Kintropy In Action

We are blessed to live near the Washington County Fairgrounds.  In October, we get Frite Lites:  a Halloween-themed light display; in summer, we get the Washington Country Fair.  

In prior years, one or more of us has been sick or hosptialized and unable to go.  I've been able to take Gabriel a few times, but not Hannah or Janette.  This year, we are on something of a hosptial intermission.  We know Hannah is going back in, but we don't know when, what might prompt it (e.g. an emergency or a scheduled appointment), and how long she may stay.  Given that, Janette and I seemed to agree silently that this would be a busy, family weekend out.

We arrived at the fairgrounds around 11am, and the crowds were light.  Janette's dad and Gabriel picked up some Kettle Corn for the walk; I, grilled corn on the cob.  A carousel spun nearby, and, after quick discussion, we headed that direction.

I am a sucker for carousels.  I own carousel books, visit carousel museums, and, with the kids, now have an excuse to ride them again (for a few years anyway).  Gabriel enjoys them, though I think the Tornado spinner is beginning to beat out this simple pleasure. 

This was Hannah's first ride, though, so I was excited to see how she would react to the ride.

Well, a morning nap might have helped.  Hannah was okay provided I was singing.  I held her as I stood beside her horse, singing and playing.  She seemed surprised when the carousel started turning and the horse rising and falling on its pole.  Not startled, exactly - just kind of interested to see what would happen.

Two minutes would have been okay, I think.  For some reason, though, Hannah hit her threshold just before the ride slowed and began crying.  I unbelted her as the ride ended and passed her to Janette waiting nearby.  Gabriel dismounted himself.

Hannah was happier to be back in her Kid Kart, moving again. 

We had some more holding and singing time while Gabriel rode a kiddie roller coaster.  But then Hannah was ready for a nap.  Janette and her dad took Hannah off for a stroll while I waited for Gabriel's ride to complete. 

Later, we joined back up at a picnic table, and I finished singing Hannah to sleep.

All in all, even with the crying, it was nice to get out and spend a day together.  A hospital stay is on the near-term horizon, but it seemed more distant this Saturday and Sunday as we enjoyed our time together as a family.

-- Dad

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

It was 19:00 PST when I arrived on the scene.  At a glance, I knew I was too late.  The stain was spreading across the concrete, mixing with loose change and flecks of lint.  I didn't need to call for backup.  I didn't even need a forensic team.  The cause of the stain was obvious:  an overloaded washing machine.

Suspects were slim.  [Insert gausy flashback lens and harp scales.]

Gabriel and I had been playing Harry Potter in his room when I had realized his clothes hamper was full.  He was Harry Potter; I, Sirius Black.  As he cast the Patronus charm, warding off Dementors, I lugged the full hamper to the garage.  Harry helped me load, but quickly got distracted by more Bad Guys, heading back into the house.  I finished loading the washer, added the All Free & Clear detergent (the only thing that doesn't make Hannah break out), pressed the buttons for an extra spin, and started the machine.

[Reverse gausy flashback.  Focus back on Dad in garage, present time] 

Gulp!  I was the culprit.  Still, I wondered why the machine was bubbling suds from the overfill hose and leaking across the garage floor like a movie bloodstain (albiet soapy & clear).

"Janette, can you come here a sec?"

Janette reluctantly abandoned her book.  Judging by the fifteen or so pages to go toward the end, I imagined she wasn't thrilled with the interruption, but I showed her the sudsy tube coming out of the wall.

"Can we call someone on this?  Doesn't seem like it should be happening."

Janette wears the tool belt in this family.  She pushed at the wall, looking for give - something that might indicate bigger problems.  Wordlessly, she retreated to the house.

"Seems kind of bad - we should call someone.  Snake it or something.  Maybe talk to my dad about looking at it."  I chased her back in.  She returned to her reading.  "You know, we don't want dry rot or anything in the wall."

Janette peeked up from her book.  "There's nothing I can do about it right now."  Her eyes glided back down.

"Dry rot," I mentioned again.  She bobbed up from the book and back down.  "Dry rot?" I teased.

"What would you like me to do about it?" she asked.

"Um, obsess with me?" I grinned.

She returned to her book.

Well, Janette was right.  The case wasn't going to be solved tonight.  Now I was just teasing.  Still:  dry rot would be bad, right?

-- Dad 

Posted by Dad at 08:48 PM | Permalink | Comments (0) | TrackBacks (0)

"I don't want to die," Gabriel sobbed.

It was late.  I was standing next to Gabriel's elevated bed.  I hung my head for a moment, considering

1. Was this the latest-and-greatest escalation in the I-don't-want-to-go-to-sleep wars?
2. If not, and he did seem to be taking this quite seriously, what had prompted this line of thinking?

A friend's hamster died recently.  That may have generated some additional questions, but Gabriel has been well acquainted with the concept of death, albiet fictional, for awhile.

Halloween is a huge holiday at our house.  Our humor tends to run a little dry and macabre at times.

Yes, Gabriel has seen Star Wars and Harry Potter, but he has also watched Bambi's mom die, Anastasia's family extinguished, and other "kids" fare that ended poorly for one or more characters.  I wasn't sure that that was the main issue, anyway.

My theory has always been that having grown-up challenges early in life could prompt this line of thinking.  I wondered if all the hospital time with Hannah, the pervasive equipment, nurses, doctors was connecting up for Gabriel now.

"Gabriel, I think you'll be alive for a long time."

"But I don't want you to die either."

"Well, okay.  You know that death is just part of life, right?"

"Yeah."

"The best thing we can do is eat right, exercise, and take care of ourselves.  Maybe we should focus on the things we can control.  We can think about things that make us happy."

