Kintropy In Action

A new disability carnival of blogs is up at Pedestrian Hostile.  This issue's theme is Simply the Best.  Give it a read when you can!

-- Dad 

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

"Do it again!" 

As far as bubblegum goes, Trident Strawberry is about as weak as one can get, but it was 4am, Janette had some in her purse, and Gabriel required amusement.  I blew another brief bubble; Gabriel clapped and ah'd like he was watching a fireworks show.

An hour-and-a-half before, Gabriel had been crying, shaking scared, and whistling noisily with each breath.  A sudden, croupy cough had woken Janette and I.  After Albuterol and some cough medicine, we had withdrawn to the shower, but his breathing looked labored.  We took him to the local ER.

By 3am, nurses had taken vitals, started some cool mist blowing by, and administered a steroid to open his lungs up further.

"Blow more bubbles.  Please?"

By 4am, Gabriel had consumed some strawberry-flavored Dippin Dots a nurse brought in.  His voice had returned.  His breathing was normal.  Gabriel, dark bags hanging beneath his eyes, was smiling and laughing.

I struggled with the two, tiny Trident pieces in my mouth.  Months ago, Gabriel and I had worked on how to blow bubbles with gum.  He had made some progress, but had to use his fingers to try to get everything in place.  He was still fascinated with my "special ability."  I managed to blow another small bubble.

"A big one!  A big one!"

With some prompting, an x-ray technician arrived, and Janette (our best visual evaluator of all things medical) and Gabriel went to take pictures.  Fifteen minutes later, they returned.

"The x-ray was fun!  I think it made me all better.  Can we go now?"

Janette and I explained that the doctor had to evaluate the x-ray, and that took awhile.  Meanwhile, I had missed my opportunity to toss the gum while Gabriel was off at x-ray.  I snapped and popped a bit more, killing time.

Forty-five minutes later, we were exiting the ER.

"That was so fun!" Gabriel beamed.  "Maybe we can come back tomorrow."

-- Dad

Posted by Dad at 08:39 PM | Permalink | Comments (0) | TrackBacks (0)

It seems the chore faeries were having too much fun with me. So one flew up to me, and, in it's high pitched voice, it asked, "Can we envite our cousin Emily Rouser to visit?"

I think I blinked as I was turning off the laptop and yawned. "Ahhhhh, sure."

I started to slip off to sleep and the fairy whispered in my ear. "Great, just remember to use her nickname: ER."

I should of bolted out of bed and demanded they all leave at once.

At two this morning, Robert and I were woke from the sound of screaming and a sound like a paperbag bag being blown up with a slight whispering, leaking echo. It shuttered through the house. Gabriel was having problems breathing. It sounded horrible. We hooked him up to a nebulizer with Albuterol. Robert held it to his mouth as I took a stethoscope and listened to his lungs. His left lung sounded pretty clear, but in his bottom right lung there was a slight squeek. We unhooked Hannah's pulse oximeter since she was doing well and breifly attached it to Gabriel. His stats weren't perfect, but they weren't bad.

He was starting to panic, so we gave him an expotorant that would stop the excessive coughing and loosen things up. That way he could catch his breath. Not being able to talk was upsetting him. We moved him to our bathroom to give him a steaming shower. His breathing seemed more labored even after the Albuterol treatment. Robert and I decided to take him to the local emergency room. We thought it might be croop, but we weren't sure. I was noticing darken circles around his eyes.

Robert and I got dressed. We all got shoes on. I asked the night nurse how long she was staying. We decided both parents could go. We told Gabriel we were taking him to the hospital. A pained look crossed his face. "I'm ok, I'm getting better. See I can talk."

"Are you worried about shots?"

"Yes"

"We are pretty sure you won't need any shots."

We lucked out. The ER was pretty empty. It still doesn't move that fast. When we checked for a fever at home, he hadn't had one. He was starting one there. They were sure it was croop, but checked it out. They started a cool mist machine going on him and gave him a steroid orally. His mood improved quickly as his voice returned and his breathing became easier.

He was given a toy puppet. And they wanted to give him an X-ray to verify it was nothing more. Robert was diagnosed with bronchitis yesturday. Hannah might have strep or staff again.

We got back home around Six in the morning.

I would like the wellness faeries to visit please. Does anyone know their call song?

--Mom

Posted by parents at 08:03 PM | Permalink | Comments (1) | TrackBacks (0)

After the week of helping out at Gabriel's school, gutter patrol, regular chores, and double duty with the kids, I thought, hey, I'm going to take it easy today. I'll work on my book. I woke this morning at 4 to the congestion snores of my son as he pushed me closer and closer to the edge of the bed. I lay there twenty minutes, when I realized sleep was not going to revisit. So, I went to our office and did some reading of blogs. After I finished Terrible Palsy's recent blog about the many people who have a hand in the raising of her son. Hannah's night nurse, J, walked into the office and sat down.

She has been with Hannah since The Beginning, and she is a trusted confidant. "Can't sleep huh? I can hear him through the walls"

I let go of the keyboard. I was in the middle of an email. I look at her. I smirk "Nope, I tried."

She gestures with her right hand on the desk. "You need to take Hannah into the dermatologist today." I argue with her and read the blog and my comments to her. Hannah's feeding pump goes off she leaves the room.

I sigh internally. Together, we decide she needs to see her pediatrician. The specialist is usually 3 to 4 weeks out. There went my relaxing day.

So this morning, I got Gabriel ready and off to the bus by 7:20. Then I finished up Hannah's morning meds. I called the pediatricians and got us a 11:50 appointment. At about 9:00, I noticed Hannah's med port off her g-tube is open and has been spilling all over the floor and her back. Yummy, nothing like sticky, partially-digested, vanilla pedisure all over oneself to start the day with.

