Kintropy In Action

This week it was announced that a museum supporting the proponents of the theory of Universe Creation as depicted in the chapter of Genesis in the Jewish - Christian Bible has opened. It is located in Petersburg Kentucky and called Creation Museum.

When I heard about this I was appalled. In my attempts to be more socially supportive I’ve been examining these emotions. Why, did this upset me so much?

Ok, please hear me out.

My knee jerk reaction, and this is going to upset some people, is well it is not true. Creation as depicted in the bible is not true. It was an idea made up by people with limited understanding of their world and the universe. It is some beautiful images rhetorically speaking but contradicts itself within paragraphs as if written by two different authors. It was very hip with the time period it was created in and with the religions in play of the same period. Personally I wouldn’t take the retranslated works of over 4,000 years ago as a first person account.

So OK, I don’t believe in Creationism, fine why do I care if there is museum out there for the people who do.

That is a great question. I guess my personal understanding of what a museum is, is at fault here. I’ve always seen museums as places to learn true things. Such as well if you mix vinegar and baking soda it will fiz. Here are a couple theories behind why this works. Henry the eighth had several wives; how this happened is documented in writings from the time but, those documents can be biased by the writers.

At least in the Science museum they call things theories and are opened up for change. LOL, there is no temple mount saying this is how it is and can’t be altered. They also announce right on the door where the ideas are coming from. It is the Scientific Natural History Museum. Where as a Hindu or Buddhist walking into the Creation museum won’t find their Creation stories.

Fine, if the Christians want their Euro-centric Adam and Eve with disregard for carbon-dating dinosaurs fine it is America. But the next doctor operating on my daughter better know we all related to the pig and their heart valves can be handy in a pinch.

--Mom

Posted by parents at 11:07 PM | Permalink | Comments (1) | TrackBacks (0)

After our long ordeal today at the dermatologist office, (See Robert’s Dr. Purgatory Blog), we got home around 7:00 PM. Gabriel and Hannah were troopers. We were already stopping at McDonalds for dinner and Gabriel was trying to maneuver for a cookie from Starbucks. A cookie sounded good but not just any cookie, so I offered to make cookies when we get home.

Believe it or not baking relaxes me.

So after eating up my dinner and clearing plates, I turned on Hannah’s favorite nightly show. Jeopardy and went to work on the batter. Gabriel was playing acting the surfing episode from Backyardingans with some of his own radical moves. As I stir the batter it becomes the Great Race Episode from the same show. I start the cookies baking and then go and finish hand tube feeding Hannah as she watches Jeopardy and Gabriel gets me to participate in the race.

The buzzer goes off periodically and I go empty the pan and restock it with cookies. In the middle of the third round Hannah blows a razz-berry.

Which means she needs to go potty. Hannah is three and can not walk yet. Yet, she has decided to work on potty training. She has been doing this over a month now. I was planning on waiting till she could walk but no my little princess has a mind of her own. I don’t believe in discouraging potty training behavior; if she is ready, I need to be ready. (Honestly, it’s nice to have something behaviorally be easy.)

Ok, so I ask her "Hannah, do you need to go potty?"

She looks at me and does the sign for yes. So I pick Miss 32 pounds up and head for the bathroom while I grab a couple wash cloths and place the smaller seat to set on our conventional toilet. I place her on the camode and she immediately goes and starts working on something more fragrant. So I have her balanced on top of the adult toilet with my hands on either side in case she loses her balance. While she is in the middle of production, I realize I still have cookies that are in the oven. They are going to be done any minute.

The buzzer goes off but Hannah is not done.

Robert has gone out for the medication run.

Hmmmm what would McGuyver do?

Should I call the five year old big brother to make sure she doesn’t fall off. Nope, to much responsibility for one to young to understand the consequences. Should I let the cookies burn? Nope, with my luck today they would not only burn but also start a fire.

Then it came to me. The part Hannah is sitting on is removable and also fits on the child’s training potty it came with and that is right next to me in the bathroom. So I pick up Hannah seat and all and put her on the training potty which is closer to the ground.

I rush to the kitchen wash my hands pull out the cookies and turn off the oven. I figure I should wait before completing them till everyone is in safer place.

--Mom

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

We entered Dr. Purgatory's office at 3:00 pm this evening; we escaped nearly three hours later.  At first, I was optimistic.  We had misjudged traffic, and we had arrived 45 minutes early.  Patients were being called up at a reasonable pace.  The waiting room was big, and it had a small play section for the kids.  Waiting wouldn't be too bad, I thought.  We may even get called in early - a reprieve for the good behavior of arriving prior to the appointment.

No such luck.  Janette and I moved from Plan A through to Plan Z over the next three hours.  One entertained Hannah; the other, Gabriel.  Hannah sat in a waiting room chair well as I sang to her; Mom sat at the kids' table, acting out stories for Jay Jay the Jetplane and monkey figurines with Gabriel.  We switched.  Hannah lit up as Mommy sang to her, laughing; the figurine stories took a morbid turn as I injected my sense of play into Gabriel's routine. 

We switched again.  I carried Hannah around the office, pointing out artwork to her, asking her opinions (she reviewed them carefully, but offered no comment).  Gabriel, with my prior play in mind, turned into a doctor, performing completely unnecessary chest-cavity surgery on any patient that entered the play area.

We switched again.  And again.  Around 4:30 pm, we finally got our call back into the bowels of Dr. Purgatory's office.  Hannah was weighed (Mom accompanied) and brought back into the room.  Nurses visited.  A resident visited.  Then the main act, Dr. Purgatory, appeared about ten minutes later.  He apologized profusely for the delays. 

"I'm short two nurses today," he explained.

"Means you actually have to do some work?" I quipped.

"Well, means I have to do all the paperwork."

Dr. Purgatory enthusiastically gave us his ideas.  We just as enthusiastically reminded him of Hannah's latex allergies as he grabbed for the wrong gloves (twice).  As he popped in and out of the room, Janette, Gabriel, and I delivered bedside karaoke to Hannah, keeping her mind off of the upcoming skin sampling procedure. 

"Is she going to get a shot?" Gabriel asked.

"Yes, and they are going to take a sample of her skin." Janette replied.

"Oh, I don't want anyone to hurt my sister."

Awwwww. Both Janette and I basked in a big brother moment. 