I was feeling my way across a darkened road.  On a unicycle.  In the rain.  I wanted to be honest, but give Gabriel a path to think about things he had some power over.

I remembered having these same thoughts and questions as a child - even a young child.  The worst part was the lack of control.  Since my childhood reflections on death often coincided with severe asthma attacks, the powerlessness seemed amplified.

In addition, we're Jewish.  On death, Judiasm doesn't offer easy answers:  no promise of heaven, etc..  The focus is firmly on here and now:  what can we do to make the world a better place, help others, just because it's the right thing to do.

We were also raised to ask questions.  Lots of questions.  Gabriel seemed to have the hang of that.

"Will [insert family member] die?" he asked.

"Eventually, yes.  But let's focus on the things we can control.  What happened today that made you happy?"

Slowly, we veered off the death topic.  Gabriel seemed to embrace the things-he-could-control line of thinking.  I eventually thanked him for his questions, kissed his forehead, and wished him good night. 

He fell asleep not long after that. 

-- Dad 

Posted by Dad at 09:13 PM | Permalink | Comments (2) | TrackBacks (0)

"Super Baby, Super Baby!" Gabriel screamed this loud in a mock baby voice with a low grain whine component over and over again.

I'm starting to wince. Whining drives me crazy and the notes he is hitting are sending hair straight out on my neck.

I don't like this behavior. Yes, I know imagining to be something else is a normal part of his age. Why doesn't he ever pretend to be a soft spoken being. Yeah, like a monotone teacher or a soft spoken computer programmer. His puppies and especially his kittys turn into these constant whines.

I remind him he just needs to ask for attention. It's been about an hour. I start trying to divert and get to a more direct tactic. "Gabriel can you decrease the volume."

He tries for a minute.

I don't enjoy playing babies I've had more than enough of baby care in real life. I try to encourage but try to get myself out of the game.

I want to go back to the dragon party from yesterday.

Aargh here comes Super Baby again.

HELP I'm drowning in Babies

Hannah is just happily trying to get the Dragons from yesterday and chew on them.

Posted by parents at 09:26 AM | Permalink | Comments (0) | TrackBacks (0)

Hannah sat up by herself today!

--Mom

Posted by parents at 10:45 PM | Permalink | Comments (2) | TrackBacks (0)

Today Gabriel and I went for a quick outing to check the pharmacy for a prescription for Hannah. They did not have the confirmation yet from the doc but the pharmacy was next to Jo-Ann Fabrics. I have a weak spot for craft stores. I left it up to Gabriel.

"I know I said we were just going to the pharmacy and grocery store but do you want to stop at the craft store?" He wanted to get back to playing Harry Potter and The Goblet of Fire Game on the X-box we were playing together before lunch.

"Yeah, Mom, let’s check out the store maybe they have Aqua Dots!"

When we parked, there was also a tent sale for camping supplies from the sports store next store. He actually suggested we go there too. Since I had been stuck at home for a few days that sounded great. We walked the tent and came back to the sidewalk that had big pillars. He climbed up on a ledge and scaled across the brick face like a professional rock climber. I was impressed. I took a picture and plan to eventually doctor it up in Adobe PhotoShop to look like he is on a multistory building…. Perhaps with a spidey costume on. Another dream book entry possibly.

We made it into the store and I picked up a new sketchbook, a pack of children’s watercolor brushes and tape. I never have enough tape; I lose them through out the house.

We then went to the children’s craft area. We were looking around. Suddenly the end of one of the long shelves made out of particleboard fell on top of Gabriel. I was like 5 steps away and could not reach him in time. He screamed. I looked him over as I pulled the board off him. I sat next to him on the floor and held him why I looked for someone who worked there to come over. He eventually stopped screaming. A good sign. I asked him to walk. No winces, he started jumping. By this point a shop person was there and realized the board next to one that had fell and was also loose. She removed it.

I looked at her and said "Let’s just file a report. I’m sure everything is fine but you never know."

Tonight he was running around a fountain and scaling rocks why he jumped between them. Yeah, I’m pretty sure everything is OK for my little adventurer.

--Mom

Posted by parents at 10:25 PM | Permalink | Comments (1) | TrackBacks (0)

If you want to get a wonderful perspective on the world of nursing (or even just visit our professional friends for awhile - they are a big part of our family's life), take a look at Change of Shift (vol 2, #3). 

Janette's Machine Mambo is one of the posts featured (as Shamrock green in the pantheon of crayon colors).  I'm off to read for a bit myself.

-- Dad

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

Dinner last night was a challenge. I hadn’t grocery shopped so all I had in the house was a pound of ground turkey. Last week we had already done spaghetti and soft tacos I try not to those the same week. So I thought turkey burgers but we were out of bread and buns. I scanned the fridge and found a Pillsbury tube of biscuits. I had an idea mini turkey burgers.

We had raw spinach for our vegetable and Viola I made dinner.

Gabriel was not happy with it and turned dinner into a grueling experience. Robert said he wouldn’t mind going to the grocery store. So I gave him a list. Gabriel, after several time outs, went with him.

Hannah and I hung out while I read the new Harry Potter book. When Daddy and Gabriel returned my son brought me a planted bouquet of white Daisies. I was touched and thanked him profusely.

He spent the next couple hours when he should have been in bed following me room to room with them.

"Mommy where are you flowers?"

--Mom

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

See Dad write.  Write, Dad, write.

See bills and laptop work.  Avoid, Dad:  procrastinate.

See Mom read in the bedroom.  Read, Mom, read. 

Hear Gabriel play in his bedroom.  Lay down, Gabriel, lay down.