Hannah had complaints. I got Hannah to the bathroom and on the child's potty while I cleaned the floor and started a bath going. After every bath, her trach ties need to be changed and the skin around the g-tube and trach tube need to be cleaned and dried. At least Big Big World was on to distract her. After I finished that, I took her to the family room where she began to act like she was going to sleep. I started looking at our to-go bags. Lots of stuff to check to make sure we have. I started to load the car. Hannah's breath sounds were audible across the room; she needed suctioning. At this point, she figured out that she was going out. I took her back to her room for a suction as she complained and screamed "Out, out, out!"

"We are going out, Hannah. I just need to suction you first."

While we at the office, I had to call Hannah's physical therapist and cancel for the day. We made it to the office and back with about an hour to spare before we needed to pick up Gabriel at the bus stop. I then proceeded to pick up the house, go crazy cleaning in the kitchen, and then make dinner. When that was all finished, the only pharmacy in our area that does compounding called at 5:00 PM (It's a Friday) to tell me that they can't refill a important med (one that should not be skipped) for Hannah till she has appointment with the prescribing doc. This particular med needs to be called two days in advance because of the nature of their work flow with compounds. So, a) Doctors offices are closed by 5 on Friday's and b) we only have enough for the weekend. (We called this prescription in a day ago)

I think there are creatures called Chore Faeries. When they think a person has a thought of taking the day off, they go into action making sure that is not a realistic goal.

--Mom

P.s. Disclaimer:  My kids are wonderful. I feel lucky I can get Hannah into the doctor the same day. Many on call doctors in specialist office are generous with their time.

Posted by parents at 10:19 PM | Permalink | Comments (1) | TrackBacks (0)

And what do you do?  You pee on the flag-painted fire hydrant. 

As evidenced by patriotic outlets like Fox News, this is an international incident.   

I know where this is going.  Yes, we are fighting them Over There, so they won't follow us Home.  We're making progress.  Just give it some time.

But the Enemy is cunning.  He has been home with us the entire time, wagging his tail, pretending to go, catch the ball!  catch the ball! while conspiring with his currish pack.

Soon, our dog park will be overrun.  French Poodles will lift their chins at us while lifting their legs on our Stars and Stripes.  Street mutts with matted hair and peace-sign tattoos will gather en masse on the lawns nearby.  They'll chant "Arf!  Arf!  Arf!", demeaning themselves and all those brave people that have sacrificed themselves for the flag lapel pins, truck tire flaps, and, yes, fire hydrants that bear our Nation's Symbol.

German Shepherds, fitted with helmets and riot grrrrr, will march on the unlawful assembly.  Initially, there will be chaos and a lot of yelping, but the Shepherds will restore order, honor, and dignity.

We, Hillsboro, recently chosen as one of the best places in the US to retire, will return to our cramped, newly manufactured homes, our televisions, our Starbucks, satisfied and proud.  We will sleep soundly, with the help of prescriptions, knowing that our democracy is safe once more.

-- Dad

Posted by Dad at 09:50 PM | Permalink | Comments (0) | TrackBacks (0)

"Rain is coming tonight." Robert turned the page of the paper.

I was racking my brain over things that needed to be done today. I had a nurse for Hannah and Gabriel was home. I didn’t really want to do laundry. I was getting far on illustrating for a book I’m working on. I thought hey maybe I could muscle through the laundry and keep going on the book. This statement stopped that thought process. Yes, I know it rains here in the Northwest a great deal. The thing is, today it is sunny. My house’s gutters need work. This was made abundantly clear to me last week when several birds were using the gutter outside the family room as a birdbath. I’m wincing now; as I also want to report that it sounded more like hunting prey in our gutters. My mind wandered over perhaps it was tadpoles. (Wrong time of year)

So, today became about the gutters. It was sunny and the sunny days most likely will be gone as soon as October 1rst hits. I had a nurse, no other set plans it was now or never.

I opened the doors to screens and told Gabriel he could come out and play around where ever I was. He is not suppose to bug the nurse. I went to our shed and pulled out our tall ladder. We live in a one-story ranch style house. I collected a spade and multipurpose buckets. Up I went. Gabriel came out played in the tree. On a trip down to move the ladder; I handed him his fishing pole from our shed. It had a weighted plastic fish attached for him to practice casting.

"Hey Mommy! How does the button work?"

He had the pole upside down. I turned it around and cast it to show him and the line broke and flew across the street. He went back to the tree.

I fetched the fish. I untied it from its line then took apart the spinner mechanism and fed out more line and re-setup the pole. I tried it and it worked. "Is it fixed?"

"Yes." I handed it back to him. I pulled out a clear tub and filled it with water and set it out and told him he could use that as his fishing pond.

I moved the ladder climbed back up. Scrape, Scrape, Scrape. Then I would dump the dried leaves, roof tile pebbles and nutshells into the bucket. It was filling the air and I started worrying about my eyes. So, I climbed back down and grabbed my work goggles/glasses. (My hands were in surgical gloves inside the work-gloves.) I moved the ladder, adjusted my glasses, climbed up.

"Mommy, the water is dirty. Can you clean the water?"

I look down at him. "How about you grab the pinecones and see if they sink or float?"

"Ok, can you get them for me?"

"They are all over the driveway. I think you can get them yourself. I’m cleaning the gutters."

Then there was silence except for my scraping in the metal gutter.

"Mommy, can I dump the water?"

