Kintropy In Action

Last Thursday, Hannah had her first private sector Augmentative Communication evaluation.  Augmentative Communication is the use of electric device, pictures or computers to aide with communication.   Stephen Hawkings uses an augmentative communication device.

Her past evaluations had been at school without me around and about ten minutes in length in a classroom setting.  She was usually distracted.  So the adults with her couldn't see her make choices or show her understanding.  She was too busy watching the other kids. 

I decided we needed to help the process along.  So I put us into the long waiting list for an evaluation through the child development center at Hannah's  hospital.

I told her about it before we went.  I explained if she didn't show her communication skills, she would be stuck in this limbo a little longer.  She seemed excited.

I brought some things I knew would help:  three specific toys.   The first was a box of cards that represent nursery songs.   It really is the only thing she has ever been interested in choosing between visual cards.  I would lay out the cards in front of her and she would choose one. 

She would choose by eye gaze and occasionally touching them.    The second was her MP3 player by Playskool which consists of one big button that she pushes to operate and switch songs. 

The third was the Learn Through Music Plus by Mattel.   It has an interactive touch screen that generates different songs depending on what screen you're on and what you touch in the pictures.

Hannah was on – really on – this day!

She showed the specialist that she would look at all her choices, then make one with the music cards.  She also encouraged the specialist when she understood her choice with a “Yay!” out loud.  She operated her other toys showing that she did know how to use buttons.  She does lack a certain finesse, she kind of hits at the toys till they work.  But she obviously understood how to use it.

Eventually, the specialist  brought out her own cards and had Hannah make choices.  Hannah complied.

She agrees that Hannah is ready to try a device.  I have some major homework of putting together a notebook that has pages that works like an eye gaze device.

It is nice to move forward.

Hannah chatted all the way home excitedly.

--Mom

Posted by parents at 09:00 PM | Permalink | Comments (1) | TrackBacks (0)

This afternoon, there was a knock at the door.  Gabriel, ever curious, scouted from our front window.

"There's a lot of people at the door!" he cheered.

I walked to the door with him.  "You can open up," I said.

Gabriel opened the door.  A young lady stood there, and she quickly introduced herself and the half dozen plus young people behind her.  "We're from a local church, and we'd like to rake your lawn."

Our lawn was ripe for the raking, of course.  Over the last two days, the large, wide-leaf tree standing directly in front of the house coughed up half of its golden leaves.  They covered the lawn and the driveway.

"How much would we pay you?" I asked.

"It's free."  She handed me a card from her church, the East River Fellowship .  "We just want to introduce people to our church and help out the neighborhood."

I asked a few more questions and again offered to donate money.  She politely refused, and I took her up on her offer.

As she and her large group of helpers pulled out their rakes, I asked Gabriel, "Wanna help?"

"Yeah!"

Gabriel and I threw on our shoes, hunted for our own rakes, and joined in the work for a few minutes.  The church group worked well together, chiding each other with small talk along the way.  They worked efficiently, some raking, some bagging, but teased and jostled each other along the way.  This wasn't a solemn event or a check-the-card, forced community project.  They were having a good time.

Gabriel and I "finished" quickly, having done way less than 5% of the work.  I asked if we could donate to the church again.  The same young lady I had spoken with before called over the youth adviser.  He again turned me down, explaining that they just wanted to help out for the sake of helping out.

Janette and Hannah, having donned coats, joined us on the short ramp that leads to our front door.  Hannah eagerly followed all the young folks raking, beating bushes, and bagging leaves.  I sang a few songs for her, and she clapped enthusiastically.

The church team finished raking in about ten minutes.  They packed leaf bags and tools into a pickup nearby and plotted a move to another neighbor's door (and probably their lawn).

"Thanks again," I called to the advisor.  Knowing that they were probably out drumming up interest in coming to their church, I apologized, "We're Jewish."

He smiled, maybe shrugged.  "It's a good mitzvah you did for us.  Thank you," I said.

They headed off to their next job, making the neighborhood a better place.  I marveled at their genuine display of Tikkun Olam - the Jewish concept of repairing the world through social action.  In this case, these kids literally reached out and made the neighborhood a better place through an unrequested and uncompensated good work.

