiratory symptoms + phlegm.  The pattern is very reliable, particularly during the Fall and Winter seasons.

• Understand that the extra equipment supports Patient H; it should not be used to delay care most kids without supports would receive.

I'm pretty sure Patient G would have received an antibiotic after a week without 1) a panic call to toss the patient over the wall to hospital care (our favorite place to renew our MRSA subscription BTW), 2) a request to test the phlegm to confirm the infection prior to prescribing antibiotics after a week of infection and bronchitis and/or pneumonia symptoms.

• Listen to the primary caregivers (including home nurses in Patient H's case) & the patient.  They spend a lot of time with the patient and might be just a wee bit more informed of her health status than you.

We have a lot of nurses that read our blog, and I'm sure not every single parent is a reliable source for info on the health status of their kids.  But I'd be willing to bet most are.  All parents should give input, and that input should be digested along with the observable symptoms.  Together, caregiver input + observable symptoms should inform the diagnosis and the treatment path.

So Patient H now has an antibiotic on board - certainly a better interim step that hospital admission when that is not warranted (at least at this stage).  Let's work together, doctors, to keep her well, shall we?

-- Dad (without his morning caffeine, I might note in my defense)

Posted by Dad at 09:51 AM | Permalink | Comments (1) | TrackBacks (0)

Yesterday, I took Gabriel to the airport to meet my Dad for dinner. He lives in Florida but is flying out here almost weekly for business, so we try to see him every time we can. He brought a work associate to the dinner.

My son, being his normal charismatic self, said "Pop Pop, do you know what?"

My father chuckled, "What Gabriel?"

"Did you know we have a President right now who Mom and Dad think have made some bad decisions."

I covered my mouth and hid my face; I was sure my face became red, and I fought back a laugh.

Gabriel was really serious as the two adult, retired Marines looked at me. My dad looked non-plussed and his associate/ friend said; "You’re starting young with the politics."

I shrugged. "Gabriel asked the other day if everyone who has become a President of America died. So Robert and I were explaining about how that it doesn’t happen with the job and that we have one now who is alive and several retired living ex-Presidents. Not just Lincoln and Washington."

Gabriel smiled "Yeah, and Mommy and Daddy don’t agree with the right-now President."

Dad laughed, "Gabriel, when you’re in charge, you have to make a great deal of unpopular decisions."

I turned to Gabriel "Yeah, Gabriel, Pop Pop actually does agree with some of the current President’s decisions."

Gabriel eyes opened wider. "He does?"

I looked at my Dad and his colleague "Yeah, but that is the cool thing about America: you can talk about not agreeing with the leaders, and it is OK."

Dad’s friend look at me, "And you don’t?" He seemed surprised.

I look at my Dad, then back at him with a smile "Yeah, I’m a Liberal Democrat."

He looked back and my Dad who shrugged and took a sip of beer.

As I look back at this conversation, I realized that my son was actually trying to engage my father in a conversation about something my Dad loves: politics. Maybe eventually he will have a grandson who can engage his mind as much as my husband does.

--Mom

Posted by parents at 10:39 PM | Permalink | Comments (2) | TrackBacks (0)

We're celebrating inclusion in a new blog carnival (for us):  Grand Rounds over at our friend Terry's site, Counting Sheep.  It's always easy to recommend Terry's site, particularly if you're curious about all things anesthesia.  What really goes on in the operating room?  What advice does an anesthesia nurse have for incoming patients?  Terry covers all these things and more.

This round, she is focusing on the topic of "pain."  Help us celebrate our first contribution to (and Terry's first turn hosting) Grand Rounds by clicking here and checking it all out!

Other Carnivals we're contributing to and/or reading & checking out:

• Carnival of Family Life - this issue's theme:  Guy Faukes Day!
  

• Change of Shift (another cool nurses' carnival)

• Disability Blog Carnival:  this issue:  How Do You Relax/Unwind ; Last Issue:  If...