"Sure" I was moving to the ramp section of our house trying to find the right seating for the ladder. He dumped the water and reveled in the patterns across the driveway. I marveled over the amount of stuff in my gutters.

"Mommy, can you get my slippers. My shoes are dirty."

I look down his shoes are off. "Go look yourself. Your flip-flops are in the van."

"But Mommy, I’m barefooted."

He said that like it was a problem. "You can do it." I shovel more dirt into the bucket.

He found his flip-flops. He changed his mind and disappeared into the house. I had finished the first section. There were five more sections to go. I looked at the next section. I had never gotten to it because I had always done the gutters in the rain and that section is above a shrub. There was no way to put a ladder safely there. I looked at the roof in front of me. The ladder’s top was directly below the edge of the roof. I decided it was time to climb on the roof. I made it. It was easier than I thought. I walked over to the edge and sat down. Right when I was about to start cleaning out the three inch deep of moist spongy plant matter, Gabriel comes out.

"Mom, where are you?"

I waved "Hey Gabriel, I’m up here."

"Wow, you’re on the roof. Mom, can I play Super Why on the computer?"

"Sure give me a minute to finish this section and then I’ll be down to help you."

"Awwww"

"Relax, I’ll be there shortly"

Needless to say the rest of the gutters I did from the roof with spontaneous interruptions from Gabriel. I don’t know if removing the algae encrusted slime from the back gutters was a good idea. I think we were helping create ozone. All I could think of was the primeval soup of the original oceans. The slime in the back gutters was wondrous to behold. It was green, marine plant-life looking with bubbles dotting it surface. In the sunlight the green glistened in multifaceted colors. I think it could have sustained tadpoles. (I did find a few seedlings)

--Mom

Posted by parents at 10:00 PM | Permalink | Comments (1) | TrackBacks (0)

Today marked the beginning of my volunteering in my son’s kindergarten class. One teacher. 23 students. The goal: to get everyone up to first grade reading level by the end of the year. The class needs more then one adult.

My job today was to help the flow of educational busy-work while the teacher, Mrs. G, took each skill level set and worked with them in three different groups. It was fun, invigorating, and worrisome. Kindergartners are not self-starters or independent workers. I think Mrs. G has done a great job of keeping them engaged and keeping with the skill level she is trying to teach.

A great deal of the projects involved scissors. Between juggling the papers and whose book was whose, I had to deal with the safety issue of scissors. Kindergartners get carried away with gesturing when they talk. They don’t notice what is in their hands. One girl kept wanting to show me if she put her fingers behind the blade she almost cut herself. I was trying to explain that, yeah, that would happen if she would keep doing it. Meanwhile, the professional teacher’s helper took her scissors away. I was so glad for her to help in navigation of the minefield.

Note: No kids were hurt or maimed in my stint as teacher aid. (I’m even going back next week)

--Mom

Posted by parents at 09:17 PM | Permalink | Comments (2) | TrackBacks (0)

Before I was a parent, I heard about a show called Veggie Tales. When I found out it was a Christian show, I wrinkled my nose at the thought of some right wing agenda cartoon. I was guilty of religious prejudice. Sight-unseen, I had judged the show unwatchable.

When Hannah came home, we spent a great deal of time in her room. We didn't have a TV in her room then. We had the XM radio though. I am addicted to the XM kids channel. They play an assortment of songs including the Veggie Tales songs. They are kind of catchy. One of Hannah's nurses brought a Veggie Tale DVD to watch.

It was funny. Sure there was no hands or feet animated. The humor of the Bible tales combined with modern movies or shows was brilliant. And they actually discuss important issues for kids and offer real solutions. How to deal with bullies, why it is important to take care of each other, how to be a good friend, and parents want the best for you are the more common themes. As a parent it is great to have a show that is entertaining and talks about some real societal issues frankly. Sure, it mentions God and Jesus, but that doesn't mean it doesn't have lessons that other people outside Christianity can't enjoy.

At this point we all sit down to watch any new Veggie Tale DVD that we rent. I hum the songs, too.

--Mom

P.S. Larry Boy Rocks

Posted by parents at 07:34 PM | Permalink | Comments (2) | TrackBacks (0)

Last Friday, was the meeting about integrated Hannah into the preschool her brother went to. It went well. I was surprised. All the people I have listened to over the past few years seem to have made a difference. When we presented our ideas and concerns, the people we met with seem to be in agreement and liked the idea. Wow!

Some factors I think helped into leading up to the concurrent agreement. We didn't just come with a problem we came to the meeting with a solution. The director of the school we wanted Hannah to attend came. Our nursing coordinator came. We were able to make plans with all the decisions makers in the room. I'm excited and happy to find that the district is actually looking for integration.

--Mom

Posted by parents at 07:27 PM | Permalink | Comments (2) | TrackBacks (0)

I'm guessing several of you woke this morning, wondering what felt different.  Something was just a little off.  Was it a change in the weather?  Halloween ghosts getting an early start on autumn?  Something accidently left out of the fridge all night:  a sacrifical baloney offering to the kitchen gods, perhaps?

No, that was me fixing something.

This is a rare event.  In our house, Janette wears the toolbelt; I call (or delegate calling) service providers.  But this morning, I was emptying the dishwasher while everyone else slept (yeah, don't break that arm patting yourself on the back).  The top rack has been off kilter for awhile.  The right side has kind of dragged and tilted when pulled out.

I took a closer look this morning and found that the little wheel thingy wasn't connected to the little spoke thingy.  So I moved the wheel thingy and put the spoke thingy back in it.  The top rack now runs more-or-less correctly (very technical - I'd explain further, but you wouldn't understand ). 