A few minutes later, the doctor returned.  It was time to biopsy a spot on Hannah's skin (trying to identify what agent(s) are causing the severe rashes - not just hives).  The tray, previously assembled by a nurse, was brought closer.  Gabriel moved farther away, covering his ears.  Janette, I, and two nurses tried to hold Hannah still. 

Restraint does not make our little girl happy.  None of us could blame her, but the doctor did nice, quick work. 

It took us another twenty minutes to receive updated nursing orders and six plus prescriptions.  I joked with Gabriel that we were sleeping there tonight.  He didn't believe me, so I asked him to confirm with the remaining office assistants.  They confirmed with a smile.  He and I pretended to go asleep on the two-chair waiting room couches.  Subtle, huh?

We left the office at 6:00 pm.  We drove through the specialty pharamacy nearby (does compound medications) and picked up a waiting prescription.  McDonalds, the food of choice after a three-hour Dr. Purgatory visit, was next.  We ate and planned our secondary run to the local pharmacy for all of Hannah's new prescriptions.  I went foraging at Walgreens ("where everyone knows your naaame..."), returning at 9:00 pm, pretty much done for the day.

Hannah is now asleep.  Gabriel is still reading in his room, I think, but not pacing:  a good sign that he is slipping toward sleep.  Janette is filling in Hannah's nurse for the night on our medical adventure.  And I am just about to finish this blog and head off to other things.

-- Dad

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

In his Growing Up With a Disability blog entry "Reflections on Self-Love, Self-Worth, and Family," David observes:

"If I’m a little child I feel love and consequently, value when... Even if I'm not able to verbally respond, my aunt talks to me using my name, rather than about me with impersonal pronouns as though I'm not there...."

David's observations are all astute and helpful, but this one in particular grabbed my attention. 

Last Monday, sitting around the lunch table, I asked everyone about their day so-far.  Gabriel replied with the usual head-nod and "Good."  Janette filled me in on what she had done and liked about the day.  I then asked Hannah what she had liked about today.

Hannah said, "Bu, bu, bu."

I turned to Janette and the nurse that had accompanied her to school and asked about Hannah's day.  What had she done?  How was preschool?

Hannah said, "Bu, bu, bu."

Her nurse filled us in on how preschool had gone:  very well.  Hannah had sat and participated the entire time, only getting frustrated toward the very end.

Hannah said, "Bu-bbles."

I turned back to Hannah.  I had not given her time to respond.  She needed the extra time to get her thoughts out, express herself.  Instead, I had somewhat impatiently moved on to asking her caregivers, asking them to fill in the gaps for her.  

"Bubbles, Hannah?"

Yes, she confirmed via sign.

Hannah had enjoyed the bubbles at preschool.  They have a button that, when pushed, says "Bubble."  When the button is pushed, the teachers also blow bubbles for the kids to play with.  Hannah liked the bubbles.  And she was learning to communicate using the word "bubbles."

Chalk another one up to Hannah exceeding my expectations.  And another one up to Hannah teaching Daddy a lesson about listening.

-- Dad

Posted by Dad at 03:29 AM | Permalink | Comments (0) | TrackBacks (0)

I really get the munchies on these early morning shifts.  Granted, my internal clock gets shuffled, and my body thinks it's breakfast time, but these shifts aren't doing anything for my waistline. 

I just popped back into the kitchen for more coffee (third cup, but who's counting), opened the refrigerator door for milk, and saw the soy sauce.  Soy sauce made me think of Chinese food.  Chinese food sounds good, really good.  Local, kind of greasy chicken lo-mein good.

I shut the refrigerator door, disappointed.  I polished off our Chinese food leftovers on Friday, so there are none to be had.  Our CostCo, enough-to-last-a-year Cup of Noodles might have to serve as a replacement this morning.

As I head back to the kitchen to start that weird craving going, I am thinking now of meaningful eateries ('cause I can't spell restaurants - some mental block I've always had).  Here are a couple of my picks, starting with Chinese food of course.  Feel free to comment and add your own Places-To-Eat-That-You'll-Never-Forget:

• Sam Wo (San Francisco, CA):  Eighteen years ago, when I was going to San Francisco State, my best friend introduced me to Sam Wo's (as we pronounced it).  Main attractions:  open really late, lots of college folks, plentiful food at cheap prices.  Notice I did not mention quality of food or service?  Fun place to eat when you're in college.  BYOB for those that care.  Not sure how much has changed since I last ate there (looks like original owner died), but used to be, ah, cheap

• Shanghai Cafe (Bellevue, WA):  Unfair to stack this place next to Sam Wo's.  If you are visiting Bellevue, WA and want fantastic Chinese food, this is the place to go.  Shanghai Cafe is located near Factoria Mall in an unassuming strip mall.  Janette and I used to eat there often when we lived nearby and I worked for Amazon.com.  Noodles are hand-shaved and, according to the menu, the chef used to work in 5-star hotels.  I'd believe it.  I'd like to eat there right now, in fact (Cup O' Noodles kind of hitting the spot, but nothing next to hand-shaved noodles).

• Cup O'Noodles (Hillsboro, OR):  Kind of salty shrimp with vegetables version.  I like the chicken version better.  Just eight or more boxes to go, and I can switch back to CostCo's chicken version.  Yum.

Posted by Dad at 02:45 AM | Permalink | Comments (0) | TrackBacks (0)

I woke a little befuddled this morning.  We had no nurse scheduled tonight due to the holiday weekend, so my alarm clock bleeped at 2am, pulling the plug on a dream in progress.  I grabbed my glasses and my current read, The Elephant in the Playroom, and stumbled toward the office.

Janette was bright-eyed and bushy-tailed.  "Hey, I fixed that problem on our site!"  She said more, but I was still catching up.  She clicked through screens on our main site, www.kintropy.com, said something about fixing links, adding pictures, new tables, break tags.

I think I grunted.  She filled me in on Hannah's night so far, and headed off to bed.  I walked to the kitchen, unlocked the medicine cabinet, grabbed some ibruprofen for a beginning headache, and starting some coffee.  One or both are kicking in now, so I'm heading back to reading more from this month's disability carnival postings.  Favorites so far:

Emi's detailed review of a symposium on the "Ashley Treatment" at UW May 16.  Emi attended the symposium and delivers a running review/editorial on the speakers' positions.  Good links and discussions.  I'm sure I'll add a blog about the "Ashley Treatment" shortly, too.  So many things to say....