• Homeschool Carnival - cool discussion on teaching, learning, and parenting, among other things
  

As always, these blog carnivals are a great way to find new favorites.  Enjoy them! 

-- Dad 

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

Posted by Dad at 09:51 PM | Permalink | Comments (0) | TrackBacks (0)

We are comic readers in this house. Unfortunately, we are not hardcore, but we have very close friends and family that are. So we can participate in conversations about the comic version of an idea compared to the movie or animated versions of the same characters.

Lately, we have introduced Gabriel to X-Men. For those who are unfamiliar: X-Men is about a society suspiciously like ours where people are born with amazing abilities like the ability to spontaneously heal or control weather. X-Men have been out forever – way before the show Heroes. The main message of X-Men seems to be that society is terrified of what is different and will do everything it can to eliminate that which it can not control.

I used to think this view of society’s bias was cynical. Thinking outside the box and being different was something I was always proud of. Having a child that experiences physical and developmental disabilities, however, has shown me that society has a way to go on integrating and making everywhere accessible.

At the same time, I am wondering how I will respond when we start reading comics to Hannah. Maybe she’ll ask why she didn’t get the mutation that lets her walk through walls rather than the one that makes her have to manually map connections between her right and left brain. We’ll explore it together, and I think we’ll find a new superhero in the making.

--Mom

Posted by parents at 10:59 PM | Permalink | Comments (0) | TrackBacks (0)

So at 1:45 pm we made it to the Dojo. Gabriel was testing for his orange belt. There were four other children testing that day. I’d never been to one of these before, so I wasn’t sure what to expect.

Their ages ranged from 4 to 8. The children were told to sit in a straight line.

Hannah, who had not had a nap, had no patience for this. She carried on, so her Zaddie took her for a walk. Gabriel clapped for his teammates as they showed off their skills. From time to time, I could watch his sitting stance and expression go into that a-person-off-somewhere-else glaze, but he returned often enough to clap and "Kia!" at the right times.

During Gabriel’s turn, he showed enthusiasm and completed two perfect front rolls. He could not remember his goals, so after the ceremony, we went over them, and he was able to tell his Sensai them.

1. Do morning chores (he suggested this; we had none in place before)
2. Listen to Mom and Dad the first time we ask him to do something
3. Learn to read a level 1 book by himself.

These are goals he will need to accomplish, besides learning new techniques, in order to get his next belt. He signed a contract to that effect.

Have I mentioned yet I love Tae Kwon Do?

Gabriel has already taken ownership of these goals. He asked me this morning for chores and worked pretty diligently on listening the first time. He is also showing more patience in sounding out words. Dad and he are even working on push-ups and sit-up together.

--Mom

Posted by parents at 10:58 PM | Permalink | Comments (1) | TrackBacks (0)

"Hannah - not in the mouth."  Hannah and I sit on blankets in the family room, facing each other. 

A purple peacock figure dangles from Hannah's mouth.  Nearby, Noah's ark, its roof ripped off, lies open and empty.  Animals are scattered across the blanket.  It seems Noah was unsuccessful in shepherding his cargo safely to its destination.

"Not in the mouth, Hannah."

We've been working on this for a week or two.  Hannah's classmates at preschool have made great progress in helping Hannah get beyond the oral fixation:  the wonders of peer pressure!  She has chosen not to bring those lessons home, however.

We've read that kids that use a trach often have an oral aversion.  With food and liquids, this is true from Hannah; I think she instinctively protects her airway, particularly after so many bouts with aspirational pnemonia as an infant.  With toys, though, everything still goes in the mouth. 

I admit I knew Noah's animals would be orally tempting.  Hannah has been putting those juicy little plastic morsels in her mouth since we celebrated her new found abilities to select, grasp, and hold.  Now it was time to move to the next level, though – to challenge her to play with the toys, not Godzilla them.