This is a major achievement.  I don't expect it to last, of course.  The root cause of the problem is still turning the right slider-bar-thingy a little cockeyed, and I'm pretty sure we'll need parts.  But I'll (delegate) making a call on that one.  Today, I bask in my brief, manly achievement.

-- Dad 

Posted by Dad at 08:25 AM | Permalink | Comments (4) | TrackBacks (0)

Janette bakes the best, homemade rugelach.  For the uninitated, rugelach is a chocolate-and-cream-cheese pastry.  Janette prepares it over two days, letting the dough sit overnight in the fridge.  It is rich.  It is chocolately.  Well-prepared, it is heaven.

Yesterday, we shared this treasure with Hannah's Individualized Family Service Plan (IFSP) team.  We had added the rugelach based on a tip from the All-Born-In Inclusion conference Janette attended a year-and-a-half ago.  It was our ice-breaker:  a way to introduce ourselves and Hannah to an almost new (to us) team, particularly because we had called the meeting to revise Hannah's 6-month old IFSP. 

We had written the IFSP with a prior team, intending to focus on communication, mobility, and inclusion with typical peers.  The original teaching team had worked well with Hannah; we were seeing significant progress in both communication and mobility.  Although we attributed some of that to our work with Hannah at home and Hannah's own motivation and development, we were still impressed with the program.  Plus the classroom was based five minutes from our house in a local school:  overall, a good situation for everyone.

Six months later, Hannah's formerly locally-based pre-school was in the process of relocating to its 3rd facility (a business park), an hour's bus ride each way from our house.  The 2nd facility had had no running water or bathrooms in-room.  Hannah had no typical peers in her class.  Though district planning and inertia, we had stumbled backwards into a self-contained classroom, twice a week, an hour's ride from the house.

So we called a meeting.  We came armed with constructive criticism, positive feedback on what had been working, a plan to move Hannah out of the newest facility and into a nearby preschool with typical peers, the right stakeholders (Hannah [of course], J, the director from our preschool-of-choice, and L, a nursing manager from CNS) ... and rugelach.

In the end, the meeting was very productive.  The Early Intervention team, who had also assembled the right stakeholders, was open to our feedback about the current school and to our plan for moving Hannah to our selected preschool (Gabriel's old one, in fact).  We discussed medical issues (mainly:  access to a sink and bathroom), consultative visits to the school by PTs and OTs, and, toward the end, a schedule for getting things moving in this direction.

Kudos to the entire team for being open to changing things up and moving Hannah into a fully inclusive environment.  Particular thanks to J, the preschool director, for her openess in going this route with Hannah.  And to Hannah's Early Intervention teacher who spent some time getting to know Hannah, singing and playing with her, as the meeting progressed.

So, in a few short weeks, Hannah will follow in her brother's footsteps and attend his preschool.  We've got some extra work, planning, & coordinating to do, but I think Janette, Gabriel, and I are excited.  We'll see what Hannah thinks soon, but I think she'll have a great time at preschool and continue to blossom into the beautiful young girl she is becoming.

-- Dad

Posted by Dad at 02:17 PM | Permalink | Comments (1) | TrackBacks (0)

A quick note that Kim at Emergiblog has put up a great set of all-things-nursing blogs for Change of Shift.  Janette and I got a nice write-up, and I encourage you to check it out.  I'll post a bit more once I have read through some of the (I'm sure fantastic) entries.

-- Dad

Posted by Dad at 10:44 PM | Permalink | Comments (0) | TrackBacks (0)

I haven't been spending enough time with Hannah lately. 

This fact was evident tonight when I was playing with Hannah.  After singing a couple of songs & performing the obligatory tickling, I helped her rise to a standing position on the hard floor.  Mixing play and PT is a good combo, I thought, and I was sure Hannah would enjoy the extra attention, encouragement, and musical rewards.

Then she took a step.

And another step.

Granted, I was still supporting Hannah under both arms, but she was doing a good, stiff-legged walk:  one foot after the other - the kind of walk one would do on crutches.  We walked on to the dining room/kitchen tile.  She took a few extra paces.  Her g-tube was tethered to the Kangaroo feeding pump, so we did a short semi-circle around the pump.

Hannah stood in place for a few minutes, catching her balance more than her breath.  I sung a reward, and she took a few extra paces.  Then she allowed her knees to buckle, indicating she was done:  it was time to sit and rest.

I was surprised.  I had been encouraging Hannah for several steps and some distance, completely unaware that she had been moving this direction for the last week or so.  Janette had said they'd been walking to and from the bathroom (Hannah is potty-training herself:  another unexpected milestone that Hannah set herself).  I had pictured much more assisted-walking like Hannah had been doing in the Rifton pacer for months.

But, no, Hannah is W-A-L-K-I-N-G.  Yes, she requires assistance and support, but I think we're not all that far away from some new-found independence for her.  Time to celebrate and to keep my eyes open for more of our kids' Firsts.  If I blink, I'll miss them.

-- Dad 

Posted by Dad at 10:03 PM | Permalink | Comments (3) | TrackBacks (0)

A quick mention:  The newest Carnival of Family Life is up over at Mother Approves.  Check it out when you can. 

Kind of a neat system:  you can also "approve" the blogs/entries you like (like ours ) which helps other moms and dads find articles and blogs on topics that interest them.

-- Dad 

Posted by Dad at 09:45 PM | Permalink | Comments (0) | TrackBacks (0)

Gabriel and I enjoyed a snack at Costco today and discussed the new book we had purchased. It was a 3D page-turning book that opened up a model of a frog’s anatomy while going through the pages. I was reading facts to him that were new to me.

