Happy Halloween from Kintropy!

We got the rare privilage of going trick or treating with extended family.  We hope you all had as much fun as we did.

--Mom

Posted by parents at 09:39 PM | Permalink | Comments (2) | TrackBacks (0)

Every year since we've lived in Oregon, our town hosts Fright Lites.  Basically, the local fairground is adopted by Christmas-light-like ghouls and witches, slides are installed for the kids, and a haunted house or two sprouts from the grounds for adults.  Janette and I are Halloween nuts, so we take one or both kids (depending on illness, hospitalizations, etc.) along for the ride each year.

This year, all of us were well enough to go, and I thought I'd share some pictures of our adventure.

 

Posted by Dad at 08:27 PM | Permalink | Comments (0) | TrackBacks (0)

Today was one of Gabriel’s off school Mondays while Hannah had school today. So I took him along for the drop off. It used to be his preschool, so he wanted to bring his new picture book SuperHero ABC to show his old teachers. It is a fun book playing with letter sounds and creating a superhero whose abilities are all words that start with the same letter.

The sub for Hannah’s class (and one of Gabriel’s favorites) took the book and read it to the class. She did everything over the top and the kids and Gabriel laughed. Hannah kept turning to look at me, wanting to know why I wasn’t right next to her in circle.

We left after the story was read. When we came to pick up Hannah, we received a glowing report from her nurse. No melt-downs today. She tasted some of the snack. She is no longer putting toys at school in her mouth. The other little girls have been letting her know that it is not OK. The nurse also told me today that when the little girls were playing dress up, Hannah was riveted.

So that went really well with my day because I started working on her Halloween costume. Gabriel is going as Luigi from Mario brothers. So, I making a Princess Peach costume for Hannah. I got the bottom part on her today and she found it fascinating.

--Mom

Posted by parents at 10:43 PM | Permalink | Comments (1) | TrackBacks (0)

"What is that?" He pointed at Hannah's Passe Muir.

"That is a tube to help her breath."

"How does that help her breath?"

I smiled "That tube goes directly to her Trachea which is closer to the lungs then her nose and mouth so it is easier and takes less energy to breath."

"Oh, why does she need help breathing?"

I loved how logically his questions fell. "Her right diaphragm was transparent. Instead of being muscular, it was a clear membrane that didn't contract to help with breathing?"

"Will her left diaphragm be enough to help..." he started stumbling for words here.

I got the gist. "Actually, she has had surgery to repair her right diaphragm. It has been pleated like a skirt. She will out grow the trach tube."

"She had surgery? She is so little."

"Actually, she has had eight surgeries."

"How old is she?"

"Three"

By the end of Gabriel's class the boy was trying to play with Hannah and get his little sister to play with her. His little sister was more interested in Hannah's wheelchair. Hannah glowed in the attention.

She loves watching Gabriel's class and screaming when they KIA.

--Mom

Posted by parents at 09:23 PM | Permalink | Comments (3) | TrackBacks (0)

*** Disclaimer:  See below for my retail rant - my commentary for the week.  I know:  with our family life, I have a lot more to focus on.  It was a long week, though, and poor customer service & retail operational design drives me nuts after 13 years in music retail management. ***

Netflix, I am sorry.  I strayed tonight. 

Walking through Fred Meyer with my family today, I saw endcaps and face-outs filled with strong DVD new releases.  Rather than add them to our Netflix queue and wait patiently for them to arrive by mail, I impulsed.  I ran to our local Blockbuster, found three of the new releases I wanted, and headed to the counter to checkout.

Fortunately for you, Blockbuster still doesn't get it.

They purged my customer file.  Because I've been a loyal Netflix customer (well, until today's faux pas) and because I haven't rented from Blockbuster for awhile, they removed me from both their current and old customer database.  The clerk apologized briefly, pushed me to the McDonald's-grill-order-line equivalent, and handed me an application to fill out.

I admit I didn't take the high road.  I really wanted these movies:  Transformers (Gabriel and me), Surf's Up (whole family), and the new Fantastic Four (kind of whole family).  I filled out the form, grumbling all the while.

When the manager came over to process my form, he asked what the problem was.

"You purged my file:  makes it kind of inconvenient to give you money."

"How long since you rented with us?"

"Six months or more."

"That's why.  We purge customer records after six months of inactivity.  We have tens of thousands of renters; we can't keep them all on file."

Oh, okay.  So it's my fault.  I'm part of Blockbuster's acceptable attrition.  The manager's version of customer service was to explain why my behavior was incompatible with Blockbuster's system, not try to win me over as a returning customer.

My brother and I managed retail stores and operations for over a decade each.  My first non-family retail job was as a video and music clerk at The Wherehouse.  I walked the floors.  I knew all our regular customers.  We shared movie and music tips with each other.  They came in and asked for my recommendations.  I sold lots of rentals and music, helping people find stuff they'd be interested in.  A kid saw me in a pizza place once and yelled out, "There's the Wherehouse Man!"  No joke.

Based on that experience, this is not how you win over a customer.  I self-identified myself as a Netflix subscriber returning to rent from Blockbuster on a trial basis for one night.  Having put a customer through a similar re-application, I would have

1. Apologized for the inconvenience
2. Said thank you for filling out the application and for returning to Blockbuster
3. Offered a mid-week only coupon for a free movie for the trouble (a customer service smile + guaranteed return business that will probably develop into a nice rental stream)

But, no, the computer system kicks people out.  Attrition is okay.