What a great example for both Gabriel and Hannah to see.  I hope our family, and our neighborhood, will find ways to follow their lead.

-- Dad

Posted by Dad at 09:19 PM | Permalink | Comments (0) | TrackBacks (0)

Reality has been a concept debated through the ages.  What is real?  Tonight I'm going to touch on a subject that tends to hit Robert and me in the head a great deal.  Philosophers debate whether reality is all physical or mental or a combination of both.   For me, it is physical with an emphasis on how my subjective conscience approaches the situations..

Having children messes with one's reality.  They require all your time, and the world at large is not designed to accommodate babies' and toddler's needs.  Easy tasks that required no forethought before becoming a parent change into cumbersome challenges. 

When I became a parent, showers were no longer a right.  I needed to figure out what to do with the baby (who really just wanted me to hold him).  So it became a take-turn type thing with my husband.  Robert  took  care of Gabriel  while I showered for five minutes.  Eventually, Robert  needed to go to work.  So I needed to shower around his timetable or find a way for Gabriel to be safe and happy while I did this.  In came the bouncy chair.   When Gabriel grew out of that, then I needed a playpen and Sesame Street.  Now he can pretty much putter around the house alone for five minutes while I shower.

Hannah took this reality shift to a new level.  Showers became 2 minutes at the most.   For the first 3 years of Hannah's life, my showers were not possible without another adult in the house.  She could pull the vent off, take out her g-tube, or just stop breathing in some weird way without me knowing.  I could not even  take the trash out of the house to the curb; there was too much that could happen that would be life-threatening in that time period.  (this stuff was happening several times a day - it wasn't just a what-if situation)

What I have learned from these experiences has shaped my reality into a life view of  'don't  sweat the small stuff.'  I appreciate every moment of leisure I get.  I  try to keep that critical voice in my head on mute and live in that state of yesterday is the past, tomorrow is unknown, and today is a gift.  I know it is hokey, but it is how I get through the day. 

Sometimes, I must admit I do get baffled by other's realities.   I've had a week of people totally making a fuss over small stuff, and it takes all I have not to laugh at them or just say, “Whatever.”

--Mom

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

Looks like I'll be eating some crow for dinner (and breakfast on Monday).  Sigh.  Go Huskies?

-- Dad

Posted by Dad at 02:24 PM | Permalink | Comments (0) | TrackBacks (0)

So I got an email from a co-worker a few days ago.  She encouraged me to read the forwarded email she was sending on to me before responding to the subject line.  Not a good sign.

I read - slowly, calmly.  A co-worker from our parent company had been alerted to the fact that I, an Oregon resident, was brazenly wearing a UW Huskies pullover just days before the big Dawgs-Ducks game this weekend.  He, a UO graduate, recommended immediate disciplinary action.  I, a UW graduate, responded - slowly, calmly - something along the lines of, "Bring it on!"

Yes, boys will be boys.  He and I settled into a few more taunts, then the following agreement:

1. The loser buys a t-shirt in the winner's team's colors and provided it to the winner
2. A snapshot is taken of the winner in his new team-spirit shirt
3. The loser must host the photo of the winner on his desk for the remainder of the football season

So, although I would have caught parts of the game tomorrow, the game will now have my rapt attention starting at 12:30.  I have invited our house's one other big football fan, Hannah, to join me.  Gabriel was invited, too, but he'll come for the snacks, then play his DS.  Hannah will watch and play and demand songs from me, but she'll actually enjoy watching the game.

Janette, on the other hand, will be headed out to enjoy a movie (she informs me).

So let's cheer on the Huskies, shall we?  Diary of 1 runs a great sports merchandise store:  Team Mascot.  Hopefully, this is where my work friend can buy me a t-shirt when his team loses.  Go Dawgs!

-- Dad

Posted by Dad at 08:04 PM | Permalink | Comments (0) | TrackBacks (0)

One of Gabriel's spelling words this week was bit.   I was sitting on the couch folding diapers and going over his words with him.  When we got to that word he sat next to me.

“Mom, this word makes me nervous what if it had a C and H at the end of it?”

I'm pretty sure my jaw dropped open.  My mind whirled.  Where had he heard that word?  I never use it and back before I had kids and I use to cuss I never used that word.  “You know that word?” There was no anger in my voice just surprise and trying to mask laughter.