Janette has been working on this with Hannah, too.  The previous day, I had watched Hannah pick up a Little People toy and promptly march it to the guillotine.  Mom had cried, "Ahhhh!  Not my head!" and provided other dialogue and sound effects.  Hannah, an efficient executioner, had ignored all pleas. 

"Hannah, if you take it out of your mouth, I'll sing a song."

Pop!  The peacock drops lifelessly to the floor.  Hannah smiles and claps enthusiastically, ready for the first of the seven or so songs I sing regularly.  When I finish, she, of course, grabs another animal and chews on it for ransom.  We repeat our routine for several songs.

All of Hannah's behavior shows me (again) that 

• It is still easy for me to underestimate what she can and does understand
• Positive reinforcement still works
• Hannah has me completely wrapped around her little finger 

Maybe Noah and team will fair better tomorrow

Posted by Dad at 09:10 PM | Permalink | Comments (2) | TrackBacks (0)

I can see! Yeah!

Wednesday, October 31, half way through the day, I was eating a truffle. It was coated in cocoa powder. Suddenly, my eye felt dry like the cocoa powder had gotten in. I grabbed some saline and rinsed my eye. It still felt irritated.

I proceeded through the day with finishing touches on the kids’ costumes. By the time it was time to go to my brother in-law’s, I was sure I had pinkeye. Gabriel and Hannah had pinkeye on the 19^th and had been treated for it. But here this was a week later, and I was coming down with it. To top it off, that night we were the night nursing shift. My eye continued to feel dry and itchy. Insanely itchy! I wanted to go home and stick my head under a facet and let water run through my eye.

I made it through dinner and trick-or-treating as my eye burned and began to blur. I could feel gunk coalescing at the corner of my eye. I gave in and took a Kleenex to itch and wipe at it. We made it home where I disappeared to drop more saline in my eye, and I even tried washing it out with no-tears baby shampoo.

We settled the kids down. I looked up pinkeye online, and the sites suggested warm compresses could help. So I microwaved some water and sat a pile of gauze next to me. I pulled out a new bottle of Purel to cleanse my hands between compresses. I tried to sleep on the floor next to the trashcan. Sleep wasn’t easy. I would place a compress till it was too cold, then I would toss it into the trash. When Robert woke me up at 2 am, he winced and sent me to bed. I took a shower and went to bed; I took my bowl of water and gauzes with me.

Robert took a medical day and made me a doctor’s appointment. Which was good. My right eye was bloated, leaking, and I it took great effort to open it. There would have been no way I could of drove. Luckily, we had a day nurse so Robert only had to wrangle Gabriel and me into the doctor’s office.

When we walked into the office the nurses said, "We are going to take you back right now."

I left Robert to do the check in stuff. I didn’t touch anything while they weighed me and escorted Gabriel and I to the examination room. Gabriel looked up from his game boy, "Are you going to get a shot?" I had both kids get their flu shots when they had pinkeye.

"I don’t think so."

A minute after Robert made it to the room, our doctor came in. He paused, smirked, and laughed. I was a sight. The great thing about him is he became my doctor right when Hannah was in PICU (Pediatric Intensive Care); he knows what my life is like. I don’t have to explain things; he knows I don’t come in unless I have to. He listens; he actually treats me in regards to what Hannah has had. He knows that there is a symbiotic nature between parents and children, so he asks relevant questions.

He backed up a foot and asked, "Anything else new and weird."

I mentioned some spots I thought were deep pimples.

He looked at them. "I don’t know. I’m pretty sure they’re not Shingles, but I’m sending you home with a lab kit in case they start to ooze."

"Well, Hannah carries Strep and Pseudomonous. She hasn’t been positive for MRSA lately."

He pauses over his notes, "What antibiotics don’t work for Hannah."

In other words, he knows I’m exposed to her bugs, and if they are superbugs, the average antibiotic won’t work. He gives me antibiotics and eye drops and glances at Robert. Nothing yet for Robert until he woke up the next day.