Listen to Hannah's compressor next door.  Relax, Hannah, sleep. 

See bed, Dad.  Sleep, Dad, sleep. 

(Set the alarm early, Dad, and pretend you'll work, exercise, and pay bills then.)

Good night.

-- Dad 

P.S.  The main reason I can sleep?  I finished Harry Potter on Sunday afternoon.  Thanks, Janette, for first crack at the book! 

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

The timeline goes like this:

• Thursday evening:  Hannah is released from the hospital.  Follow-up in three weeks or so for another procedure unless Hannah starts a fever back up, gets a tender abdomen, or starts moving away from her typical behavior baseline.
  
• Friday:  Hannah is enjoying her time at home, playing with the Bee and chatting up a storm.
• Saturday morning:  We all head out to visit Bubbie and Zadie's new house.  As I'm getting ready to take Hannah out of the car, I notice a river of green goop dripping from her nose.

Ah yes, the Saturday Goop.  Two-and-a-half days out of the hosptial, and Hannah has a cold:  a nasally, thick, goopy cold.  Throughout the weekend, she continues to play mostly like herself, with a little more sleep, but the goop flows and flows.

Janette and I are wondering if this will remain just a cold or develop into something else.  Particularly given Hannah's body's propensity for things like psedomonus and the like, we're hoping things will stay pretty minor.  We're placing side bets on whether or not we'll manage to make it three-plus weeks before the next hospitalization/procedure, but we're happy to report no fever.  Yet.  And the goop seems to be tapering off just a bit.

As a backup, though, I've cancelled outside projects/meetings this week, both to catch up on missed work and to avoid last minute changes should the goop turn to something else.  And, no, I didn't take a picture of Hannah's goopy nose for the blog.  Yeck.   So here's a recent picture instead:

-- Dad

Posted by Dad at 09:41 PM | Permalink | Comments (2) | TrackBacks (0)

"I HATE turkey!  It made it a BAD DAY!"

This is what I heard in-between gut wrenching cries and sobs from Gabriel's room.  He had been banished there after a long, unproductive dinner.  Janette had made these cute, Castle-like turkey burgers:  an ingenious dinner between grocery trips.  Gabriel had gone from "Ew, I don't like that" prior to the meal, to stall tactics A-Z, to playing with Hannah's hair, to kicking Hannah's chair's footrest, to some kind of blow-up-I-can't-remember-now that ended in an extended time out.

And now it was the turkey's fault.

I stood outside his room, taking full advantage of his need to externalize dialogue, trying to get some sense of where he was coming from (yes, spying - but with good intensions).  At first, I thought it was educational ("I tried it!  I really tried it!").  Maybe he had a point.  I had initially asked him to try it, to eat one burger.  Then his rationale quickly turned to finding a scapegoat.  "I hate it!  I hate turkey!  It made it a bad day!"

That's when I knocked and came in.  

"Gabriel, did you want to talk about this?  Did you want to talk about dinner, about the turkey and your behavior?"

Gabriel had his head covered in an afghan, his monologue on pause.  He peeked out and nodded.

"Tell me about the turkey, Gabriel."

"I didn't like it?" he quietly tested the waters.

"Did the turkey make bad decisions at the dinner table or did you?"

That seemed to stump him momentarily.  We had a brief discussion about who makes decisions: the dead turkey-burger or the live little boy in front of me. 

"I think I left the tv on in your room, Dad."

"Let's not change the subject.  We need to finish this discussion [Dad:  a lifelong pet peave of mine:  not finishing the discussion].  Why don't you think about it some more, Gabriel, and I'll be back in five minutes to talk about this some more."

I returned in about five minutes, and Gabriel seemed more composed.  He sat up more quickly.

"What did we learn, Gabriel?"

"I can make decisions."

"Good.  You make lots of good decisions, too, but tonight you made some poor choices.  Can you think of what they were?"

So we talked.  Gabriel had had enough time to calm down and either think through things or parrot the right responses back at me.  In the end, he seemed to get the gist of the conversation (take responsibility & don't lie).  In the end, he lost dessert, tv time, and other privleges, but he got to stay up rather than go to bed right then and there.  He also got to accompany me to go to the grocery store (admittedly, this was more for Mom:  she's really working to finish the new Harry Potter....).

I asked him again tonight what we learned.  "I'm in control of my body," he replied.

I ruffled his hair, celebrating a dead turkey given a late reprieve and a little boy that might be inching toward an understanding of personal responsibility.

-- Dad 

Posted by Dad at 08:58 PM | Permalink | Comments (2) | TrackBacks (0)

"Dad!" Gabriel shouted.  "Look another time tunnel!  We're going back to the future!"

I sighed.  Gabriel had been declaring a time tunnel at every bridge and signpost.  The freeway drive to Hannah's hospital was about a half-hour from our house.  That's a lot of time travel.

"Gabriel, can we go back in the past?" I suggested.  A break in the routine seemed in order.

"Sure!"

"Okay," I pantomimed, "Now I have a horse, and I'm driving a carriage.  Nice horsey!"  I reached out one hand to pet the mane, keeping my other hand on the wheel.  Gabriel made clip-clop noises. 

We tipped our hats to the imaginary ladies.  "Good morning, ma'am.  Sir."

"Look - another time tunnel, Dad!"  Suddenly, we were back in the future.  Our horses transformed into robot dogs and our carriage into rocket cars.  Just as suddenly, we flipped back to horses.  The interchanges, signs, and bridges were coming fast and furious as we neared the hosptial.