Blockbuster:  a couple of clues.  You can't afford to lose returning customers.  Computer memory is cheap.  A more sophisticated profiling system would have identified me as a 4+ DVD renter a week (that would pay for a pretty nice computer upgrade BTW).  Your systems may not retain rental history over x period, but you should hang on to every customer like your retail life depended on it.  According to the Trades, it does.  While you're at, walk the floor & know your product.  Desk jockeys can take in money, but don't generate any.

So, yes, I was still weak.  I rented the movies, but Blockbuster hasn't won my allegance.  We'll shelve the cards on returning the movies and update our Netflix queue. 

It would be great, Netflix, if you could figure out a way to scratch the impulse rental itch, though.  Maybe take a page from the RedBox book and set up stations for subscribers at every FedEx/Kinkos (shipping + hot title rentals on the spot)?   Just an idea.

In the meantime, we'll pop our finished movies back in the mail & receive our next items quietly (and pretty quickly, I might add - just not same day).  

Thanks for listening.  Keep up the good work, Netflix.

-- Dad

Posted by Dad at 05:19 PM | Permalink | Comments (0) | TrackBacks (0)

Do you hear that laughter?  That's my parents.

It's easier for me to hear them because they only live a few blocks away, but I'm betting you can hear them better when I describe the following:

Both of our kids occassionally break The Law.  By that, I mean they disobey Mom or me.

For Gabriel lately, this means getting out of bed after 9pm.  Last night, was no exception.  Janette relayed the following to me:

"Mom, can I cuddle with you?"  (time check:  way past 9pm)

"You're supposed to be in bed."

"I know.  I just want to cuddle though."  [insert velvet-painting-wide eyes, hint of tear]

"You'll lose video games tomorrow."

"Just don't tell Dad then."

"OK, you just lost video games."

We've been yielding our newest club, the loss of privleges including video games and tv, for a few weeks:  our stay-in-bed campaign.  Gabriel has lost video games about half the nights last week after a good, three-days of initial compliance.  He alternates between tears of mourning, legalistic loophole searches in the punishment text, logic puzzles ("I've been good, huh?  So..."), and a variety of other tactics.

Hannah, meanwhile, has strayed as well.  She divides and conquers.  If she bites Mom, she cuddles with Dad.  If she throws a fit with Dad, she needs some Mom hugs.  As medical issues subside, we're working with those supporting her at home and school (including us) to call her consistently on behavioral issues.  Don't throw stuff!  Don't bite!  Yes, you need to stay at the table until everyone's done eating! 

For awhile, Hannah has behaved like she has had a get-out-of-jail-free card.  As Daddy's Little Girl, she's certainly had one with me.  But we're all working to compare notes & call her on stuff consistently.  Danger:  three-year-old testing the borders.  Testing.  Testing.

In the end, I'm sure we'll all survive & thrive.  In the meantime, though, we parents will prepare new rules & consequences; our son, the budding attorney, will explore his opening arguments; our daughter will constantly test the borders and chuckle at our attempts to police them.

-- Dad 

Posted by Dad at 04:15 AM | Permalink | Comments (3) | TrackBacks (0)

"She is my child," Charity objected.

"She was," Forthill corrected her, "if only for a time. Children are a precious gift, but they belong to no one but themselves. They are only lent us a little while." The priest folded his arms over his chest and leaned against the doorway." (Quote from Jim Butcher in his book Proven Guilty, page 416, 7^th paragraph)

I always find things in fiction that are full of truth. I was just finishing the book Proven Guilty. This quote was near the end and it made me smile. My own personnel philosophy as a parent is that my children are who they are, they are responsible for their behavior. My job is to help them find their talents and what there passions are and help them move in those directions. I don’t get to dictate who they are; I just get to let them know how to behave in society politely and pleasantly.

It also reminds me of the quickness of childhood. I try to hang onto moments. If Gabriel asks to cuddle I try to stop what I’m doing and give him that moment. I know eventually, I’ll have a teenager who will want me to give him space.

When Hannah wants me to sing another song. I remind myself that someday, another singer will make her cheer, and she will probably be embarrassed as if I break out in song.

--Mom

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

The other day I was walking across a parking lot with Gabriel, multicolor leaves swirled around us and blew by. He looked at me "Mommy, why do leaves do that?"

"Do what?"

"Why do the leaves fly around like that."

"It's fall Gabriel that is what they do."

"Why?"

My mind ran toward the scientific stuff. Resources are limited in the winter, it easier for the tree to centralize it's body. I didn't think that would fly for an answer. "The leaves get bored hanging around and go on trips."

"What?"

"They want to see the world Gabriel. They are free to fly the countryside and see the world." My mind filled with images leaves with cameras trying to manuver to Multnoma Falls to do a free fall.

He took the answer and asked again a few days later. I told him the same thing.

--Mom

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

"Don't Sit So Close To Me!"

--Mom

Posted by parents at 09:56 PM | Permalink | Comments (0) | TrackBacks (0)

Hannah has been making huge developmental gains over the past few months, and we're all celebrating them.  Today, she was walking around the house with support, but not tuckering out nearly as quickly (impressive given that she's a little under the weather).