Gabriel looked at me seriously and said, "Are tree sharks real?"

I did a quick indexing of real creatures in my brain. Yeah, I had to do the night shift last night, so I had to check internally first before I answered. "No, there are no tree sharks. Did Daddy or Uncle K give you that idea?" Teasing the children with untrue facts is an honored Daddy tradition in our households. I was vaguely remembering a comment Uncle K said after an all-boy excursion about Max Sharks. (Max is the name of our public light rail system)

"No, it was from that tree show where Warts the tree frog said it."

"Oh."

"Actually, Ick gave him the idea." (Ick is a fish that lives in the watering hole under the tree. He gets some interesting ideas.)

"Oh, you know Ick:  he is mistaken a lot. A tree shark is a fun pretend animal though." I pulled out my travel pocket notepad. "Tell me about tree sharks. There is a book somewhere in that."

He tilted his head took a bite of frozen yogurt. "Remember, Mom, they are not real."

"I know, but if they were, what would they eat?"

He smiled.  "Frozen yogurt and churros."(Churros are from Mexico and are long fried pastries dipped in cinnamon and powered sugar.  They taste like donuts.)

"Frozen yogurt and churros, huh. How would they find that in the wild?"

"They don’t have to find them.  People would give it to them."

"What if they lived in an area without people? Would they eat nuts, berries or leaves?"

"I think they like nuts."

"Would they eat insects?"

"Sure."

I scratched my chin.  "About the tree, Gabriel, how would the shark move about the tree? Would he swim up the trunk or swim in the air about the tree?"

"Swim in the air about the tree." His face was becoming more serious in thought.

"How about sleeping: how would the shark sleep in the tree? Does it rest on a branch? Does it stick to the trunk or does it wrap its tail around a branch?"

"He’d wrap his tail around a branch and hang with its head down."

"Cool, what color would it be? Would it be green or brown?"

"It would be the color of normal sharks, Mommy." He said this incredulously.

"Oh, so it will blend in with the sky."

--Mom

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

One of the things I love about being a parent is listening to my kids laugh. One of the really neat things about little kids is I never know what is going to set them off. Gabriel started laughing once after eating an ice cream cone and the words ickey and sticky were said together. For two months after they could be said to send him into laughter. Hannah's recent laugh spark was the word stuck sounded out, it has been working for the last week. Today, the sounds lambs make made her giggle for ten minutes.

Both of my kids have this great laugh that comes out in machine gun like cartridges of giggles. I always end up laughing too.

Hannah's Laugh

--Mom

Posted by parents at 06:31 PM | Permalink | Comments (1) | TrackBacks (0)

"Daddy, I want to go home."

Gabriel and I were sitting together in our synagouge's sanctuary.  The large room was a quarter full of parents and kids, both fidgeting, waiting for a first-day-of-Sunday-school assembly to start.  He was cuddling my arm closely.

"Gabriel, this is going to be fun, and I'll be nearby."

"Can you come with me?"

"Gabriel, you already met one new friend...."

A girl a few years older had briefly befriended Gabriel in the lobby.  She had confided in us that her ancestors were lions, but that no one believed her.  I let her know that our ancestors had been monkeys (Darwin smiles).  Gabriel heard this as "aunt-sister," not "an-cestor."  He quickly defended his aunt, my sister, reminding me she was not a monkey.

Sitting next to me now, Gabriel pouted, "Yeah, I know, but I wish you could come with me."

"I'll go to school, too, with the parents."  At least, I would once those classes started.  Right now, a nearby Noah's Bagels was calling my name....

Gabriel shrunk in his seat as the assembly started.  The head of the school started with a discussion of Rosh Hashanah.  Then she held up a candy bar:  a reminder of a sweet New Year that would be passed out to all the kids after class today.  Gabriel sat forward in his chair; she had gotten his attention.

Together, the assembled group sang a few songs appropriate for K-8.  I joined in loudly on the one I knew, David Melech Yisrael, over-emphasizing the frenetic hand gestures that go with the kids' song.  Gabriel laughed and giggled.

"I'm going to start calling names with kindergarten class..." the school's director announced.

"Gabriel, this is going to be your class!"  I gave him a thumbs-up.  He smiled and returned the same.

Soon after, Gabriel marched off to class with me trailing farther behind.  The classes teachers introduced the curriculum, discussed format and pick-up times, asked for questions, then dismissed the parents.  I asked one teacher for clarification on the pickup time, and I prepared to leave.

I gave Gabriel a good-bye hug.

"What did she say?" he whispered.

"She let me know when class would be over."

"Will it be a long time?"

"No, not a long time.  I think you'll have fun."

I left, Gabriel looking a bit apprehensive behind me.

After wandering the synagouge gift shop and library (one of the better parts of having a child in Sunday school), I drove off to enjoy a toasted pumpernickel bagel.  By the time I returned an hour or so later, Gabriel was beaming.

"I wish I could stay longer.  We even went to the playground!"  One eye dripped with the remnants of red paint or marker.  The color of his hands said emphatically, "YES!  I did crafts today!"  He looked like a junior warrior that had conquered an invading army.  Apparently, the first day had not been so traumatic after all.

Posted by Dad at 05:53 PM | Permalink | Comments (0) | TrackBacks (0)

I love humor.  Semi-morbid, nursing humor:  even better.

Terry, who maintains a really interesting, well-written blog about her experiences as an anesthesia nurse at Counting Sheep, posted this gem of a video link.  In under two minutes, most will chuckle heartily.

Thanks, Terry, for pointing us all to this video and for writing about your experiences.  Actually helped me explain & enforce the whole don't-eat-before-surgery rules several months ago!