Finally, we made it to the hospital parking lot.  The parking lot proved to be yet another time tunnel.  However, as we disembarked from our ship and walked toward the hosptial doors, Gabriel noted, "Dad, the hospital is the real world."

"Yes," I agreed with him.  "It is."

-- Dad 

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

Tomorrow, our copy arrive via Amazon.com; tonight, we celebrated Potter's Eve with a brief visit to the local B&N. 

I made the suggestion after dinner at my brother's.  We already had everyone in the car, all the necessary equipment for Hannah:  why not go see the costumes and mayhem? 

Circling the parking lot several times, looking for a parking spot, we pointed out the black, wizard-cloaked masses, the Quiddich players clutching broomsticks, the occassional Haggrid-bearded giant.  Gabriel looked and gawked appropriately.  Hannah was just happy to be out, I think.

So we wandered the B&N.  B&N put on a great show, really.  They had an owl coloring station, a display on the different kinds of owls in the "Real World," a wand-making station, and boxes and boxes of books behind the counter, still sealed.  The staff managed their stations, and customers wandered the store, following black tape from station to station.  Pretty cool & well executed.

I got my Starbucks coffee (tripple shot carmel dolce latte) and checked back in with Janette and the kids in the children's section.  All I had to say was "Whenever you're ready..." and Janette was ready to pack up and leave.  Still, the adventure of seeing everyone in costume was fun.  Janette, of course, purchased a book, a tactile flash card set for Hannah, and this Golden Snitch for Gabriel.

Posted by Dad at 10:49 PM | Permalink | Comments (0) | TrackBacks (0)

It seems like weeks have happened since yesterday. Hannah had her follow up ultra sound and appointment with the Docs yesterday.

I bundled Hannah and her nurse off to school for her second day of summer preschool. When they got home I loaded up the car. Robert’s father picked up Gabriel for the rest of the day. We headed to Robert’s work to pick up Robert and went to the appointments. These three sentences don’t cover all the work they involve but that would be too tedious to read.

I actually manage to get us to the diagnostic office early but there was one problem some kind of weird stomach bug hit me. I am glad that Robert was with us because I spent the next 2 to 3 hours rushing out of whatever room we were in to take care of my stomach about every 5 to 10 minutes.

The ultra sound showed that the abscesses the Docs had drained two weeks ago were and are still there. They don’t seem to be that much smaller. Meanwhile Hannah has started having cyclic low-grade fevers we have started to track the past couple days. So they sent us to the Lab for CBC blood work up.

We went to the Docs office. The surgeon she was suppose to see was in the middle of an emergency surgery. He was literally up to his elbows in someone. So the Resident interns were sent back and forth on relay missions with questions on Hannah. Since he couldn’t actually see her.

They wanted to admit her. Hannah was acting very healthy. I hadn’t planned on an overnight in the hospital. So, Robert and I verified logistics with them. I tried to talk them into letting me take her home and admitting her today. It was no dice; we were in the realm of the radiologists. To get her in line for the CAT scan she needed to be admitted or it would be a month before it could happen. Since they were imaging the abdomen and going to sedate her they wanted her stomach empty.

She had already been kept from food for over eight hours for the ultra sound. At least in the hospital they could replace her fluids with an IV drip. She was admitted and Robert and Hannah’s Day nurse headed for home.

Robert came back a couple hours later with our hospital survivor supplies and clean clothes. I had found something to stop my abdominal pain in the pharmacy but I still needed a change of clothes. Robert also brought to the hospital Gabriel and dinner curtsy of my wonderful mother in law.

The thing about being in the hospital that is mind numbing is that it seems to be a constant holding pattern. The nurse tried but couldn’t get a definite answer from the radiology department about when everything would be happening. In the end when I had given up on her coming home today and had drove home with Gabriel, Robert called to let me know she was coming home today.

So we are all tired and back home. No real answers. They have eliminated some of their ideas and replaced them with more questions. We are going to be scheduling a follow up procedure where they go in with a scope. We are all aiming for August unless Hannah heads down the infection road again.

--Mom

Posted by parents at 12:01 AM | Permalink | Comments (0) | TrackBacks (0)

Jacqui over at Terrible Palsy has tagged me to reveal Eight Random Thoughts About Me.  BTW, if you haven't checked out her blog yet, I encourage you to!

1. A VP I worked for try to get me to stay with the company with the following speech, "Right now, you're a big fish in a little pond.  If you move on, you'll be a small fish in a big pond."  I was leaving the music retail industry (now deceased) and moving on to a hectic 2-plus years at Amazon.com.
2. I own about 2,000 LPs and 12" vinyl records.  Yes, that kind of vinyl.  Almost all of it is from the late 70s - mid 80s period.  Except for the DJ collections I purchased.  Really, I don't listen to the disco stuff... much.
3. The aftermath of brain surgery can be fun - particularly if your behavior center was damaged and you are a teenager.  Just ask my parents - they'll confirm.
4. I enjoy scaring my son - playfully, of course.  At first, he finds it funny, but when I disappear, he can't find me, and he starts looking for me, expecting me to jump out of some unseen corner:  not so funny.  At that point... I still think it's fun.
5. I used to write lots of incomplete short stories and novels - most of them horror (see #4 above).  Once I wrote one called "Vanity's Mirror," starring my soon to be ex-girlfriend.  The main character spends so much time looking in the mirror and obssessing about herself, she gets trapped permanently there.  Hey, didn't say it was original, but it certainly was spiteful!
   
6. I used to be a workaholic:  my longest day was about 48 hours (back-to-back retail inventory, helping other stores out).  I'm cured now, though
7. First concert:  Yes at Irvine Ampitheatre in Southern California.  Sat in the grass.  That had many, multiple meanings at that show.
8. I am not a perfectionist; I am a completest.