So this picture from last week of Hannah proudly wearing her "Future Rose Festival Princess" shirt seemed appropriate.  Plus I'm taking care of the Princess for the next ten or twelve hours.  On bended knee, of course.

-- Dad 

Posted by Dad at 02:30 AM | Permalink | Comments (0) | TrackBacks (0)

For we Oregon voters with mail-in ballots freshly in hand, I recommend checking out City Club of Portland's Measure 50 analysis and recommendation.  This very clear and thorough document does a great job of dispelling the myths surrounding this issue.

In addition, if you didn't catch it on KOPB, City Club sponsored a Measure 50 debate (link to mp3).  Representitive Sara Gelser did a great job of laying out the sponsors' case for Measure 50, and, to be fair, J.L. Wilson came well-prepared to present the "No" position.  I enjoyed high school debate, and I thought both participants did well.

Speaking of Rep. Sara Gelser, she had a fantastic freshman year in the Oregon Legislature.  Kudos to her important legislative effort on behalf of families and individuals that experience disabilities.  Passage of HB 2406 - a bill that opens up home nursing support for kids beyond those that are technological dependent (our matching criteria in MFCU) - was a huge win for our community. 

This will be a huge help to some of the families I know.  Having support at home often allows families to stay together at home:  an important win for everyone.  See her introduction of the bill on the House floor. 

Thanks for all your work, Rep. Gelser!

-- Dad 

Posted by Dad at 01:46 AM | Permalink | Comments (2) | TrackBacks (0)

When Janette and I switched nursing shifts at 2 a.m. (and she headed off to the Big Bed for real sleep), I mentioned she should still go and paint pottery tomorrow.  Just because Gabriel's not going to school doesn't mean she can't go and paint for a couple of hours....

Now that I've read her blog, that might be a really good idea:  a little pick me up.  Should be interesting with both Sickies at home on my own, though.  I'd agree with Janette that this is not necessarily the most restful (my goal) and/or social & busy (her goal) weekend that we (separately) were envisioning.

Tick tock - we count down to Monday anyway. 

-- Dad 

Posted by Dad at 01:08 AM | Permalink | Comments (0) | TrackBacks (0)

I’m having one of those weekends where going to bed and staying there sounds like a great idea.

I was looking forward to this weekend. I had planned a game night with our neighbors a month ago. I had organized an outing to meet Gabriel’s new friend at school and family on Saturday. The kids’ godmothers were coming to town and the family was getting together for a birthday party for my father-in-law.

Gabriel woke up with pink eye on Friday.

I got him into the clinic and the nurse practitioner agreed and subscribed something. She agreed to write up a prescription for Hannah who was not exhibiting signs of pink eye yet, with the understanding that I wouldn’t administer it unless she showed signs of pink eye. No problem, LOL, I try to keep medication to a minimum. I rarely succeed these days. Since we in the clinic and it was only pink eye after all. I got both kids their flu shots. I went ahead and filled both subscriptions it is only a matter of time after all.

I hadn’t realized how much I was looking forward to those social engagements, but I was and I’m feeling sad. I keep reminding myself there will be other days.

I know it is still bothering me though. Little things are bugging me. Ok, some are big. Tonight is a no nurse night and tomorrow is Gabriel’s religious school. It’s a half-hour away so we need to get up early. We put Gabriel to bed at 8:00pm. He didn’t get to sleep until 11:45 and this was made apparent to me as he kept coming into Hannah’s room every five to ten minutes to ask for a hug. I was trying to settle Hannah down for sleep and for some reason his constant interruptions were not helpful.

At one point he claimed to be nauseous. At this point he doesn’t get to play any video games tomorrow, he has no TV privileges and I decided if he is nauseous there is no school for him tomorrow (He has been on medication for pink eye for 24 hours he is supposedly no longer contagious) No school tomorrow means I won’t get a chance to go paint at the pottery shop either.

I just settled Hannah to sleep and she has a rash that looks suspiciously like chicken pox.

I’m not going to be going anywhere for a while. Ok, I finished the poor me and letting go. Deep breath in and deep breath out. These minor annoyances will pass soon. Right? Hmmm my eyes are starting to itch.

--Mom

P.S. I had a Funny Dream last night. I dreamt we were living with Martha Stewart and I had to teach her how to suction a trach.

Posted by parents at 11:14 PM | Permalink | Comments (2) | TrackBacks (0)

When I was growing up I use to dream about having a house. What I dreamed about was one filled with books. I always wanted to live in a library. It seems I’ve been making that happen.

We were tagged by Jodi at Reimer Reason so here it goes:

Total Number of books:

LOL, This must be a joke. There is no way I can keep track of that.

Robert recommended this to me. It was sensational. It is a murder mystery set in a time where no one really dies but their consciousness is uploaded into a computer net. This allows for affordable transport between cities, continents and planets because there just needs a to be a body (or sleeve) waiting at the other end of the cable to upload into.

Current Book I’m Reading (I added this category)

Proven Guilty By Jim Butcher

It is a Dresden File book I started watching the show on USA last season and admit I’m craving more information on the character.