“I never say it Mom.” he quickly said

This simple statement had tons of subtext.  That wasn't what I had ask.   “What word is it Gabriel?”

His eyes widened “I can't say it Mom.  It is awful.”

His alarm that I would ask him to say it made me relax.  He wasn't using the word and talking about anyone with that in context. “It rhymes with witch right Gabriel?”

He nodded

“Your right it is an awful word.  You should never call someone that.”  I paused still processing and nonchalantly asked  “I'm curious, where did you hear that word?”

He shrugged “TV”

I winced.  I had just watched a made for TV movie on Lifetime (Feel free to make fun of me, Robert and I do all the time.)  it was called Sorority Wars.  And in it there were several scenes where that word was used. 

I feel like hitting my head like Homer Simpson and saying "Doh!"

--Mom

Posted by parents at 09:38 PM | Permalink | Comments (1) | TrackBacks (0)

It's late, and the kids are in bed.  Asleep, actually asleep!

Getting both kids to calm down, lay down, and sleep has been astoundingly hard for years.  We've tried the books.  We've built the rituals.  We've counted - lots of by the time I count tos.  But for the last two days, both have been going down to bed and sleep remarkably well.  Here's what we've changed.  I know two points only make a line, but I hoping this is maybe a trend.

We clarified expectations with Gabriel.  In room by x, in bed by y, asleep by z time.  With him, provided he lays his head down, he can turn off and go to sleep.  Give him a book, a stuffed animal, any other distraction, and you'll be chatting with him until 11 or later!

With Hannah, Janette has been working with her on, let's say, more regular potty rituals w/ assistance on getting comfortable.  With the gas gone or controlled, she's tons happier right now & ready to go to bed w/ less pain, turning, etc..

Again, not a trend yet, but hopefully good signs.  Our bedtime rituals (read books, cuddle time, etc.) have become fodder for our two Stallmasters.  At the moment, though, we have relative quiet and peace.  I know I'm jinxing it by saying that, but maybe if I say it, clap my hands, and click my socked heels together, it'll keep working.

-- Dad

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

When we walked through the double doors leading to the indoor water park we were hit with warm moist air.   I was gingerly pushing Hannah in her wheelchair while Gabriel giggled and pointed to the giant play structure with a humongous bucket spilling water down on the people on the play structure.

Robert was giving him encouragements as we approached the lifeguard admitting check point.  It had an giant apparatus filled with life jackets of all sizes.  We stopped and a cheerful women looked the kids over.  She selected life jackets.  She helped Gabriel into one and then helped me put one on Hannah.  She smiled and bubbled and even talked to Hannah.  She bid us all to have fun as she directed us to the long ramp that went almost the length of the building to get down to the water park main floor. 

Gabriel was jabbering with excitement while Hannah was looking everywhere quietly.  Robert and I exchanged looks of 'Here we go.'  I find our team work very helpful in these situations.  Our first order of business was to secure a locker.  We were down to essentials but there were shoes and cover ups required in the lobby.   We took another ramp down to the next level and found the lockers conveniently located near the bathroom and children's pool.   Signs posted that we all should shower before we went into the water.   We stowed everything we could then split up.  Gabriel and Robert went to the men's room while Hannah and I went to the women's room.

Now whenever I approach a unseen bathroom with Hannah there is always a sense of trepidation.  Public restrooms on a whole are not convenient  for people in wheelchairs.  I was immediately relieved when the space directly inside was open and not crowded.  The area next to the shower stalls was a little cramped.  When she is older there will be some problems but for that day it was fine.  I rolled her into a shower kiosk right outside the shower area.  I turned on the water and tried to figure out how to warm it up.   I stepped in with my suit on and did a wash down.  Hannah started giggling.  Anything usually done in private, done in a public space starts her laughing.  Next, I sat her on the floor and got her wet.  She was unsure about this and demanded to be put back in her chair.  I told her we all have to shower before we go play in the water.  She harrumphed at that and let me finish.    When I went to set her back in her chair I realized it would be getting pretty wet.   I made a mental note to bring a towel for her to set on next time. 