I should be tagging more people, but I'm gonna whimp out on that one.  If you're reading this and feel inspired, feel free to keep the confessions coming!

-- Dad 

Posted by Dad at 10:17 PM | Permalink | Comments (0) | TrackBacks (0)

A movie around our house that was popular for awhile was Shark Boy & Lava Girl. A feature of that movie that has stayed with us is the dream book. In the movie the main character has a dream book where he documents his imaginary friends lives. Or the stories he makes up in his head.

I am an artist so I have sketchbooks that I fill with similar type things. One day Gabriel asked me to draw him as a Jedi fighting General Grievous from Star Wars. Sometimes I need assignments to get me going. So after doing my assigned work I did this fun project for my son.

He loved it. I kept finding my sketchbook all over the place and he would study the other pictures to. The problem was he was somewhere between 3 and four at the time and he is not gentle with books. He likes to sleep with them. I had to keep rescuing it from his bed. Since he kept calling my sketchbook his dream book I took the hint.

I found one of those composition books a person can get at school supply areas of the stores. I keep several around the house for brain fiction burping emergencies. I labeled it Gabriel’s book of dreams and copied pictures I drew for him of him having amazing adventures.

I added that photograph I made of him on the broom this week and today I added a drawing of him as Mario from the video game I drew upon his request about a month ago. I took some time to color it today. Both Gabriel and Hannah watched me do this. Gabriel wants me to add Daddy as Luigi. I am putting that on my to do list in my mind. I keep trying to get him or Hannah to color the pictures too, neither is interested in art so far but they like to watch me.

I need to start working on one for Hannah. I want to do one of her dancing, playing soccer, and sword fighting. I should do one with her on stage in a rock band as the lead guitarist. She has a cameo in Gabriel’s Jedi fighter page. She is in the pink one of course.

--Mom

www.bachpro.com is my online portfolio if you want to check it out.

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

"Mind if I go get my hair cut tonight?"

I had just walked in the door, work still unfurling slowly (but never completely) from my mind.  The transition was abrupt, and I answered reflexively, "I don't know if that will work for me."  I paused.  A few more decimals shook free.  "Um, let's see after dinner - once I settle in."

Janette agreed, and we enjoyed the chicken she had prepared in a chinese soy and ginger sauce.  Gabriel had his plain - no sauce; Hannah, her Pediasure.  Hannah has been a handful at the table lately, demanding to be put down as soon as she joins us.  We've pushed anyway (that's why it's called a family dinner), but tonight, neither Janette nor I felt like fighting.  Hannah played happily away on the floor.  Janette included her in the conversation anyway from the table.

By the time dinner had finished, I said, "Sounds fine."

And Janette cut a bee-line to the door.

Gabriel wanted to watch his new Mario Bros. 3 DVD (the entire Saturday morning series for just $20   - too much, believe me), so I set him up in our bedroom, and Hannah and I hunkered down for some play, singing, and watching her 7pm game shows.  After several pick-me-up, put-me-down sequential demands from The Princess, I set her down on the floor. 

-- Dad

Posted by Dad at 08:37 PM | Permalink | Comments (1) | TrackBacks (0)

The kids didn't seem to mind.  Hannah got some singing and Babbling Bee time; Gabriel and I watched Fantastic Four this morning (before he erected the chair-tent-city pictured). 

Everything seems to be in statis for a bit.  Hannah's followup ultrasound is Wednesday this week, and I'm still sleeping off the last hospital bender.  Hoping all is well in the ultrasound, and we can return to moving forward on her off-the-ventilator progress, post-illness.

-- Dad 

Posted by Dad at 08:23 PM | Permalink | Comments (0) | TrackBacks (0)

Today was Sunday, as a family we try to get ourselves all out together. So we loaded up Gabriel and Hannah in the car. Then we went to a local strip mall. We only needed to go in the pharmacy but, we decided walking the strip mall would be a good walk.

Our first stop was the pharmacy, I wanted to get our one errand done before we got tired doing other things. So we wondered round the store as I collected various items. The thing about Hannah is she is three. Toddlers even those who can't toddle don't like to sit still so while I went to check out, Daddy took the kids to walk out front. I happened to be holding Hannah's feeding syringe.

OK, this probably requires explanation. Hannah can not eat by mouth yet. So she has a g-tube. When we go out I choose not to bring her feeding pump. I can manually feed her using a syringe (there is no needle) full of formula. She can't have it all at once so every 5 minutes or so I give her a squirt of about 5cc of formula in her g-tube. There is no great place to set the syringe so I'm usually holding it when she is in the middle of a feed and we are out and about.

So I go up to the register set my three items down and my purse with the syringe next to it. Robert is outside walking the kids. The women begins to ring up the order and pauses to ask me if she needs to ring up the syringe. "No, my daughter has a feeding tube. I'm just in the middle of feeding her."

She kind of pales and looks disoriented and starts bagging up my items "Do you want a bag for that?" She points to the syringe.

"No."

Silence with confusion and disappointment on her face.

I say "If I put it in a bag it will just leak every where."

No response.

I shrug and walk out of the store. If I'd had a bottle, no one would of asked me that question. Its fresh formula in a plastic container with a different delivery system. People can be really squeamish sometimes.

--Mom

Posted by parents at 07:59 PM | Permalink | Comments (1) | TrackBacks (0)

Nurses play a big part in our family's life because Hannah has in-home nursing care through Oregon's MFCU program.  Hannah's nurses have been instrumental in supporting Hannah over the last three years.  Their dedication to her care has impressed me many times.