Magic Lost, Trouble Found by Lisa Shearin (Looks fun haven’t read this author before)

Hexwood by Diane Wynne Jones (Cover text hooked me: "All I asked you for a Role-playing game. You never warned me I’d be pitched into it for real!")

Stormbreaker by Anthony Horowitz (The preview for this as a movie looked fascinating plus I’m always looking for reads to recommend to future older Gabriel)

Well of Lost Plots by Jasper Fforde: This books character goes into the subconscious of writers minds. There is a support group for the characters of Wuthering Heights by Emily Bronte. The amount of levels going on in this books are mind numbing.

Jennifer Government by Maxx Barry: What the world could look like when dominated by big business such as Matel, Nike and Mastercard. It is scary and action packed.

Shape Changer’s Wife by Sharon Shinn: This book really explores the ideas of what is kind and what is cruel. It also goes into what makes a person human. It explores the idea of alien cultures through the use of characters who have been born other creatures and forced into a human shape.

Assassin's Apprentice by Robin Hobb: Explores what is morality. Well crafted story of a boy growing up with interesting role models.

Dragonsong by Anne McCaffrey: A talented girl finds her way in a world full of opposition. It’s a story of survival and strength of character. I also love to visit the world of Pern and Menolly is my favorite character to visit. This is my escape book.

----------------------------------------------------------------------------------------

Whew! Looking up all the links took the most time especially with the little ones asking me for things in the middle.  I thought I would leave you with a picture of my to be read pile.

Posted by parents at 08:43 PM | Permalink | Comments (2) | TrackBacks (0)

Mom and Gabriel went out shopping today.  Gabriel got an old Gamecube Luigi game; Mom bought me a Wii download card.  So tonight I shopped the Wii classic games.  We now have the NES Donkey Kong, original Mario Brothers, Legend of Kage, and Elevator Action. 

Gabriel was still mesmorized by the classic-pixelated games, but he wanted me to play them so he could watch.  Hannah rolled next to me, watched for a little bit, then went (rather quietly) to sleep next to me.  

I think Gabriel's favorite was Elevator Action.  For those that don't recall, you get to play a secret agent stuck in a skyscraper, opening doors and avoiding (or shooting) the bad guy spies.  All to cute, bouncy monophonic music.  Cool stuff.

Off to ebay to find some more Gamecube titles.  I know:  sad the things that motivate us sometimes.... 

-- Dad 

Posted by Dad at 09:22 PM | Permalink | Comments (2) | TrackBacks (0)

Tonight, Robert and I sat down on the couch together to watch one of our favorite shows. (Pushing Daisies) Hannah who had been napping on the floor woke up. Robert moved her to the couch and sat her between us. She snuggled up to me then looked into my face. "I go out !" she said it very clearly.

"You want to go out Hannah?"

"Yeah!"

--Mom

Posted by parents at 09:53 PM | Permalink | Comments (1) | TrackBacks (0)

You often see me talking about blog carnivals here.  It's a great way to get out and meet new bloggers (virtually, of course).  Here are several that we participate in, and I encourage you to check them out:

Carnival of Family Life - a wide variety of parenting topics (even budgeting tips, etc. like those offered over at my very good friend's site:  Keeper of the Pennies)

Disability Blog Carnival - mentioned in a previous entry, but always a good read.  Plus it's the 1 year anniversary version this round.

Carnival of Satire - trying this one out for the first time and enjoying the ride.

EDIT 10/17/07:  Sorry, left out Change of Shift:  one of regular reads and comment spots.  From, about, and for nurses and those that interact with them (like our family)  

That's it for tonight.  'Night all.  Maybe Gabriel's asleep by now?

-- Dad 

Posted by Dad at 10:07 PM | Permalink | Comments (0) | TrackBacks (0)

Last week, I turned on the radio.  The KOPB Fall Fundraiser had started.  I listened to the hosts banter back and forth, encouraging people to call and pledge.  I waited patiently for the news to return. 

At the top of the hour, I was rewarded.  Serious Broadcaster relayed the news, covering Iraq, Iran, domestic politics:  all things NPR.  The local news person gave the Oregon headlines.  And then they returned.  The Fall Fundraiser.  Costs $20,000 a week for an NPR show.  Please call.  Give anything.  Give everything.  Just call.

The radio's lit face grinned at me.  Its dials stared at me.  C'mon, it said, you can contribute more.  Yes, you paid up during the last fund drive, but if you pay more now, they'll go away... eventually.  Phones bbrringed endlessly from its speakers: an erratic, analog heartbeat that proved how destitute the patient was (analog phones?  all they can afford are analog phones?).

That was last week.  For the price of an expensive cup of coffee, you can support.... 

I bided my time, each day testing my luck, seeing if I could sneak up on the radio and enjoy content without pledge breaks.  Each day, I was defeated.

Today, Tuesday, the Fundraiser continued.  I did what I had to do; I pulled the plug on the radio.  Its grin faded slowly to a black grimace.  I, an NPR and KOPB supporter, had silenced the pledge drive.  I needed to hide my crime.

Having no floorboards under which to hide the radio, I could only turn away from it, mentally discard it.  At first, I was successful, but my crime ate away at me.  My hunger for news expanded in my stomach.  Softly at first, then louder, I could hear the ringing - that analog bell ringing!  Ringing and demanding!