Jodi's discussion of anonymity, or lack thereof, when one has a child with a visually-recognizable disability. 

There are many, many more to read through at this issue's site.  I encourage you to go there and see which sites and discussions you find most interesting.  I'm heading back there myself.

-- Dad

Posted by Dad at 02:07 AM | Permalink | Comments (0) | TrackBacks (0)

I am currently feeling quite lucky to live in America. The politics aside it is amazing. I needed a break and my amazing husband suggested I go to see the new Pirates of the Caribbean movie. I latched on to the suggestion with enthusiasm that has been hard to muster in the past couple days.

As I pulling out of the garage I mused over my blessings. We have a home and a family. I don’t have to constantly worry that a war zone may appear near our home. We can get the medical care we need. Food and clothing is readily available. Modern plumbing is amazing. And we live in a society full of diversions. So, if we need a break and I can’t take a vacation. I can take a couple hour break without going to far from home. Poof an instant vacation.

I loved the movie. I don’t understand why the critics said the plot was unknowable and hard to follow. It answered a ton of questions and of course opened up more about the characters. The beginning has this great surreal quality. I got what I was looking for. I mind dazzling adventure. A mini vacation with no responsibilities for me.

My spring is back and I’m ready to face the days to come.

--Mom

Posted by parents at 07:00 AM | Permalink | Comments (0) | TrackBacks (0)

As Janette noted earlier, Hannah's hives aren't hives; they're something else.  In come the experts.  We have an appointment next week near the main hospital:  Specialist Central.

This is the routine with Hannah's diagnosises:  assume nothing.  All will be unique.  I think of it as a Ma Kelley moment.   I expect Johnny Dangerously to pop through her room, commisserate, chat up the Doc about the latest, new diagnosis ("Give it to me straight, Doc."), and figure out how he's going to pay for all this.  Like Ma Kelley, Hannah keeps up with her work (playing rather than laundry) and only brings up the discomfort when one of our approaches:  medicine, baths, clothes-cover aren't working well.

Gabriel, of course, is playing the part of Johnny Dangerously:  full of heart and mischief.  When I came home for lunch yesterday, he was busy building an obstacle course of kid chairs, blankets, and toys buttressing the family room couch.  He was jumping and running between them.

"Gabriel, that's not safe."

"Daaad, I'm being careful."

"You're going to get hurt."

"No I won't."

Hmmmm.  Quite the adventurer.  I'm the family kill-joy, but I can see the future:  bandages and all.

Still, Gabriel-Johnny keeps Hannah involved, even when climbing his obstacle course.  He stops to talk with her, sing to her, help her sit up.  Most of the time, she basks in his attention.  At other times, when she's busy playing with her own toys or solving her own puzzles, she fusses and gives him the Ma Kelley Lower East Side eye, seeming to say, "Why you botherin' me?  I'm playing here!"

-- Dad 

Posted by Dad at 01:44 AM | Permalink | Comments (0) | TrackBacks (0)

Thursday was crazy.

In speculation about Hannah’s rash I decided it wouldn’t hurt to do a cleaning sweep of her room. Dust bunnies love me and propagate like crazy in my house.

I went to work on cleaning Hannah’s room while she was in the family room with the nurse. I have one of those hand held steamers for cleaning. (I’m always looking for ways to sanitize without using harsh chemicals.) I use a mixture of white vinegar and water in it. So I stripped her bed and steamed the entire thing then I did some spot cleaning around the room. Then I got the footstool and cleaned the fan in her room. When I was walking away and setting aside the stool, I thought I was making good time. I was going to grab baking soda to sprinkle on the carpet then vacuum it up then do something similar in Gabriel and my bedroom. Suddenly the glass covering that covered the bulb of the fan fell. It shattered.

My plans for the day changed in that moment.

I grabbed the dustpan and swept up the glass. I was glad neither of the kids were in the room. I forced myself not to go into the "what if "spiral. I was surprised by the amount of glass and that it fell hard enough on the carpet to shatter. So I emptied her room and vacuumed 20 times. The nurse and I decided that the vent circuit should be changed even though it was brand new the day before. I wasn’t going to risk that glass embedded itself somewhere in the circuit and have Hannah inhale it into her lungs. I also vacuumed down the ventilator machine. For some reason I didn’t get around to cleaning the other rooms.

I went to the hardware store to find a new cover preferable plastic.

Posted by parents at 11:51 PM | Permalink | Comments (1) | TrackBacks (0)

I’m feeling uncharming, unproductive and useless today. It is a holiday weekend, which means Robert, and I have extra shifts this weekend of staying up and trading off. After that month we had two months ago I didn’t plan to mourn my sleep/ free time so much. I really have nothing to bring this case of malaise down on me which annoys me further.

I keep reminding myself it is ok to have unproductive days.

Truthfully today was pretty productive. I got us to the allergist at 9:00am for Hannah’s all over rash. (Yes, we are still dealing with and will be seeing the dermatologist Tuesday. The allergist is sure it is not completely just a histamine reaction) It is right next to a bakery so I stopped there to pick up us all a treat. I’m a sucker for baked goods. Then I loaded everyone back into the vehicle and went to the post office. Robert had done bills and we didn’t have any two-cent stamps for the new price change.

I also picked up the new Star Wars stamps. They are pretty cool. Gabriel was a complete gentleman the entire time. He held the doors for Hannah and I to maneuver through.

Once we got home. I pretty much collapsed and didn’t want to do anything else and I think it was only 11:00 in the morning. LOL

I tried to coax the children into watching TV. Gabriel turned it off several times to tell me that I had enough today. I pulled out the mommy card and let him know that he wasn’t the boss today. I also managed to cook dinner.

Ok, I didn’t do that badly. So what if the dishes are still on the counter and I’m avoiding the washing machine like it is the plaque.

--Mom

Posted by parents at 10:35 PM | Permalink | Comments (0) | TrackBacks (0)

It is Thursday night, and I am in a Sleep Optional mood.  Tomorrow is Friday.  Just one more work day to stretch toward a three-day weekend.  I can get through Friday on less sleep, right?  Five hours?  Yeah, I can do that.