With that in mind, I went searching the blog community for nursing sites and found a wonderful blog community at Change of Shift.  Kim at Change of Shift has added us to the community (thanks!), and we are busily exploring everyone else's sites.  I'm sure you'll see some quotes here from a few shortly.  In the meantime, I encourage you to check out the current issue of Change of Shift when you get the chance.

-- Dad 

Posted by Dad at 08:05 PM | Permalink | Comments (0) | TrackBacks (0)

As I sit in the afterglow of a great rendition of a fantasy book on the big screen, I ponder my attraction to the genre. Specifically over the past years the high fantasy has been shoved to the side in my reading arsenal and I'm drawn to the new fantasy following in Anne Rices footsteps where the real meets the supernatural. I've always loved them, they are not horror, they just have character development of characters from horror. There use to be a couple here and there, now there is a complete explosion of them in the marketplace.

Don't get me wrong I still find and read the great High Fantasy book but I''m reading more of the altered reality type books. I use to just enjoy the escape from reality now it seems to be more personnel. I always thought I was pretty grounded before but, my daughter specifically brought reality home to me. I and my husband and like most characters in these books share an altered reality. I think all parents experience this when going from being without children to having children but, us parents of medically involved children have a pronounce change. It is hard for others to relate when you have experienced being home alone with your vent dependent child who manages to pull out the trach tube and g-tube at the same time.

It comes down to doing what all the heroes in the books have to do. You live in the moment suspend some of your society beliefs and make things happen. You feel the fear and function. I think that's why I particularly drawn to those types of books.

--Mom

Currently I'm reading The Atrocity Archives by Charles Stross. It is pretty much a spy novel where the anti-terrorism involves preventing Demon summoning with applied advance mathematics on computers. I'm hooked and itching to dive back in.

My favorite of all time in this genre type is the Thursday Next series by Jasper Fforde. This functions on so many levels I don't want to ruin it for any potential readers, but here is a line that may hook you. In the third book there is a group therapy session for the minor and major characters of Wuthering Heights. Imagine pop psychology getting a hold of Heathclift and Cathryn.

Some other must reads:

 Weather Warden books by Rachel Caine

Rachel Morgan books by Kim Harrison

Kitty Norvell books by Carrie Vaughn

Southern Vampire Mysteries by Charlaine Harris

Diana Tregarde Investigations by Mercedes Lackey

Sometimes I wonder if all of these are written by the same author except with different pen names.

Posted by parents at 10:29 PM | Permalink | Comments (0) | TrackBacks (0)

The public media marketing guru's are affecting my son well and sigh me too. The new Harry Potter movie Order of the Phoenix came out in wide release today. Our house has gone Pottie in the head.

Gabriel yes is only 5 and yes he has seen the already released previous movies. Robert and I went down a slippery slope starting with the Chamber of Secrets Movie. Gabriel caught me watching it one day and saw the basilisk he thought it was a dragon and wanted to see the whole movie. So that weekend I sat down with him and watched the first one. We talked the whole time. Stuff about friendship what makes a person bad and what makes a person good. We talked about how to treat friends and what was important in life. I loved it. We eventually worked through all the movies. This of course opened up him watching Star Wars and Charlie in the Chocolate Factory. Interestingly he use to wake up normally with night terrors, now the nightmare have almost disappeared with him watching these scary movies.

Bizarre

Anyways, today Gabriel and I played a great game of Hogwarts. He asked for the broom and I took a yellow whiffle ball. We called it the snitch. I would hide it around the house and he would find it we would cheer because he won at quiddich. He would give me a soft ball and we pretend it was a bludger and have me pretend to bounce it off him as he used one of his plastic swords as a wand to defend. Then he would take a tennis ball and call it the quaffle and try to make baskets.

He then mentioned it was time for potions class. I was in the middle of making grilled cheese. Hannah was sitting on the kitchen floor listening to the radio and chewing on a plastic sword as I pulled out clear plastic cups where I put colored water, vinegar and baking soda on a tray and set it at the table for Gabriel to mix potions. He had fun we went through new ingredients about 7 times. I had to curb his enthusiasm to get Hannah's feed started.

Gabriel mentioned Herbology after I started cleaning up for lunch and removing the potion play set and I remembered we had bought flower seeds. So while Daddy was home for lunch I snuck out and set up some dirt for us to do some planting.

Currently Hannah is napping and Gabriel and I are watching the Sorcerous Stone. I think we will do a Potter Marathon. I have bought my ticket for tonight with Fandango. I am going early enough where Robert should be able to go after me. After we both see it we will decide if we take him. He has never seen this violent type of show on the big screen only on our family TV. We do have scruples sometimes.

Posted by parents at 08:45 PM | Permalink | Comments (0) | TrackBacks (0)

• Fall:  We have seasons!  Trees turn a bright orange, bleed crimson stem-to-tip, then shed for winter.  The air cools, the skies turn dark earlier, and the rain begins.  Halloween heralds crisp nights and warm soup dinners.
• Winter:  Ocassionally, it snows.  The trees are bare.  The rain settles in for a long stay.  December (sometimes November) brings Chanukah which delights the kids.  The craft faire at Saturday Market goes full steam ahead, and we head down there as often as we can to walk around and enjoy the bands warming the cold air.
•  Spring:  We turn the corner away from the coldest points of winter and begin to see the sun again.  The rain stays with us, though, keeping the days cool, but not cold.  The grass starts to grow - then it gets out of hand:  let the mowing begin
  
• Summer:  Starts late here.  Spring seems to linger into early June.  July starts the warm up, and August-September bring our 90(f)+ and even 100(f)+ days.  Many people around us cheer with the bright blue skies (not the pale blue, smoggy skies I grew up with - yet, anyway), but I hunker down in the air conditioned house and wait for the heat to pass.