I'm sure everyone around me can hear it ringing.  Yes, I did it!  I turned off the radio.  Won't the ringing stop?  Please... pledge and make it stop!

-- Dad 

Posted by Dad at 09:24 PM | Permalink | Comments (0) | TrackBacks (0)

Jodi over at Reimer Reason tagged Janette and me for some book blogging, so here's my version, and I'm sure my bookaholic-wife will follow closely behind :-)

Total Number of Books

Eeek!  Ever?  I started reading early.  When I went to kindergarten and saw the library, I was in heaven.  I probably chewed through half a dozen books a month at minimum.  Slowed down considerably as I joined the working world.  Music traded places with books off-and-on as my passion, but I'd say I burned through several stacks of books so far in my lifetime.

Last Book Read

Sandworms of Dune by Brian Herbert and Kevin J. Anderson.  Dune was one of my all-time favorite series as a kid.  I read and re-read the first book 4-5 times (after getting past the first 50 or so pages after several first attempts).  The Sci-Fi Channel series based on Dune was pretty good; Lynch's film, in the long version, interesting.  The books still beat both, and the new books read well and are a little easier to get into.

Last Book Bought

We buy a ton of books regularly.  The last two I bought were magazines, though:  Highlights for Children (Halloween edition) and the newest Star Wars Legend comic for, er, Gabriel?  For Hannah, I bought a new DVD:  That Baby.  No image at Amazon.com yet, but you can see it more clearly here:  by the same people that brought us Oy!Baby 1 & 2.  Really - Hannah's favorites.

Five Meaningful Books

Hmmm... for me they would probably be

Something Wicked This Way Comes by Ray Bradbury.  I met Ray Bradbury when I was younger at a book signing; I heard him give a speech soon after.  He is an amazing storyteller.  This book, in particular, reads like a roller-coaster.  There are a few pages of monologue in the library with Mr. Dark, but outside of that, the book is almost entirely built from short sentences.  It's an amazing read, but I also kind of tore it apart trying to figure out how it "worked."  This book was important to learning how to improve my writing (which doesn't suffer from short sentences, I'm afraid).

Edgar Allen Poe - any short story collection.  Another early favorite & influence.  Yes, I have written many morbid horror stories.  Janette tries not to read them.  Especially when we're alone.  In a cabin.  In the woods.  Seriously - Janette will confirm.

This Is the Way The World Ends - James Morrow.  This is my first book-buying memory from the year I lived in San Francisco.  Great used bookstore that stayed open until midnight (but closed permanently not long after I left SF - sniff).  Great book, too.  What do you have if you mix Alice in Wonderland and mutually assured destruction?  This book.

The Sleep Book - Dr. Seuss.  This is one of the more memorable ones we forced my dad to read to us as kids.  When he got to the Moose Juice part, he had to read the two page spread without taking a breath.  Sadly, Gabriel is not a big Dr. Seuss fan.  Hannah is, though.  Provided she has my undivided attention, she's happy to listen to me read or talk or sing.

My 1986-87 high school yearbook.  Our theme was Born To Be Wild, and I was the editor-in-chief.  With the help of a good friend & co-editor, I ruled with an iron fist.  Well, actually, kind of, yeah.  I remember some staff circulating a petition (probably about actually having to do work during zero period).  My good friend intercepted & tore it up.  Ah, high school was fun.

Now to tag...

Terry, want to give this a shot? 

Posted by Dad at 09:27 PM | Permalink | Comments (1) | TrackBacks (0)

Sunday, I took Gabriel to his religious school class. Like Robert I was early. Gabriel climbed the rails as we waited for a way in.

I came across the same caustic teacher. "You can’t leave him we are only here early to set up."

I smiled a practiced oblivious smile and said "Of, course."

She disappeared off around the corner. I followed Gabriel through the maze of the Synagogue looking for his class. He couldn’t remember where it was. So we wondered down the halls. We were a half-hour early so I didn’t worry. We eventually came across some other teachers who directed us to the Kindergarten area. It was deserted. I turned on the light and suggested we take the chairs down. We did this. No one showed up.

The caustic teacher from the door stuck her head in from the classroom next door. "You might as well come in here." It was her classroom next door. She was in a pleasant mood and talking to her room assistant. She was talking about their plan for the lesson and how she hoped the VCR and TV would work. It wasn’t working. I casually glanced at the back.

"The VCR is not hooked to the TV."

She looked at me puzzled.

"I can do it." I said with a smile. She backed away. "Do you want me to try and hook it up?"

She nodded.

I hooked the cables between the TV and the VCR together. The show came on with a roaring thunder. Kids had suddenly appeared from nowhere. Tons of parents dropping off their kids. Gabriel’s teacher had not arrived yet. I looked back at the caustic teacher. "Do I leave now? I come back at 11:00 right?"

She wrung her hands "If you want to meet us in the Sanctuary that will be at 11:25?"

I smiled and thought 11:00 it is. I hugged Gabriel and told him I see him in about two hours. He told me to go meet new friends.

Off I went, I had a mission Robert on his recon missions had come back with reports of a ceramic painting place by the Noah Bagels. That was my goal. I followed the directions to Noah’s and found the place it was called Paint Pots. It opened at 10:00. So I started at Noah’s where I bought a half dozen super onion bagels for Robert, two sugar cookies, a box of taxi cookies and one toasted sun-dried tomato with cream cheese to eat there.