Both kids, of course, are in the same frame of mind.  Hannah and I spent time in the office tonight, singing while spinning slowly in the office chair.  We took it in small bits both because I didn't want to overwhelm her, and I didn't want to inspire nausea in either of us.  Hannah loved it.  She laughed and giggled, sitting up, lying down, trying different positions as we rotated.

She wasn't so happy when I put her back in her room with Mom, said my good-byes, and walked back to the office.  Our good-byes are rarely easy, and this one was no exception.  I revisited when Hannah's nurse arrived for the night, played, left - same result.

Gabriel joined me in the office afterward, having had his fill of Madagascar on tv.  We chatted and watched some volcano videos over the internet.  I switched to Stern-Daddy-Voice, indicating it was really, really time to go to bed, and he is lying down in his bed now.  Quiet music is playing.  Here's to hoping he'll sleep soon.

As for me, I'm stealing some personal time.  Today was a stressful, not-so-pleasant day for Janette and me.  Different reasons, same result.  Just one of those days when events and moods converge for the perfect storm.  So now we're retreating to our corners and comforts:  her, a book; me, lots of coffee. 

Coffee is pretty much my answer to everything, I think.  Shopping is my other stress reliever, but not a great outlet prior to payday.  Good thing the closest record store is about a half-hour out (yes, they actually still stock used vinyl & they are open 'til midnight).  Anyone who knows me well will tell you that stress + record shop + time = lots of vinyl purchases.  Given my penchant for obscure early80's music and for taking a risk on albums because I like the cover art, that could get really ugly at this time of night (note:  video link).

-- Dad 

Posted by Dad at 10:14 PM | Permalink | Comments (0) | TrackBacks (0)

If you haven't walked around a blog carnival, check out this month's Disability Blog Carnival.  The current issue is families, primarily those that experience disabilities.  I am a newbie, but I found last month's Carnival about "Firsts" a great way to explore ideas and find new favorite blogs.

-- Dad 

Posted by Dad at 08:41 PM | Permalink | Comments (0) | TrackBacks (0)

This morning I was watching It's a Big Big World on PBS with Hannah. It is a puppet show with CGI that teaches about the natural world and scientific observation to very young children. The puppets are cute and the writing keeps me entertained. (I learn a thing or two too) The songs are great; Gabriel and I will hum them all day.

I really do love the show but today something odd about it bothered me. No, not the multiple animals talking to one another isn't what I find odd. There is a main character named Bob the anteater. He bothers me in a creepy way. Yeah, I know he is a puppet. Today's show was about how Bob wanted to be more appealing to the ants. So he is tries different things like other animals coloration. The main point in the end is all animals are the colors they are for a reason and they should be happy about who they are.

Great message but I see an underlining message. Bob is an anteater and he acts sweet and is trying to be friendly with the ants. He tries to have picnics with the ants. He gets sad and whines they don't stay with him. Except technically I know the ants are the picnic. I see this whole scenario in my mind where he is sitting down with a group of ants and they are all having a pleasant time. Meanwhile some of the ants are disappearing while he is trying to cover up a slurping sound with a laugh or a whine.

Creepy!

It’s a good underlining message in my opinion. Beware of people who are too needy they might be just hiding the predator with-in to get you to move closer.

Yeah, Yeah I know it’s a kids show and the writers weren't trying to convey that message. And besides anteaters mostly eat termites. I just call Bob, Hannibal in my head.

--Mom

Posted by parents at 12:11 AM | Permalink | Comments (1) | TrackBacks (0)

Parking in our garage this evening, I could smell the baked chicken through the door:  a sweet, smoky smell.  Just right, I thought as I walked into the house.  Gabriel was parked on the couch, lounging in his pjs and lost in Nintendo DS land.

I wandered through the kitchen, peeling back some tin foil to admire the golden chicken sitting atop the stove, back to the kids' shared bathroom.  "Smells good!" I grinned.

Janette may not have heard me; she was busy giving Hannah a bath.  Hannah kicked playfully at the shower spray tickling her feet.  She smiled up at me, a constellation of red, botchy hives burning brightly at me from her trunk and arms. 

"I'm going to schedule an appointment with the skin doctor," Janette mused.  

"Need help?" I asked.  We were expecting company for dinner.

"Yeah," she brushed the hair from her face.  "Could you peel the carrots?"

"Sure."

I walked back into the kitchen.  Hannah's hives had started up about two weeks ago.  Despite increased medicine, attention, and a doctor's visit, we were not winning the battle.  It concerned me.

"Gabriel," I called.  "Gab-ree-el.  Gab-REE-AL!"

I broke through the electronic haze.  He looked up from the couch, giving me a nasally "Wh-yut?"

"You want to help me peel some carrots?"

"G-noo, tanks," he replied, turning back to his game.  "I'mnh snick."

So I flipped on the evening news and began peeling carrots.  Gabriel wandered over, coughing prodigiously.  "I'mnh snick."

I stopped and observed.  The stuffy nose was obvious; it had started a day or two before.  But his breathing seemed a little more forced now, and the coughing was relentless.  "Okay, let's start some medicine."  Albuterol - two puffs.  "Let me know if that feels better."

"It duz."  Sniff.

"Drink lots of water, please." 

Our dinner guests were due any minute.  Janette finished Hannah's bath and came back into the kitchen to finish dinner.  Hannah sat in the middle of the kitchen, taking it all in.  Gabriel climbed off the couch briefly.  He looked flushed.  I took his temperature with an ear thermometer.  99.8 F.  Time for ibuprofen.

Ah, yes, I thought of our soon-to-be-dinner guests:  Welcome to Plague House!  It is one of those rather frequent moments when you can see the tendrils of illness creeping through the house, claiming one victim at a time.  I'd be on fever patrol with Gabriel tonight, I was sure.  I wasn't sure who was up next, but I was sure there would be a next.  And a next.  I began mentally planning the what-if-I-need-to-call-in-sick scenario (need to grab laptop, etc.) - lining up contingencies. 

The front door opened, and our guests poured in.  Gabriel promptly announced.  "Imnh snick."  And I began my apologies.

Posted by Dad at 10:00 PM | Permalink | Comments (0) | TrackBacks (0)

I’ve had a long day. We took the whole family to the mall. I had to take a nap when we got home. I kept wondering why then I remembered it wasn’t the walking it was the lugging the oxygen tank and other medical equipment around with us.

Robert my hero made dinner. Then we all went out again. We went to get Robert’s coffee, which is conveniently right next to a bookstore. So we got to feed both of our addictions.