Unfortunately, we're in summer.  It seems to be starting early this year, and today was our first 100(f)+ day.  Janette & the kids stayed mostly indoors today, most lights out, conserving energy for the A/C running full blast to keep the house tolerable.  Just waiting for a power outage to make us miserable (happens 2-3 times a year, it seems).  With all of Hannah's equipment, we get a little more concerned & prepared (batteries fully charged).

Looking forward to a weekend cool down.  And to Fall down the road:  coming soon, I hope?

-- Dad 

Posted by Dad at 09:47 PM | Permalink | Comments (0) | TrackBacks (0)

Today began with a list of places to call. I’ve learned over the past few years to call immediately on any medical slash school thing. When Hannah’s in the hospital with no definite date of coming out, I have to pass the life of Limbo on.

The first order of the day was scheduling Hannah’s follow up ultrasound and appointment. This was easier than usual; I already had a nurse scheduled on that day. I then told the receptionist to fax me the request for the ultrasound because no matter how many times they call and fax the diagnostic center, that information is usually totally lost. Instead of asking me about it I end up in an endless queue.

Next was the government school program Hannah is in. Summer session starts tomorrow. We had everything set up for twice a week and we received a call that they need another planning session to discuss the two days a week. Hmmm this will play havoc with my nursing schedule. The number I had was disconnected. Finding the number became problematic. I spent about a half-hour going over our Dex guide and could not find the government section. The part labeled government and business was all commercial businesses. If I wanted box seating for a play I could find that chart, but local government numbers nope.

Frustrated I called our family friends who are in the middle of moving and mentioned the problem I was having. They suggested using Yahoo.

I called Hannah’s physical therapy office and got her reinstated on their schedule. They could fit her in today. Wow!

I tried Yahoo. I got an agency with a similar name but they deal with juvenile delinquents. They were helpful though and looked it up through their Government database and gave me a usable number. Yay! I got the answer machine of someone, who should have some idea of what I’m talking about and left them a detailed yet brief message. Then I needed to call the transportation department for Hannah’s bus and they thankfully left their number. I confirmed she was out of the hospital and would be starting school next week instead of tomorrow.

I then called our nursing agency. We have been in touch through the whole hospitalization, I tried to let them know as soon as I knew if we not coming home. So they could let the nurses scheduled at our house know. Well since, we were not home for a week I thought we might have some left over nursing hours we could reapply to the rest of the month. In the politics of government healthcare there has come a little puzzle. There has been a cost of living increase raise to the hourly pay for nurses, which is wonderful I think they haven’t had one in at least 3 to 5 years. The problem is the budget for the nursing hours has not risen either so there is not enough money to support everyone at the new rate. Needless to say we will probably not get to reapply nursing shifts missed. Oh well.

I still need to call my Dad and my Mother and give them heads up but the children had enough Mommy on the phone time.

Tomorrow is another day.

--Mom

Posted by parents at 11:01 PM | Permalink | Comments (0) | TrackBacks (0)

Hannah and I spent the post-work night together, playing on the floor, watching her shows on tv, singing, and dancing.  Suffice to say, she is feeling better, and we had a fantastic time together.  Janette and I, on the other hand, are still recovering from last week.

Me, I'm exhausted.  The hopsital shifts of 3-4 hours of broken sleep each night alternating with 6-7 hours of worry sleep at home have caught up with me.  Last night, I slept 10 hours, counting an earlier nap, but still woke with some difficulty this morning.

I think the hardest thing right now is that, somewhere, a new diagnosis is waiting to pounce.  Janette scheduled the follow-up abdominal ultrasound today, and it will take place in about ten days.  Provided Hannah continues to do well post-hosptialization, that ultrasound will be our next opportunity to figure out what is going on.  We've already received our Masters-Thru-Experience in Hannah RT, and I'm sure we'll master whatever else her body has going on. 

Knowing that doesn't necessarily make it any easier, though.  For us parents, we kind of thought we were on the offramp:  extending her off-the-ventilator time, progressing beyond her October 2006 baseline.  Coming off the vent prior to the late fall/early winter (bronchitis season - yuck) seemed possible. 

Hannah herself is sold on the idea that the fewer tubes, the better!  She enjoys rolling and seems to be standing better with some support.  I imagine crawling or walking may be in the not-so-distant future.

But now the new diagnosis is lurking somewhere.  Hopefully, we'll tame it quickly, and it will be relatively mild and/or correctable.  We'll see soon (I hope - one doctor suggested we might never figure out the cause of the abcesses), but the waiting is going to drive me nuts in the meantime.

-- Dad    

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

Gabriel is our Little Man of Leisure.  Particularly on a return-to-work Monday, I envied the following:

Posted by Dad at 09:41 PM | Permalink | Comments (0) | TrackBacks (0)

Just a quick note that The Carnival of Family Life included us in their most recent addition.  Very cool & much appreciated.  I am currently browsing through the many entries about parenting and family life and finding several keepers.  I'll reference a few favorites as I read along, and I encourage you to check out the following discoveries:

The Expatriate's Kitchen:  Parenting and original recipes - a pretty cool mix.  Check out the recipe index, too, for some ideas. 

An Island Life:  Raising a family in Hawaii (and one of the nicest web/blog designs I've come across so far).  Also a great excuse to reminisce about Hawaii.  Janette lived there for several years when her dad was first stationed on Oahu, and I visited her dad there decades later when he was CO of the base.  Let's just say I will never forget sipping perfectly brewed Kona coffee while watching the sunset at the beach.  Sigh.