I still finished a half-hour before the shop I wanted opened so I walked the center and returned to my car where I read the novel I just started.

At precisely 10:00 the owner arrived and I walked in. I listened to her directions and grabbed the biggest flattest surface I could find. It was a large platter. I sat down and started to draw. It started out Esher-ish then became more Salvador Dali like. I didn’t finish coloring it so I told the owner I would be back next week. Just sitting there with nothing to do but paint or draw whatever I felt like was heaven. I even waited till 11:10 to leave the shop and head back to the Synagogue. I still made it before they went to the Sanctuary.

--Mom

Posted by parents at 09:02 PM | Permalink | Comments (1) | TrackBacks (0)

Commentary Disclaimer:  The following commentary reflects my own views on Measure 50 only.  If you are an Oregon voter, I encourage you to research the Measure yourself with the help of the offical Voter's Pamphlet and text of Senate Bill 3

Opponents to Measure 50, like the Oregonian's David Reinhard and Big Tobacco, like to point out the following:

• Yes, smoking is bad BUT
• More taxes for cigarettes suppress cigarette use
• Less cigarette use means less tax revenue
• Therefore, one should not support Measure 50, the Healthy Kids initiative, because revenue will dry up and come out of your, general taxpayer's, pocket

Additional arguments run something like a) most money will not go to the Healthy Kids program anyway, b) amends the perfect as-is Oregon Constitution, c) unfair to the smoking-addicted poor.

Alice, your mirror is ready.  Wonderland is waiting.  All you have to do is close your eyes, walk through the smokey glass, and pop out on the other side where the caterpillar puffs freely and health care is unnecessary (unless, of course, the Queen of Hearts comes looking for your head).

Back to reality:  let's start with taxes.  According to the Federation of Tax Administrators, Oregon's last cigarette tax change occurred in January, 2004; we reduced the cigarette tax per pack by ten cents to $1.18.  How much does the cigarette tax add to a pack of cigarettes in Vancouver, Washington?  $2.025 (7/1/2005).  Matching our northern neighbor doesn't seem completely out of line, particularly if it increases revenue in a state overly-dependent on a single revenue source:  income taxes.

But will Measure 50, if passed, reduce smoking rates and increase revenues?  Using data from a California cigarette tax price increase in 1999, Dr. Hai-Yen Sung summarized his team's findings as follows:

"Over the period 1999 through 2002, the combined effect was to reduce cigarette consumption by 2.4 packs per capita per quarter (1.3 billion packs total over the 4-year period) and to raise state tax revenues by $2.1 billion.... 

Conclusions. A major increase in price through taxation and the MSA provided a strong economic disincentive for smokers in a state with a low smoking prevalence. This effect could be reinforced if part of the MSA payments were devoted to tobacco control programs."  (Hai-Yen Sung, PhD, "A Major State Tobacco Tax Increase, the Master Settlement Agreement, and Cigarette Consumption: The California Experience"; American Journal of Public Health, vol 95.6, June 2005.

I wouldn't claim that Oregon is a state with a "low smoking prevalence."  Anyone who has wandered through Pioneer Square or our bars can take issue with that.  I do think, however, the report above and data from the Campaign for Tobacco-Free Kids successfully links increases in cigarette taxes/prices to a decrease in smoking frequency (at minimum) and an increase in revenue.

So now we have some new money.  Is it true that the Healthy Kids program doesn't receive every penny from Measure 50?  On this point, opponents are correct.  The Oregon Legislative Fiscal Office analysis shows that the estimated 2007-09 extra tax revenue would be $194.5 M.  Of that, the Oregon Healthy Kids Program (OHKP) would receive $133.1 M; Oregon's Tobacco Use Reduction Account, $19.5 M; the Rural Health Revolving Account, $2.1M; Safety Net Clinics, $5.6M.  In the 2010-11 period, OHKP will receive 90% of the funding in total.

Check my math.  I'll wait. 

I'll bet you found a gap of $34.2 M for 2007-09.  This is part of approximately $68 M left aside from 2007-2011 to "help safeguard the program from variations in caseloads, medical inflation, and modest declines in tobacco revenue."  Wow, the Legislators thought ahead and built in a backup plan!  This represents a giant leap forward for the give-everyone-their-money-back Kicker state. 

The pie charts on t.v., of course, don't break the data out the same way.  They fragment the OHKP, essentially arguing that expanding the Oregon Health Plan (OHP) Standard (severely contracted for years), providing partially-subsidized, private insurance options for kids living between the 150% to 300% Federal Poverty Level, supporting rural health initiatives, funding safety net clinics, and administrative costs for the OHKP have nothing to do with OHKP.  Seems like kids (or their parents on OHP Standard - see here for stats on parents with coverage and its impact on kids) might need a private insurance option, live outside Portland metro, and use safety net clinics, especially those located in and around schools. 

As far as amending the sacrosanct Oregon Consistitution? Janie Har of The Oregonian reports that we've already done that 240 times.  Given that one of those amendments was to protect the right to sell alcohol by the glass (1952), I think the Constitution will survive if we pass Measure 50.