-- Dad 

Posted by Dad at 12:32 AM | Permalink | Comments (1) | TrackBacks (0)

"There is Zazoo, Mommy." We are reading a search book featuring the Lion King characters. It is a page showing Scar’s reign in a sea of hyenas. "Why are they fighting? Oh, I got in trouble for fighting today!"

"What Gabriel?" He has been home for approximately seven-and-a-half hours today, and, while we are reading a bedtime story, he pops out with this statement.

He is lying there casually, trying to look unconcerned, but I can feel an underlining uncertainty.

"You got in trouble for fighting," I sit up and cross my arms. "What happened."

"This kid went to punch me, so I blocked, and I was going to hit him back. Mrs. G saw us and took us aside. She told me if it happened again, I would go to the principle office and she would call you."

"I would hope so!" I said, wondering why I hadn’t been told today. I appreciated Gabriel telling me. "Why did the kid punch you, Gabriel?"

"Well, he was actually going for my friend T. I stepped in front of T to guard him from being hit."

In my head, I’m thinking that is pretty noble. So I say it, but then I say, "It is not ok to hit. You can block and get away but no hitting. You can only do hitting while sparing in Tae Kwon Do class."

I mentioned to Robert that Gabriel got in trouble for fighting. Robert went to get the report from Gabriel; the story he got was slightly different, of course.

--Mom

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Have you seen this one?

In a gritty backyard, two policemen work the beat.  One, Tyrone, appears to be a straight-arrow, but works for the local mob boss, Uniqua.  The other, Pablo, is rough and tumble, working undercover for the good guys.  Tyrone and Pablo have to duke it out at the swingset, wrestling and tumbling, until Pablo's tummy rumbles.

"Man, I could use a snack," says Pablo

"Me, too," Tyrone agrees.

They walk through the nearest back door, laughing.  End movie. 

I briefly owned the only copy.  It was called The Departigans.  It all began during my last early morning nursing shift.  I was busy recording a movie from our PVR to our DVD recorder (see Betamax for my justification).  Around 6:30 am, I woke Janette and headed to the shower.

A little while later (okay, fifteen minutes - I take long showers), I returned to the family room.  Janette and the kids were there, watching the Backyardigans on the tv:  the tv formerly tuned to the movie I was taping, The Departed.

"Um, honey, I was taping something."

"Oh, sorry?  I was in Hannah's room and..." Janette proceeded to take me back in time thirty-minutes and bring me forward very... slowly... to... the... decision to watch Backyardigans.

"You could keep taping it?  You'd just have some Backyardigans in the middle."

Frustrated, I ejected the DVD and tossed it in the trash.  I focused on the fact that I'd have to start over.  Janette apologized.  And the one and only copy of The Departigans, unfinalized, moved on to parts unknown.

-- Dad 

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When Hannah was in the Hospital this last time, she had a visitor she adored. It was a woman who sings and plays guitar. So the women and I went through about 3 songs and paused. We had just done the Wheels on the Bus: one of Hannah’s favorites. I came up with an idea based on a family car thing we do.

Robert, Gabriel and I make up songs like the twelve days of Christmas song, but use different themes (such as "my first day as a Jedi apprentice my master gave to me…" or "at my first day at Hogwartz my teacher taught me…"). By the end of one of these car rides, we are all giggling.

So I looked at the musician and said, "You know we could do things about the hospital."

She looked at me, adjusted her grip on the guitar, and shrugged. "Ok"

Hannah loved it, and we were all giggling at the end, so here it goes. It’s the same tune as the "Wheels on the Bus".

Oh, I thought of a few lines for some of our readers

…. I’m thinking about illustrating it too. Let me know if I should.

--Mom

Posted by parents at 08:40 PM | Permalink | Comments (3) | TrackBacks (0)

"Gabriel, you picked Sharkabet tonight."

"I know.  I know."

Gabriel paused in mid-pace, one foot in the air:  a good Karate Kid impression.  He glanced over my shoulder.

"Why don't you help me find all the sharks marked "'Extinct'," I offered.  Extinct sharks are stamped with an "Extinct" label throughout the alphabet.  I figured an I Spy-like activity might keep his interest better.

"I see one!"  He pointed.

"Good job."  And we continued through the alphabet, identifying each shark with sequential letters, watching Daddy stumble through the pronounciation key for the extinct species.

"Daddy, what does "a-stinct..."

"Ex-tinct."

"Daddy, what does "a-stinct" mean?"

"Ex-tinct means they're all gone:  like the dinosaurs."

"Oh," he paused.  "Will they come back?"

"No, they're all dead.  Some of them have been gone since the dinosaurs millions of years ago."

"Oh.  Will the dinosaurs come back?"

"No, they're dead, too:  a long time ago."

"Daddy?"

"Yes?"

"Where do you go when you die."

Oh... kitty-cat (Gabriel's and my agreed terminology for the more typically Oh C*#&).

"Well..."  I noticed Gabriel's breathing had changed.  He was nearly holding his breath.  He had found a gateway, Sharkabet, to ask a question that had been bubbling up for awhile.  "There are a lot of ideas about that, but no one really knows."

His eyes widened.

"Some believe, when you die, you go all the way around again and are born as a baby again."

"Really!" Gabriel giggled with relief.  "A little baby?"

"And some believe, when you die, you go to a special place called Heaven where you can do whatever you want."

"Cool!"

I saw the tipping point coming.  Gabriel was pretty enamoured with death destinations.  I needed to get my perspective in, too.

"You know what I believe?"

"What?" he asked, still giggling with relief.  This had been bugging him for some time.  Knowing about death, but not knowing where it lead, had been conflicting with his age-appropriate need for order, rules, and finality.