Pediascribe:  Both a blog and a very professionally-assembled podcast (Pediacast) about families, kids, and related health subjects & concerns.  Sample issues:  video game impact, cuts and scrapes, and Asperger Syndrome.  Haven't listened all the way through, to be fair, but I like having something audible I can carry with me on these subjects.

Those are just a few of the blogs found so far.  Check it out for yourself if you get some time!  I also found this great collection of nursing-blog sites, Change of Shift, and I'll have more on that in the next day or two.

-- Dad

Posted by Dad at 08:53 PM | Permalink | Comments (0) | TrackBacks (0)

This morning, Gabriel requested pancakes.  Well, to be precise, his initial request was for bacon and eggs, but we had no bacon in the house.  Pancakes were a solid Plan B on his part.

As I prepared the batter (from our favorite Snoqualmie Falls mix), the family began to assemble slowly at the table.  I added mix plus cold water.  I stired with a fork (rather than a whisk - my only nod to "style").  The powdered mix blended to a thick, but pourable batter.  The pan was hot.  I was ready to make the sacrifical pancake.

The first pancake out the shute is always the sacrifical pancake.  I poured it small and round, hoping it would cook up perfectly, but knowing that it would not.  This is the pancake that tests the pan to make sure it is the right temperature.  It is the pancake that helps me reset my internal pancake timer (usually via an undercooked, batter center or an overcooked singeing of one side).  It is the pancake that gives of itself so that others may thrive.

This morning's sacrifical pancake was small, round, and slightly undercooked.  It splashed batter when I flipped it too early - bulging in the middle when I pressed.  With a little adjustment, it proved to still be edible.  More importantly, it had performed its sacrifical duty well.  The remaining pancakes improved.

Mom, Hannah, and Gabriel enjoyed the pancakes while I churned them out at the stove.  Gabriel had three or four, so he considered it a success.  Hannah enjoyed sitting at the table, but left her pancake mostly untouched.  We mugged at each other across the kitchen countertop.  She laughed as I tipped my head one way, then the next.  Her mood and overall health has improved considerably from when she left the hosptial yesterday morning.

I quickly made some scrambled eggs, then joined the family at the table for my serving of pancakes and eggs, thanking the sacrifical pancake for its contributions to a nice Sunday morning family meal.

-- Dad 

Posted by Dad at 10:01 PM | Permalink | Comments (2) | TrackBacks (0)

We all came home from the hospital today by 11:30. Poor, Robert had to go back because I forgot the power cord to Hannah’s ventilator. I was exhausted. Gabriel tried to get me to watch Digimon with him. I settled Hannah and I in the family room him. I snuggled up to Hannah and fell asleep.

He sat on top of my back and lifted my head several times. I felt it drop. I let him do this ten times before I was conscious enough to say, "Stop, Gabriel your hurting me."

"Mommy it’s not sleep time. It’s awake time."

"Gabriel, I only got like two hours of sleep last night."

"I’m sorry Mommy, it’s play time."

I let anger slip into my voice. "Gabriel, no, I’m the parent and you need to let me sleep."

"But, Mommy I want you to see this."

I looked at the clock, just in my mind I groaned. It was still two hours before I could get relief. I could barely keep my eyes open. Any movement I try to do was clumsy and unprecise. I felt like there was a weight on my head and all I wanted to do was go back to sleep.

Hannah hugged me and laughed while Gabriel insisted on another show. I realized he should eat something for lunch so I dragged myself up and wander into the kitchen. I wasn’t giving him a choice today. I found the bread, made sure it was fresh and set it up in the toaster and pulled out the peanut butter. I put something on the TV that won’t put me to sleep. I put on Between the Lions and blink at it, as the children were distracted from me.

I got Gabriel his peanut butter sandwich, which he immediately complained was not grilled cheese, which was what he wanted. "I’m sorry, Gabriel, I don’t have the energy for grilled cheese." As I cleaned up the dishes I realize peanut butter sounded good to me too. So I made myself an untoasted one. It takes far less energy.

I then sat on the floor next to Hannah while we all watched CliffHanger try to get off that cliff again.

I felt content having everyone home.

--Mom

Posted by parents at 07:43 PM | Permalink | Comments (0) | TrackBacks (0)

I've seen her in action.  Nurses that have taken care of Hannah during our six or more months of collective visits drop back by to catch up with their young Rock Star.  She smiles up at them, claps, and says, "Hi!" if her pasameer value is connected.  For someone she knows really well, she even add the little head tilt underscored with extra dimples. 

"She's grown so much!" they gush.

We, modest parents that we are, enthusiastically agree and start offering to show off Hannah and all her successes to anyone in the ward:  professional, parent, or child.

And then HIIPA crashes the party like police enforcing a noise ordinance.  "It'd be great to have you talk with other parents, but HIIPA...." or "Some of these parents are so new to the vent - it'd be great for them to know about Hannah's success, but HIIPA...."

We'll sign autographs on behalf of Hannah on HIIPA waivers, we offer.  We'd be happy to talk with other parents, too. 

No dice.  So Jannette sprang herself today on our neighbors as they left the sanctity of their HIIPA-shielded room.   She brought Hannah out of her room to chat & make a connection.  I think it went well, and our neighbors now know they can talk with us if they want to.  That's really all we wanted to say:  just say, hey, we know a little bit about what you're going through; let us know if you want to talk.

Meanwhile, tonight as I write, our little Rock Star sleeps with the occassional start and twist, probably visualizing herself on stage at Wembley, guitar in hand, ready to one-two-three-GO!

-- Dad

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