--Mom

Posted by parents at 08:59 PM | Permalink | Comments (0) | TrackBacks (0)

In 2004, Hannah arrived on her own schedule.  By that, I mean early – emergency early.  Her body had drawn its own ultrasound map, slowing and then ending growth somewhere toward the end of the 2nd trimester.  When she was born, we didn't know what to expect.

Over the next six months, we figured out much of the medical stuff.  We moved from feeding syringe and breathing triage at three months to trach and ventilator care at six months.  When Hannah became ventilator dependent, she qualified for in-home nursing care through the Oregon MFCU Medicaid waiver program.  Suddenly, we had support.  Nurses trained us.  We became expert, one-patient RTs.  And we got to raise our daughter at home with our family.

As our life stabilized (that is certainly a relative term), Janette and I wanted to give something back.  Here we were, getting fantastic support that allowed us to keep our family intact and healthy; we owed someone something.  Janette wanted and needed to continue to focus on Hannah; I decided to go out foraging for that something.

That's where Partners In Policymaking came in.  In late 2005, I was accepted into the Partners program.  I traveled down to Salem once a month and jumped into Disability Advocacy and Leadership 101 with my classmates.  We listened, learned, and shared.  We built skills that would help us understand and influence policies that impact people and families that experience developmental disabilities.

I graduated in September 2006.  I looked for ways to use my newfound knowledge and enthusiasm back in the community.  Some of my efforts faltered; some succeeded.  Several continue.

In big and small ways, many in our Partners 2006 class have also found ways to contribute since graduation.  Some graduates advocate for educational and community inclusion.  One speaks at local schools, describing her own experience growing up in those schools.  Two started and lead the popular & growing All Born In conference each year.  Several serve on the board of Self-Advocates as Leaders (SAL).  One graduate even serves as a State Representitive.  All of us, I think, continue to develop ways to contribute.

Maybe you would like to contribute, and you are looking for a way to get started.  Well, if you live in Oregon, the Oregon Partners In Policymaking program is accepting applications for the 2008 session.  To learn more, click here. 

The deadline for receipt of applications is November 23, so apply ASAP.  If you are wondering if this is for you, don't just take my word for it; listen to what some other Partners' graduates have said:

Q:  "What was your favorite aspect of Oregon Partners in Policymaking?"

Answers:

"The constant messages that our kids have rights and futures that are worth fighting for. Knowledge that we are not alone. Highlights: Kathie Snow, Michael Remus, David Pitonyak, George Braddock."

“An amazing, empowering program for advocates who wish to learn their way through legal, moral, and ethical maze the government and different programs stick us in."

"Focusing on the BIG PICTURE, or the problem instead of the symptoms. I didn’t realize how caught up I was in day-to-day and not trying to improve...."

More graduates speak. 

Quick link:  APPLICATION to OREGON PARTNERS IN POLICYMAKING (NOV 23rd deadline!)

Leave me a comment or email me at info@kintropy.com with any additional questions about my experience with the program, and I'll be happy to reply.

-- Dad 

Posted by Dad at 08:51 PM | Permalink | Comments (0) | TrackBacks (0)

Setting:  Backlot, Stage 6.  Two bugs lean against a palm tree prop, near the Star Coaches.

Bug #1:  Wonder which parts we'll play?

Bug #2:  I'm just happy to make it, you know?

Bug #1:  Yeah.  Speaking parts - told 'ya!  [Faint buzzing - looks around]  Hear that?

Bug #2:  Oh, sorry.  [Lifts small worm from belt].  My pager.

Bug #1:  New model?

Bug #2:  Yeah, the Parasite.  We both need each other.  Makes it cheaper which is important, you know.  Another call at the Kintropy house.

Bug #1:  Wow, they keep you hoppin'!

Bug #2:  Yeah, but what's a bug to do?  Pink-eye all around.  Mixing in some bronchitis, too.