Hannah was ecstatic getting to go out twice in a day is a real treat for her. (And me too)

We wound down for the night. Robert got Gabriel to bed while I took Hannah to her room for her nightly watching of Laurie Berkner. Once the nurse got here I snuck out to the family room to watch The Tudors with Robert , our version of a date.

Then I go to our room to get ready to sleep. I’ve been playing Cake Mania on my DS lately for brain clearing fun.

So I’m ready to go to sleep at 11:30pm. Robert walks in and the first thing he says "I’ve been reading an article that is disturbing." Apparently Texas, has the Texas Futile Care Law also known as the Advance Directives Act which gives "health care facility the right  to discontinue life-sustaining treatment against the wishes of the patient or guardian ten days after giving written notice if the continuation of life-sustaining treatment is considered medically inappropriate by the treating medical team." (quote from: http://en.wikipedia.org/wiki/Texas_Futile_Care_Law)

For some reason I’m not ready to go back to sleep. This is not the first time. I love these conversations but, I really have troubles calming my brain down as it is. Then these happen and I’m lucky to get any sleep.

BEEP! BEEP! WHIRL! WHIRL!

WARNING I'm Jumping on a Soapbox Now 

The following is not for humor seekers.......

I find the Texas thing horrifying. I understand the financial view but I DON’T agree that accountants or insurance agencies should be making medical decisions. If our health insurance company had it’s way our daughter would be in a nursing home. We would hardly know her and she wouldn’t have the attention that is helping her make the strides she is making everyday.

And a sub-note on the 10 days mailing thing. When our daughter was in the hospital I was lucky to get home from time to time let alone check the mail. I slept, bathed and ate when I got home that is about it.

Ok I’ll jump back off my soapbox now.

Hmmmm that feels better I think I can sleep now.

--Mom

Posted by parents at 12:39 AM | Permalink | Comments (2) | TrackBacks (0)

A local Forest Grove blog reminded me that today is Armed Forces Day.  A quick thank you to Pop-Pop, Janette's dad & a recent & welcome visitor to our home, for his decades of service in the Marines!  We appreciate all you have done for us & for your country.

-- Dad 

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

A few weeks ago, my brother mentioned that Colin Hay was playing in town for two nights.  And when he said in town, he meant literally in my town.

"In Hillsboro?" I asked.  "Really?"

"Yep, at the Art Center downtown.  You want to go."

The former lead singer of Men at Work was playing in Hillsboro?  Hillsboro, OR is about 17 miles west of Portland, has about 87,000 people living in it, and seems far, far away from KROQ in Los Angeles:  the station where I first heard Colin Hay sing.

I knew a few Colin Hay solo songs, but not much.  Usually, I go to a concert "more prepared", knowing a good portion of the artist's catalog & such.  But this event had several advantages, including

• a quick commute from work - I could just jump on the Max train with my brother, run a couple of stops, and be there
• a chance to hear a non-children's artist live.  With guitars, even!
• a NIGHT OUT AS AN ADULT

The last one was a clincher.  So Thursday night, I limped down to the Max station (nursing a calf injury), met my brother, and maxed to downtown Hillsboro.  We enjoyed a pretty good dinner, actually, at the Sports Look restaurant and bar (recommend the prime rib dip and honey beer).  We arrived at the Glenn & Viola Walters Cultural Arts Center just a little after seven - about an hour before the concert started.

I won't give a detailed review of the concert (though it was quite good) except to say:  go see Colin Hay if you get the chance.  The songs are great, particularly acoustic (the best way to hear concerts as I grow older... and older).  Even better, a good third of the concert was Colin Hay telling stories from his life on the road as a touring musician and at home in Scotland and Australia.  His observations were funny and engaging.  Both my brother and I had a good evening out.

As I write, I am listening to a mix of newer solo material and acoustic versions of Men at Work hits from his album, Man At Work.  You can visit his space on My Space .  If you want to revisit the 80s with his band, Men at Work, I'd recommend this best of or Business As Usual - the album that, along with MTV, broke them as hit makers in America.

-- Dad

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Decades ago, my parents dragged us kids to every fabric store, yarn show, and craft warehouse imaginable.  They did it to support their needlecraft and wholesale finishing businesses;  I did it because they made me.

I hated those places.  It was a difficult sell for my parents, too.  How do you convince a seven-year-old, introverted reader, who also happens to have red/green color blindness, that yarn = fun?  Do you

1. emphasize how interesting the mingling of heavily-perfumed, mature women will smell?
2. challenging him with spontaneous color testing as you walk the aisles ("what's that look like to you?")
3. proudly proclaim with arms outstretched that "One day, this will all be yours!"
4. drag his limp body through the aisles, promising departure in an indeterminate "just a little while."

Ding!  Number 4, we have a winner!

As a parent today, of course... no, I still really hate those places.

But my parents' business, aside from putting food on the table and a roof over our head, did produce Hannah's Tailor:  her Zadie.  For that, we are thankful today.

Today we received a care package from Zadie with the latest and greatest in Hannah wear.  Summer is here and embroidered jeans are all the rage!  My dad does beautiful work and cutomizes Hannah's clothes to work well with her body size and shape, her medical supports, and her many contact allergies.   Elastic is kept away from the skin.  Tops are modified to accomodate her button g-tube.  Neck lines allow for her trach and ventilator, but still look youthful, cute, and ready for the catwalk.

So a thank you to both my parents for their love and support.  A special thank you to Hannah's Tailor.  And Janette, you can continue to be the one to cruise the craft stores for new fabrics and material.  Still hate those places

-- Dad 

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Tonight, Gabriel was determined not to go to sleep.  Hannah was too, for awhile.  I stayed clear of her room (Dad = playtime & instant tears when he leaves the room), trying to give her some time to settle into sleep.  She finally gave in around 9:30pm.

"Gabriel, you want to watch W.I.T.C.H. with me?" I asked him in one of his many visits to the family room to see how I was doing.

"Yeah, sure.  I need to go tell Mommy."  He raced off excitedly, shouting to Mom (in close proximity to Hannah's room), "Daddy said I could watch W.I.T.C.H. with him tonight!  Isn't that cool?"