Lastly, it is true that higher cigarette taxes will impact the poor disproportionally.  Given that

"Tobacco use cost Oregonians $1.8 billion in 2000. The direct cost to the healthcare system alone in Oregon was nearly $900 million, and every pack of cigarettes sold costs our economy $7.18—$3.45 in medical costs and $3.73 in lost productivity due to premature death and disease." Oregon Statewide Tobacco Control Plan, 2005-2010

I would hope that additional outreach can be accomplished by Oregon's Tobacco Use Reduction Account programs in all communities and economic levels.  Imagine offsetting the negative impact of smoking's health care costs by insuring more kids and increasing anti-smoking programs.  I think we can do more help than harm by raising the cigarette tax a mere $0.845 a pack, don't you?

-- Dad 

Edited for clarity on OHP Standard 10/21/07 (Dad) 

Posted by Dad at 05:25 PM | Permalink | Comments (2) | TrackBacks (0)

 The other day Gabriel and I were watching Animaniacs. He looked at me very seriously and asked "Mommy, why don’t the Animaniacs use self control?"

I laughed. It was a great question and showed he has been listening. One of the things Robert and I keep repeatedly asking him when his conduct has been unbecoming is always "And who is responsible for your body and behavior?" So, I thought about it. "It is a great question Gabriel, I think it is because the Animaniacs don’t have parents to tell them to think about it." I’m just lucky he didn’t ask me where their parents were.

--Mom

Posted by parents at 04:36 AM | Permalink | Comments (0) | TrackBacks (0)

Penny in Disability Carnival #24 brings together some fantastic reflections on life's milestones.  I'm reading through the Carnival this morning while Hannah sleeps, and this collection has some poignant (and often funny) reflections.  A couple of my favorites so far include:

"Milemarkers just give a number, a neutral number. They don’t tell you if you are on the road to New York or the road to California and they won’t inform you to what road is best for you." - Growing Up With a Disability, Milemarker Mania

"I surrendered to the unknown as I handed the reins over to my dear Emma, acknowledging that she could be the only driver of this cab. I would guide, I would assist, I would help, but I would never drive. It was my time to trust and enjoy the ride." - Lovely and Amazing, My Arch-Nemesis:  The Milestone Chart

In our own world, we are regularly celebrating milestones.  Gabriel had a friend over today for several hours (a social milestone).  Hannah, after attending several classes at her new preschool (also Gabriel's old preschool), has decided it's time to sit up.  She can move to a sitting position, unassisted, whenever she wants, and she does it regularly now.  Still working more on the walking, but I can see that skill developing, too.

G-tube, ventilators, humidifiers, and other tethers beware!  Hannah is getting ready to go mobile!

-- Dad 

Posted by Dad at 02:53 AM | Permalink | Comments (1) | TrackBacks (0)

Yesterday, Gabriel looked at the gingerbread haunted house kit Robert bought over a week ago and asked me "Can we do the Halloween Cake now?" Robert had bought enticing kit right around my birthday, I knew we were going to have a cake in the house so I have been detouring Gabriel’s requests for over a week.

He finally picked the perfect time. Hannah had just settled for a nap and it was a no school day. He ended up covered in black and orange frosting. I had fun and he focused longer on it then most projects I attempt with him.

I made him wait till after dinner to get a piece to eat though.

--Mom

Posted by parents at 09:32 PM | Permalink | Comments (0) | TrackBacks (0)

This weekend, Janette and I have a wedding to attend.  The arrangements have been made:  a nurse for Hannah, Bubbie & Zadie for Gabriel.  Janette and I have several hours where we can pretend to be Real Grown Ups.

It's funny how these types of events go in phases.  When I was thirteen, it was the year of friends' Bar Mitzvahs.  In our twenties, Janette and I did the wedding circuit, watching friends and family tie the knot.  I even DJ'd weddings for a few years (yes, late 80s - mid 90s:  I never want to hear Whitney's version of "I Will Always Love You" ever again).

And in our thirties?  It's screaming kids and video games at the local Smells Like a Gym pizza parlor or, worse, Chucky Cheese. 

So it'll be great to see my friends from work get married, and it will be really cool to have a date with my wife.   Looking forward to the weekend.

-- Dad 

Posted by Dad at 08:10 PM | Permalink | Comments (2) | TrackBacks (0)

I took over for Hannah's care so Robert could have his morning time. I was sleepy. I found some Disney Channel shows and curled up on floor next to her. Her medport on her G-tube opened. It spilled formula all over. I dragged myself up and went to wet a wash cloth. I changed her clothes and wiped her down and changed the blanket under her. (Hannah always has a blanket under her; she breaks out in hives from the carpet.)

I get her resettled and curled up next to her. She swirled the mucous in her trach. I suctioned her. The phone rang.  She swirled the mucous in her trach. I suctioned her again. Ten minutes before the day nurse is suppose to come, I fell asleep.

When the nurse arrived, I dragged myself up again. I talked myself into getting to Gabriel's school. Wednesday is my volunteer day.

I quickly freshened up to give the day nurse a report and dropped the bomb that we have a Doctor appointment for Hannah at 11:00 am.  We should try to leave by 10:00 am since it is in downtown Portland, I said.