"I think it's important to focus on living.  Being alive is fun, and we can do so many things!  I can't control death, but I can enjoy doing stuff, making the world a better place."

"So when N.'s Mommy died, she became a baby!  I have to go tell Mom!  She'll be so surprised!"  Gabriel raced off into the family room to tell Mom and Hannah the great news.

I later re-emphasized the whole "living aspect" of our discussion, and it seemed to find some small measure of success.  I am convinced, however, that Gabriel headed off to bed, smiling, still giggling occassionally, stuck in a reverential resurrection loop.

-- Dad

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Last May, Hannah started going to the Early Intervention preschool. Before she started school, Robert and I talked to the IFSP team. We didn't have a problem with her being with other kids experiencing disabilities, but we also stressed we wanted her in shared time with peers not facing such big obstacles developmentally. Everyone smiled at us and nodded their heads. They mentioned in passing that sounded great but that it was hard to find a preschool that will take on someone with disabilities.

At that point, we smiled and said, "We've already talked to Gabriel's preschool and they want her."

"Wow! Really! Which one?" was the brief response before rushing off to some other meeting about something else.

So it is now September. We made it to several versions of Hannah's class.

The first location was O.K. They had a lot of room and plumbing in the room. All the teachers interacted with Hannah and other children were encouraged to interact with her. It was 10 minutes from our house. The class was 8:30 to 10:30 with a basic structure.

1.Free-play

2. Stations one of the following:

a. bean table (safer then sand)

b. pushing buttons (practicing using a communication device)

c. putting together a puzzle(dexterity challenge)

3. Circle time consisting of

a. one dance/song

b. welcome song naming each child with hand clapping

c. one story

4. Stations one of the following:

a. clay

b. physical therapy

c. bean table

5. Snack time

6.Art Project

7. Circle time to sing goodbye.

They moved the class to a new temporary location that is also used as a college satellite campus. It is farther from our house and they want the bus to pick her up at 7:20 for a 8:30 class. The rooms are warren like in finding and not well labeled. No one greeted the bus. The rooms are a third the size. Hannah's wheelchair with all her medical equipment doesn't fit in the room. The rooms have no plumbing and the bathrooms don't have a safe place to change Hannah. The teachers are all new, temporary and not use to working together. One nurse mentioned when she was there the teachers were quarreling and undecided on what they were doing. I haven't heard of any particular schedule of events of class time from any of the nurses. I plan to ask more about that this week. Only the physical therapist is interacting with Hannah in class. Some of the teachers are expecting Hannah's nurse to manage other children. I haven't heard of any particular schedule of events of class time from any of the nurses. I plan to ask more about that this week.

I've rescheduled an Educational planning meeting with Early Intervention. They seem surprised.

The director of the local preschool who would love to have Hannah is going to come. A representative from her nursing agency is coming too.

The preschool we are looking at is 5 minutes away. We can even take the Max to get there. The rooms are a nice size and have toddler size bathrooms in everyroom plus running water sinks. They always have the approiate number of adults to children ratio. All the teachers have a curriculum they use and have a plan for the day. I don't even know what the classtime event schedule is like but it is already sounding better. Plus it is filled with children of all sorts not just children with disabilities.

--Mom

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

Doesn't this family look happy?  It's Gabriel's first day of kindergarten and a Friday:  a milestone achieved and a weekend to bask in its....

completely overscheduled mayhem!

Yes, welcome to Modern Parenting.  Please grab your datebook and red pen.  Lots to plan.  Let's get started.

Friday night:  The Ice Cream Social (6:30pm - 9:00pm)

And you thought school was just for your son?  No, please join us for a family ice cream social sponsored by your local PTA.  It's tonight (sorry about the late notice, but you don't want to miss this opportunity to meet your parent-peers, do you?).

Bring your family.  Oh, and some money for PTA membership (puh-lease).  We'll supply ice cream and the comfortable networking environment of the school gym.  Bring earplugs - those darned kids scream so cute!

Saturday Morning:  The Contractor Cometh (Not) (11:00am - 12:00 pm)

Yes, I requested an 11am - 12pm window to come look at putting up railing for your new ramps.  Thanks for calling me, back.  Any chance I could come later this afternoon?  I would have called you, but I don't have your phone number.

Saturday Afternoon:  Picnic Relief & Nursing-Sponsored Social (12:00pm - 4:00pm)

"I think we're here."  Rustling of paper.  "Can you figure out where we're supposed to park."

A map falls into my hands.  I laugh.  "Really?  Me?"

I hand the map to Janette's Dad.  He is a retired Marine; I'm sure we're in good hands.  He's pretty much got it as Janette finds parking for wheelchair access nearby.  The Children's Nursing Services signage swings in the breeze about forty feet away.

We do have a great time at the picnic, meeting other families working with CNS and nurses that we, somewhat surprisingly, have never met.  It's really important for us to meet other families that experience disabilities.  Plus CNS has been a very good team with which to work.

Hannah has a good day out.  She loves the red wagon (pictured).  We and she meet lots of folks interested in where she's been and what she's doing now.  We share stories & triumphs. 

"I want to go to the playground!"  Gabriel and Janette's Dad are off to the races, only returning briefly for gratuitous pinata bashing.  Ah, he'll (they'll?) sleep well tonight!

Saturday Evening:  The Optional Event – John Denver Tribute and Sustainable Living Display (4:00pm - 8:00pm)

So not going.

Saturday Evening:  The Sports Event – TV Football

Don't remember who played.  Didn't care then or now.  Enjoyed the game with family, friends, and a bunch of differently-sauced boneless chicken wings from the Buffalo Wings place.  