My objectives for asking him to watch tv with me were to 1) get a little time with Gabriel myself (been a little light on time with both kids this week), 2) acknowledge the FACT that forcing him to fall asleep was a physical impossibility, 3) keep him out of Hannah's earshot while she was sleeping. 

Two out of three isn't bad, I guess.  He drifted back to the family room, and we watched the animated W.I.T.C.H. episode together, fast-forwarding through commercials that he was oh-so-familiar with.  The show ended, and I sent Gabriel back to bed.

10:20 pm - he was still popping around his room, externalizing his conversation & play.  Not tired at all.

That's okay.  I needed to go out anyway.

"Gabriel, I'm going out to get a coffee.  Want to go?"

"Yeah, sure!"

So Gabriel and I ventured out to Insomniac Coffee.  We chatted in the car and ordered our drinks once inside.  Gabriel:  strictly a milk and cookies kind of guy.  Me:  tripple real carmel latte.  Gabriel's milk didn't last long.  He inaugurated their brand new real wood floor with a splash of milk and a scattering of straws.  One of the owners graciously cleaned up our mess while I relayed paper towel to him.

Gabriel got his I'm-sorry-and-embarassed-about-to-cry face on.  I let him know it was okay, and we ordered another milk (which I carried back to the table for him).  We enjoyed our drinks and talked some more about how his week had gone.  Finished, we headed back to the car & home.... where I can still hear him playing and chatting with himself at 11:45pm.  Well, at least Hannah and Janette are still sleeping.  For now, anyway.

-- Dad 

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Last week, I was getting things ready for Hannah’s first day of school without me. Her travel suction was charged, ambu bag ready. I checked her oxygen tank and it had a decent amount for two plus hours, and I refilled the diaper bag with essentials. Then I went to load it on her Kid Kart (young person’s wheelchair) I noticed a major support screw was sticking out. I set everything back down and examined it closer. That screw was missing the nut that it screwed into. I looked at the other side, which mirrored it and realized it was no normal nut I’ve ever seen before. It looks like a washer with a flanged circle the bolt screws into. I scanned the floor mercilessly around where the Kid Kart normally sits. Nope no nut. It could of happened anywhere. I opened up our mini van and looked all over the main cabin floor. Then I looked in the back storage. Nope not there, either.

There was no way she could go to school in the chair without the bolt secured.

My brain went into hyper drive. How was I going to get her and all her equipment to school? Once she was there she wouldn’t be in a chair. She would be in a Rifton chair or sitting on the floor. Last month I was cleaning up our storage shed, where I found two big strollers I had used with Hannah before we had the kid cart. I had been thinking I should sell them. Luckily I hadn’t done that yet. So I dug out the two-seat stroller. It is convenient way to transport Hannah and her equipment. So I sprayed it down with vinegar and proceeded to wash off the cobwebs.

She was able to go to school but I have now begun an odyssey of the wheelchair part search. I had no idea where the paperwork for the Kid Kart was so I grabbed my latest receipt for her Rifton Pacer and called that supply company. They had carried Kid Karts before and Hannah was in their system so they were willing to have me talk to their tech. I talked to their tech he encouraged me to come in with the chair. They are located in Portland. I live in a suburb that is only about twenty minutes away. No big deal but, I can’t drive alone with Hannah so I need to wait for a day I have a day nurse. (Oh yes I had a nurse that Monday I was sick that day and to exhausted to try the drive) Thursday was my next nurse day; so on Thursday I map quested the directions loaded Gabriel in the Mini-Van. The freeways around Portland are not cut and dry. Sometimes you have to go on one exit to get to another exit yet not completely go to the other freeway. Trust me it makes more sense if you ever drive here. Anyway I guessed wrong and ended up on a freeway heading east. So I exited and worked my way back to the area and actually made it to the location.

I coaxed Gabriel out of the vehicle and push the frame to the door. Yaayh, it’s an automatic door. The building is clean inside but decidedly tired looking. I’m pretty sure if I had been there ten years ago it would have had a cloud of cigarette smoke swirling around it’s ceiling. I walked to the sales desk. Nobody acknowledged me. They were busy with a major sale. So I looked about the room and saw a sign that said repairs. There was a receptionist with long manicured nails and big hair talking intently to a coworker in the cubicle/desk next to her. I walked to the desk. I waited a few beats. She hadn’t turned her head yet, so I knew she hadn’t seen me. So I spoke cheerfully "Hi there!"

She paused and looked at me. Finished her sentence and straightened up. "May I help you." I smile and go into my diatribe and show the missing piece. She never looks at the equipment but checks to make sure Hannah is in the computer. There is no way a tech can look at that day. "I’m so embarrassed but, we are swamped. "

"Can I just see a part book and order it?" I say.

"No, a tech has to see it. How about tomorrow?"

I shake my head "That is not possible. I explain my child is medically fragile and I have a nurse today not the next day."

That sets off a bell in her head. "I can schedule a tech to come to your house next week. How about Tuesday."

I accept it. "Sounds great" Meanwhile Gabriel announces he needs to go potty.

She directs me to the bathroom and says she will set it up while I take care of Gabriel. We wait outside the Women’s bathroom. The door is locked. One minute, two minutes passes I finally try the door to the men’s bathroom it opens and its just one big room with a lock. A great lesson I learned from pregnancy is that most gender specific bathrooms are just suggestions.

So that is put on hold till the next Tuesday.

The Tech comes out. "You don’t have that piece?" He gestures at the weird washer.

This floors me, if I had that part I would not have bugged them. I would of just put the piece back on. He comes up with some interesting jury-rigging ideas that involve putting the bolt in backwards. Even though it isn’t securely locked in anything he is convinced it is still usable. I’m pretty sure he is wrong. (He doesn’t even know how the chair goes together) So I reattach the seat into the frame and watch it fall. He seems shocked that it is a problem. My confidence is not growing. He leaves me his card and says he will look into it. For some reason I’m not reassured.

So that night I do a search again for the original paperwork. This is hilarious; the binder I organize Hannah’s medical records in has it. It was even in front of the Pacer paperwork. I don’t know how I missed it. So I call that company and they told me to call the manufacturer. I call the maker. They have no idea what piece I’m talking about. I offer to photograph it and email it to them. They tell me to go back to the vendor. So now I have a call back into the vendor.

I think I’m going to be using the stroller for awhile.

Meanwhile there is this whole diaper business going on simultaneously that I won’t go into tonight because it is late and I need sleep.