I packed a workman's clip on pocket with extra school supplies: the kids always need something. I headed to Gabriel's class (which is already in full swing). I heard the directions wrong and started the kids on projects in the wrong order and with the wrong techniques. As I am about to leave, the fire alarm goes off. Not knowing all about proceedure, I stuck around to make sure it was OK for me to leave the premises.

I got home and started loading the car for the appointment. I think I grabbed a chewy bar. We loaded up Hannah and made it to the Hospital with 10 minutes to spare.  We ran into a nurse who used to work in our home before she re-expanded her career to the hospital. We talked for three minutes, and we made it to the office 3 minutes before the scheduled appointment. I chatted with a few mommies in the waiting room (we were comparing doctors' notes). I think we got out of the appointment by 11:30.

We packed the car back up and headed home. I then realized the van was in it's lowest quarter on the gas tank. So I got off an earlier freeway exit, and, while I was waiting for the traffic light to turn green, my gas lite came on and beeped. Gee, I didn't know it did that. I made it to the gas station and home.

Robert was there having lunch. I had planned to unload Hannah, grab a snack, then head back out. I had to buy a wedding gift for this weekend. It was my last chance this week to do it, and I needed to pick up Gabriel at the bus stop at 2:20pm.

I go check online the registries of the places where the happy couple are supposed to be registered. Nothing comes up. This takes 20 minutes. I realize I'm going to be winging it. When I come back to the kitchen, Robert let's me know we have a couple of phone messages. I check them. One is my sister in-law, newly moved here, and I didn't return her call the day before. I'm waiting to take Robert back to work, so I call my sister in-law. I tell her what I'm doing, and even though I know it's not particularly exciting, I ask her if she wants to come along. She does. Logistically, it works well. She is at a Max stop, one away from Roberts work, so we worked out that she would take the Max to the stop by Robert's work. I droped off Robert and pick up my sister in-law.

With her, I get to have a conversation that doesn't involve superheros and ninjas. I then get to browse in the store. Wow, what a treat.

We make it back home with twenty minutes to spare before picking Gabriel up.

After that, I receive report from the day nurse. I work on the dishes in between TV and over enthusiastic brother patrol. I then start dinner. I remember another call I need to make.

Ok, I think you get the point. I'm going to curl up with a book and go to sleep now.

--Mom

Posted by parents at 09:34 PM | Permalink | Comments (1) | TrackBacks (0)

Hey this is a small blog tonight.  I got back from a PTA meeting.  Took care of sick Hannah and reinserted Gabriel into bed 12 times.  I'm going to go watch Reaper the sitcom.  Hopefully I'll have something more interesting to type about tomorrow.

--Mom

Posted by parents at 09:30 PM | Permalink | Comments (1) | TrackBacks (0)

Kathryn over at Ryn Tale's helped relay an article about a version of the "Ashley Treatment" being considered in the UK.  Take a read both of Kathryn's reaction and the original article.

Here is the comment I left on a petition the original article linked to.  Share your thoughts/comments when you have time: 

"For my part,  voluntary surgery and treatments aren't voluntary if you don't consent. 

My three-and-a-half year old daughter recently had her left ovary removed due to a tumor.  The doctor suggested we might review the idea of removing the other at another time and started discussing the pluses and minuses (the pluses included no menstruation:  apparently a plus if you experience a cognitive disability).

Everyone underestimates our daughter's wants and level of understanding (including us sometimes).  Unless medically necessary, we would never consider such a procedure.  She deserves the right to live an independent and full life.  It's my job, as her parent, to protect that right, not to remove it."

I could vent more - much more.  In Hannah's case, we trust and like this doctor.  I think he was trying to give us a positive way to view removing the other ovary if it came to that down the road for truly medical reasons.  But I still had to stop him and let him know, emphatically, that we'd try to do everything else first to preserve Hannah's options/choices as she grows older.

He understood, but I'm still glad we had The Talk.

-- Dad 

Posted by Dad at 09:39 PM | Permalink | Comments (2) | TrackBacks (0)

Yesterday, after I posted my blog I started exploring further the Passy Muir website and found they have a stuffed dinosaur with a Passy Muir on it. They call it Toby Tracheasaurus. We must order one. It is funny because I have been thinking about Trache-ing Hannah’s Elmo doll he is already wearing her old AFO’s she outgrew.

I talked it over with two of her nurses this morning during the change of shift. (One of a rare day and night shifts back to back). One started talking that she was concerned Elmo would start leaking stuffing while the other one who told me about a family who did that to a plastic doll and also put in a G-tube in it.

Being who I am, I have this let’s call it interesting sense of humor. I started talking about what would happen if we suctioned Elmo’s trache. I got both nurses laughing and Hannah shaking her head at me.

--Mom

Posted by parents at 09:33 PM | Permalink | Comments (0) | TrackBacks (0)

Ok, wish me luck:  I am heading back into the gym.

The gym and I have a dislike/hate long distance relationship.  Up-close, though, I love the workout and personal time.  For a variety of reasons and excuses, the gym and I have been dating other people, ah, exclusively.  Having visited the doctor and climbed The Scale of Record, I feel obligated to get reaquianted with the gym.  My waistline will thank me, I hope.

-- Dad 

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

The newest Carnival of Family Life is up at My Wealth Builder.  Lots of great blogs to read through plus a neat poll feature to track blog popularity (hint:  ours is at the bottom of the pa