"I'm a buffalo.  I'm a buffalo."  The hat, yellow buffalo horns, looks cute on Gabriel, but the mantra gets old.  The game is enjoyable, though.

Saturday Night:  Date Night for Mom and Dad (hah, hah - soooo just kidding)

8:00pm:  Dad goes to bed.  Nursing shift tonight.  Gotta rest.

8:00pm - 9:00pm:  Gabriel and Hannah double-team Mom. 

10:00pm:  Gabriel sleeps (the playground worked.  It really worked!)

2:20am:  Hannah wakes

2:30am:  Dad wakes & takes over. 

2:45am:  Gabriel wakes.   After trying to sleep with Mom, he joins the party in Hannah's room.

4:00am:  Dad and Gabriel share an Ovaltine and discuss his dreams, his nightmares, and whether or not swallowing air to burp is bad for you.

4:30am:  Gabriel brushes his teeth again & heads to bed.

4:30am:  Dad brews more coffee & waits anxiously for the Sunday paper.  Tomorrow, after all, is another day.

-- Dad 

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School seems to be on my mind lately. Gabriel starts kindergarten on Friday. Yes, Friday, it is bizarre here in our school district in Oregon. Kindergartners go two days a week and since he is going Wednesday and Friday he will also go every other Monday too. At least it is all day but the Monday is a shorter day. I’m still processing the schedule myself.

Today, we had the meeting with his teacher. I thought I would get a chance to ask some questions. We were 15 minutes early and that didn’t seem to bother her but she immediately gave me papers to fill out while she rushed Gabriel to a table and started testing him. I stayed back and filled out my busy work and let her evaluate. While this was happening another family came in and the process was started again with another teacher evaluating that child. By the time I finished the paperwork Gabriel was done with his teacher. I handed her the papers and let her know I had added a couple more to the stack. I included a copy of the recent Heineken Blog and Hannah’s life plan. I wanted to give her a picture of Gabriel and his home life.

She paused a moment bewildered. She then gave me an ok whatever smile and turned to the next family. Gabriel and I started loading his supplies in his temporary cubby.

I thought we had been dismissed so Gabriel and I started heading out the door. I realized I hadn’t signed up for a lunch card for him yet and started headed for the office. The other teacher came rushing after us.

"I need to evaluate him too."

I smiled realizing I had more questions too. "Sorry, I thought we were dismissed."

So we came back in. Gabriel was sat down with the other teacher and I chatted with the other family.

I managed to ask another question and let all the teachers know I was an illustrator and could be called upon for displays. The teacher seemed to relax after she finished the next child’s evaluation. So it felt like a less rushed conversation.

Meanwhile, yesterday I put in the call to early intervention that the classroom in the new location wasn’t working. I came home to find a message from the coordinator, who was cheerful and polite but included a caveat that her boss would also be calling. I’ll go more into this tomorrow.

--Mom

Posted by parents at 09:58 PM | Permalink | Comments (2) | TrackBacks (0)

For those of you that have been following our blog, we love to participate in blog carnivals, particularly about parenting/family life and medical stuff (our nursing friends over at Change of Shift).  Take a look at the newest Carnival of Family Life when you can!

-- Dad 

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

Kids that use a trach, like Hannah, often have a feeding aversion.  I think it is the protect-the-airway instinct intensified by the equipment, regular intervention, and illnesses. 

Hannah, though, will put anything and everything in her mouth:  pacifiers, action figures, phones.  Everything, that is, except food.

Between surgeries, we've had feeding clinic appointments only to lose them to some medical emergency or another.  A few nurses and Mom have had initial successes only to have them stolen by hospital visits and the Forgetting that seems to accompany the agenesis of the corpus callosum (ACC).  Overall, we've worn the record grooves well, but gotten nowhere.

A few weeks ago, I started taking a shot at getting Hannah interested in tasting food.  This is a HUGE step... um... for me.  I'm pretty particular about textures.  Poopy diaper:  no problem.  Yogurt with high risk of getting my hands dirty:  not an area of strength for me.  Long story.  Long history.  Just trust me:  not something I approach voluntarily.

"Good job, Hannah," I said.  She beamed back at me.  After a couple of nibbles, she dropped it, picked it back up, examined it closely, and put an end back in her mouth.  This continued for awhile, until the string cheese was better left for dead.  I grabbed some more and we repeated together.  

Tonight, it was carrots.  I handed a carrot stick across the table, with Mom's help, to Hannah.  She grasped it herself (a key need for her:  to have control over the food she may put in her mouth.  Airplanes & other gimics need not apply).  Again, she copied me, putting it in her mouth, tonguing and nibbling.  We all encouraged her with praise and clapping when she succeeded. 

"Looks like you'll be working with her on feeding," Mom said.

"Yeah," I sighed.  "I think you're right."

Across the table from me, Hannah vocalized, smiled, and laughed.  More Daddy time?  Sign me up! 

-- Dad

Posted by Dad at 09:45 PM | Permalink | Comments (2) | TrackBacks (0)

 When I draw Hannah a bath I get the temperature right then turn the water to the shower head and plug the tub. As the water is filling I get her ready and put her in her Rifton bath chair. The reason I do the shower thing originally was to get her use to other noises and states of water. She has Agenesis of the Corpus Callosum and it can work a little like Autism where too many sensations can overwhelm her. I never pushed her to put her hands it I just always had it going.

Tonight, Hannah reached into the stream and tried to play it like a harp. She laughed and chortled and titled her head forward and let it stream through her hair.

I was elated.

--Mom

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