---Mom

Posted by parents at 10:41 PM | Permalink | Comments (0) | TrackBacks (0)

While Hannah was at school today and after I mowed the lawn Gabriel decided it was time for troubling kid tricks. I was folding laundry as we watched Sesame Street. Gabriel took the huge green pilates ball and set it on his child size stuffed chair. Then climbed on top of it. So he is precariously perched on a ball which is sitting on a chair. It could roll off any minute.

If he were 2 or 3 I would be removing the ball. He's 5 and his balance is pretty good. I do realize I will be getting some payback from my childhood. I was a daredevil. To this day I still look at most things and think 'How would I climb that.' Or 'that would be cool to do a back flip off of.' So I'm working on him thinking about his safety during his silly stunts. I scan the room. As I continue to fold, I know he is waiting for me to get up, I start to point out things. "Ok Gabriel, this isn't a good idea, but if your going to do this remember when you fall avoid the corner of the train table and that pointy toy of Hannah’s."

He looks at me sheepishly "What pointy toy?"

"The one you call a cheese tray." It is a shape sorter that uses clumps of posts instead of holes. Hannah loves to chew on the pieces. "Do you see it Gabriel?"

He has become re-engrossed with the TV.

We sit there a moment me folding and watching him. I'm ready to spring any moment then I see Hannah’s chair. It is the same size and design just a different color. So I make a decision to put it facing his. Creating a trough for the ball to roll between. Gabriel agreed it was a good idea then got more interested in the chair configuration and abandoned the ball.

Whew!

So the chairs became a bed and a boat. It worked well because he said the couch was my boat so we both got to lounge on our boats.

--Mom

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Today, we celebrated our traditional Mother's Day tea together.  I had been buying inordinate amounts of cheese, crackers, and sweets all week (it's about the variety, not the quantity, I explained to Janette), and I assembled it this morning.

We have celebrated Mother's Day this way every year since Gabriel was born.  That first year, we had tea at a place in Issaquah, WA; since then, we have made our tea at home.  Last year, we had to delay the tea due to illness (everyone was sick), but this year it went off without a hitch.

This morning, I called everyone in and asked them to pose for the group picture above.  Then we dug in.  Hannah used a pink plastic teacup. I put a little milk inside; she promptly flipped it over to chew on the handle, dripping milk on pants, chair, and floor.  Oh well, no use crying over... you know.  She was done with the whole scene pretty quickly.  Bored, she returned to the floor to play with her toys.

Gabriel wanted cold tea, so I gave him a little tea, lots of ice, and some sugar.  He pronounced it good.  After a sip, he said, "Can we have cookies now?"

"No," I said, "we're going to have the cheese and crackers first."  After a bite, he also pronounced the cheese good.

Janette enjoyed her tea with milk and sugar.  I brought honey to the table for mine along with Janette's presents.  Janette opened the (rather quickly and poorly) wrapped gift.

"Oh wow!  Animaniacs!"

Yes, Janette is truly a kid at heart.  I put the DVD on while we proceeded through our teas.  Gabriel was so engrossed in the Animaniacs that I had to prod him with the cookie plate itself to let him know we had moved to the dessert part.

Later, Janette, Hannah, and I enjoyed her other gift, Music and Lyrics DVD, in Hannah's room.  Hannah snapped back to the tv during the singing parts, but otherwise wanted to be picked up and entertained by me.  Gabriel popped in and out, having moved on to Teenage Mutant Ninja Turtles himself.

Later, as Hannah slept, Janette took the opportunity to once again work on the Sisyphean task of building the playstructure with Gabriel's assistance.  All in all, a good, relaxing Mother's Day for the family.

-- Dad 

Posted by Dad at 08:52 PM | Permalink | Comments (0) | TrackBacks (0)

When something unexpected happens, people want to find the right words to express sorrow, support, and comfort.  I came across another blog describing this experience, and it reminded me of our experience when Hannah was born.  As Hannah moved from an eight-hour post-birth observation period to a two-week NICU stay, we heard all of the following:

"G-d only gives you what you can handle."

"You get to have a baby girl forever" (a NICU nurse making a prognosis for Hannah)

"Why did it have to be you!"

"What's the prognosis?"

These are the more extreme examples of, um, support?  Alternately, our neighbors congratulated us on the birth of our baby girl and put together a homemade Welcome Home sign for her.

I have always recognized the first set of comments to reflect people's innate need to put events into a context they themselves can understand (and find comfort in).  I think those comments are offered in genuine support, but with me, they miss the mark. 

I remember sitting in NICU, holding Hannah to my chest, and singing "Yesterday" to her.  I wasn't thinking about her diagnoses; I was enjoying our closeness, her warmth.  I was looking forward to taking her home and learning what it was like to have a family of four.  I didn't need to know how steep the mountain we would climb together would be.  I needed to hear that we had a gorgeous little girl.  I needed to hear "Welcome Home, Hannah."

-- Dad 

Posted by Dad at 08:11 PM | Permalink | Comments (0) | TrackBacks (0)

This morning, we all converged on Hannah's bedroom.  Hannah, busy playing with her Bee, spotted me at the door and called me inside.  I picked her up and spun her slowly:  her personal daddy-go-round ride.  I sang "Take Me Out To The Ballgame", and she giggled and laughed as the daddy-go-round transformed ("1... 2... 3 strikes you're out") into a rocking roller-coaster.

I set Hannah back down to the floor, and she, predictably, complained.  Gabriel chased me down there.  "Dad, I have a surprise for you."  Much to Hannah's disappointment, he lept into my lap and thrust his Nintendo DS in my face.  "Daddy, see, this is Princess Peach's castle."

Janette clung desparately to sleep, laying beside Hannah, trying to lure her into their shared morning nap.  Hannah was having none of it, signing for more singing.  Janette gave up, sat up, and Gabriel quickly abandoned my lap for hers.  Hannah smiled, pleased to have Daddy to herself, as I helped her to a sitting position and began a new song.

And much of the day mimicked our morning dance.  We were the perpetual motion family today:  full of friends, family, Wii, singing, laundry basket races, and pizza.  We did not make the Beavers game, but we'll catch one another weekend.  Good family & friends day for everyone, I think.

-- Dad 

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

For those following us at our main site, www.kintropy.com, I have added a new "article."  Putting that in quotes because it is turning more into a family history than the fatherhood-advice articles I initially thought I'd focus on.  We'll see how it goes over time, though.