Bug #1:  Jeees.

Bug #2:  [Reading pager]  Went to the doctor & got eye drops.  Pink's getting evicted - she's so not going to be happy.  Bronchitis might stay for awhile, though.

Bug #1:  So you got an opening, then?

Bug #2:  may-be...

Bug #1:  You should consider a friend of mine.  A lady-friend.  She's looking for a place.

Bug #2:  You two close?  She have good references?

Bug #1:  Casual acquaintence.  Second base.  Swapped some cells; you know the drill.  Cute, though.  What was her name... Marissa?  Alissia?

Bug #2:  Mer-sah?

Bug #1:  Ah, man!  She said I was the only one!

Bug #2:  Nah, she lived at Kintropy for six months last year.

Bug #1:  Really?  Ah man, I could've shacked up with her there!  Why'd she leave? 

Bug #2:  Vancomy –

Bug #1:  Don't even say that word!

[Bug #3 steps out of the stage door and joins the other two.  Bug #3 stares off into space.]

Bug #3:  Dudes.

[Bug #2 & Bug #1 nod] 

Bug #1:  Hey, ah, dude, got any idea what our parts are?

Bug #3:  Oh, yeah.  Surfing thing.  Ride the wave, you know?

Bug #1:  Let me guess...

Bug #2:  you're the star?

Bug #3 [brushing back antenna]:  Got that right, dudes.  Awesome, huh?

Bug #1 & Bug #2:  Figures.

-- Dad

Posted by Dad at 08:17 PM | Permalink | Comments (2) | TrackBacks (0)

Setting:  Casting office - waiting room

Cast:  Three, green, bloated, antropomorphic bacterium, sitting on stiff waiting room chairs

Bug #1:  Looking forward to this.  I think I've got a good shot at a speaking part.

Bug #2:  Really?

Bug #1:  Yeah, I know a bug that knows a bug.

Bug #2:  Oh.

Bug #1:  Hey, keep your flagella up!  Kept your day job, right?

Bug #2:  Oh yeah.  Of course.  Very full time.

Bug #1:  Yeah, what'd you do?

Bug #2:  The Kintropy house.

Bug #1:  Really?  That is full time.

Bug #3:  Kintropy?  Awesome.

[Bug #1 & Bug #2 shift to glare at Bug #3 who is lounging splayed out on his chair.  Blink.  Return to conversation.]

Bug #2:  Yeah, delivered my friend, Pink Eye, to both kids last week.

Bug #1:  Cool.

Bug #2:  Invited him back last night for Mom.  Sudden strike - no time to blend the infected eye into the Halloween costume.

Bug #1:  Very cool.

Bug #3:  Awesome, man.

[Pause.]

Bug #2:  Dad's on tea with honey tonight - sore throat.  Plus 2am nursing duties.  Probably calling in sick to work tomorrow 'cause Mom can't sleep with the eye-thing and he's getting sick, too.

Bug #1:  Sounds nasty.  Nice work.

Bug #2:  Thanks - pretty proud of it.

Bug #1:  Kintropy, heh?  You're kind of a celebrity, really.

Bug #2:  You think so?

Bug #1:  Definitely!  They're Legend.  Maybe you do have a shot at this part....

Bug #2:  You really think so?  I'd love to do t.v. pharmaceuticals!  I hear they're lucrative.

Bug #1:  Very - done two myself.

Bug #3:  That's totally tubullar, dude!

Bug #1:  What is your problem bug?

Bug #3:  Who me?

Bug #1:  Yeah you.

Bug #2:  You're seem to be just kind of hanging out.  You don't seem interested in a part. 

Bug #1:  Yeah, haven't seen you around Oregon, neither.  What kind of bug are you, anyway?

Bug #3:  Check this out!  California SuperBug.  Cool, right?

Bug #1 & #2, turning away:  Figures.

-- Dad 

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