These articles are a little more thought out and edited than our blogs.  Feel free to sample them and tells us what you think:

Parents Panel:  Advice to expectant fathers - oh, how things will change

A Change In Plans (Part One):  Our first child, Gabriel, indoctornates us.

Ultrasound Map (Part Two):  Our second child, Hannah, prepares to join us.  Our main page for posting new articles (will update to a permalink later) [edit 5/8/07:  moved link now to a permalink site - this link now updated]

***

Also on the Mommy side of things:

Fear Factors:  Having kids from Mom's perspective.  Not related to the tv show, much

***

We're also working on updating our recommends page.  Janette was working on it this morning after the kids went to sleep and chugged along on it until about 2 am!  Hoping to get that up by the end of the weekend, and we'll link back to our blog with all of those details.

Thanks,

-- Dad 

Posted by Dad at 03:59 AM | Permalink | Comments (0) | TrackBacks (0)

Just a quick mention for former/current debate and MUN geeks (you know who you are).  A friend turned me on to NPRs Intellegence Squared program:  a set of Oxford-style debates on contemporary issues.

Tonight I am listening to pro/con on  "Better More Surveillance than Another 9/11" while taking a night shift with Hannah.  After waking briefly when I took over the shift (Daddy-detected:  must wake up and play!), she has gone back to sleep, so I am listening to the unedited web stream version of the debate for now.  An edited version is also available for download on the site above.

Favorite debate so far:  "Is America Too Damn Religious?"  Both the pro and con sides put forward excellent cases; well worth a listen.

-- Dad 

Posted by Dad at 01:45 AM | Permalink | Comments (0) | TrackBacks (0)

Last night, I drove over to Fred Meyer a little before 9pm.  Ostensively, the trip's purpose was to purchase groceries:  also good cover for looking at Wii accessories.  Janette had our Elvis Costello mix CD playing her last trip out, so I cranked up the volume and down the windows.

First stop:  Dutch Brothers coffee.  I crept through the drive-thru line, treating the guy in front of me to rear-view American Idol as I belted out Brilliant Mistake with Elvis. 

"He thought he was the King of America / where they pour Coca Cola just like vintage wine." 

I got to the window shortly thereafter, but didn't want to turn down the volume.  In the middle of the chorus?  How could I?  As a result, after some brief shouted chit-chat, my tripple-shot Milky Way came back as a tripple-shot Mocha.  I drove off, sipping.  Oh well.  Still great coffee.

Green Shirt kicked off as I rejoined traffic on the main highway.  

"But you tease and you flirt / and you shine all the buttons on your green shirt."

I beat the steering wheel in time to the song's snare drum rat-tit-tat-tat.  List of things to do at Fred Meyer:  lottery ticket, Wii accessory check (window shopping), groceries, check on Beavers tickets.  This weekend, we're planning a family trip with my brother's family to see the Beavers play at PGE Park.  This will be Hannah's first baseball game (provided her strep infection is under control - at 5+ days of antibiotics, we should be okay).  I'm sure she, Gabriel, and I will be walking around the building for most of the game (Hannah, for the movement; Gabriel, for the treats), but it should be a good day out.

At Fred Meyer, I didn't buy any Wii items (kind of a surprise to me, too, actually).  I grabbed the groceries after correcting a double ring on Hannah's diapers (her skin reacts to bleach and/or chlorine, so we have to buy Seventh Generation diapers:  kind of expensive), and I headed back toward the house.

Tiny Steps waltzed from the speakers as I exited the parking lot.

"Tiny steps almost real. / Tiny fingers you almost feel."

Although the song is definitely not about infants (as always, the song is a bit cynical and biting), it brought to mind Hannah as I headed home.   

Two months ago, I walked into Hannah's room with Janette.  I had seen Hannah start to crawl backwards twice, but no one else had.  "Hannah, can you crawl backwards for Mommy?" I asked.

Hannah, already on her tummy, pushed herself up to look at me.  She looked at her right hand.  Very deliberately, she picked it up and moved it back a step.  She looked over her left shoulder; her left foot slid back.  She glanced up at me and smiled.  Then she repeated the movements on the other side.

I was amazed.  Her movement wasn't too surprising; I had seen her start to crawl backwards at least twice.  I was more amazed that she had understood my complex request and put it into action.  She had also smiled up at both Janette and me, proud of her accomplishment, which we both cheered loudly!

Since then, she has pivoted in a sitting position to a different position.  She rolls freely across the carpet in seach of toys, particularly the Bee, and playmates.  She is standing with assistance for longer periods of time, and she has even held a standing position, with the help of Gabriel's train table, all by herself.

Last night, as I parked the car in the garage and walked into the house, I celebrated the fact that Hannah is working to meet her own inclusion-through-movement goals.  Pretty soon, when I open that door to head out to Fred Meyer, she'll be walking at my heels, demanding to go!

-- Dad

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Today I dragged Gabriel through the mall. At times it seemed literal. I was big game hunting for Daddy. The Wii (Pronounced We) was the pelt in question and a five year old has only two speeds. The speeds are recklessly fast or molasses slow. There is no in between. So, pulling into the parking lot I’m filling him in on the agenda.

"Ok Gabriel, we are going to three stores. We are looking for a game system surprise for Daddy. Then we will go to lunch at the Cheesecake Factory."

"Hey Mommy, why are we at the mall? Can I have some Cinnasticks?"

I let him know that after lunch and if everything goes well sure. Then I repeat the agenda I think ten more times. Meanwhile I’ve found a parking space and got us entry to the mall right at Cinnabon. So as we walk past I have to remind him that the promised Cinnasticks are only available later. Meanwhile he has noticed the entire floor is a mosaic of geometric tiled colored stones. He slows to try not to step on cracks.

"Hey Mommy, don’t step on the cracks."

There were a great deal of cracks. The pace was not as quick as I would like since most of my search has involved be told "If you just made it an hour ago." Then he realizes that there are different colors staggered in shapes. "Hey Mommy, don’t step on the cracks and only step on the white ones."

I smile he has turned a tedious chore for him into a game. I’m suddenly reminded of an Anne McCaffrey

Book The Dolphins of Pern where dolphins are narrated characters who are always up for games. I realize he is doing well, I&rs