We met the guys outside staring at the water features.  Robert and I decided on a plan.  Hannah and I would try the kiddie pool while he and Gabriel tried the water play structure.   

The kiddie pool is well designed it has three perpendicular pipes in it's center randomly spewing water from each one.  They are surrounded by three equally spaced  2 feet diameter flowers that could be turned and create sprays of water from them.   To one side there is a structure that looks like a lifeguard station that is streaming water down in a well spaced curtain of streams.  The main part of the structure is actually the steps to a bending water slide the appropriate size for a toddler.     The water at the very edge of this pool is only about one center meter deep and gradually goes to a foot and a half to one side of the pool.   

The first thing I did was set her down.  In the 3 cm deep water.  She  stared at the water and watched the other kids playing with her parents.   I don't know how long we did this.  I then moved her next to the streaming water.  She immediately closed  her eyes and turned away.  This means in Hannah language 'Too much stimulation, take me away please.”  So I moved her away and tried some other things.  I went to the top of the slide but read that you can't ride with a child on your lap.  So we went to explore the other little pool it had a slide but I had to ride with her next to me.  It wasn't curvy and it was a steep drop and there was a constant sprinkling from the top.  It wasn't ideal but she did love it. 

Later as her comfort level grew she started to put her hands in the various fountains and play with them.   She loved the wave pool.  When the waves would hit her she would giggle.  I eventually got enough nerve to place her on top of me on an inter tube and ride in the waves she found this fun to.  Even when the waves were not going she would lay contently as we bobbed in the water.

When we would sit on the shore area, play with a fountain and feel the waves come in I would marvel.  A year ago when she was trached this would not have been a comfortable experience.  I would have thought about it then cringed at the idea.   This was are first family trip to a resort and we all had fun.

--Mom

Posted by parents at 01:02 PM | Permalink | Comments (2) | TrackBacks (0)

After our night's adventure, I was surprised to see Gabriel wake in good spirits.  I had expected some stiffness, but he walked around easily.  Gabriel and I headed to the breakfast buffet while Janette woke and got Hannah ready.  They met us there soon after.

Waffles, check!  Bacon, check!  Eggs, check!  So far, so good.

Afterward, we snapped some pictures of the kids, and then we headed upstairs to walk off breakfast prior to going back into the waterpark.  As we walked, Gabriel slowed.

"You okay, buddy?" I asked.  Hannah wheeled beside him, taking in the sights - high ceilings, flashing lights from the arcade.

"Yeah, I'm okay." 

"You sound kind of mope-y," I said.

"Sorry."

"That's okay.  You feel alright?"

"Yeah."

We walked to the 2nd floor elevator and prepared to go back to our room on the 3rd floor.  I turned toward the elevator.  Gabriel stared at the carpet; then he threw up.

"Sorry," he said.

Janette popped him over the restroom to finish the cycle.  A staff member from the arcade stepped in to help us.

"Do you want me to call for some medical assistance?" she asked.

I debated silently.  Gabriel's fall eight or so hours before lingered in my mind.  "Yeah, probably a good idea.  He fell of his bunk-bed last night."

"Oh," she replied.  She called it in.  I sat with Hannah and waited for help to arrive.

Gabriel emerged from the bathroom, his pj shirt spattered with breakfast.  "Sorry," he repeated.

"It's okay, buddy." 

The pool supervisor showed up and asked the medical questions while Janette took Gabriel and Hannah back to the room.  I walked her through the bunk story from the night before, but also let her know Gabriel had complained briefly about his tummy that morning.  My guess was virus.  I didn't see any sign of a concussion aside from the vomitting.  She took notes; then left with an offer of assistance if needed.

The cleaning crew came by and scrubbed, sanded, then vacuumed our 2nd floor elevator memento.  I joined Gabriel in the room, checked his temp (fever), and popped him into our bed (the bunk bed would not see him again this trip). 

Janette and Hannah headed to the water park while Gabriel and I held down the fort for the day.  He managed to keep some food down and slept for 3 hours.  I continued to watch for signs of a concussion, but the vomitting aside, I didn't see anything else.  The room's ice bucket came in handy after an attempted delivery of Tylenol failed, but most of the rest of the day was uneventful.

 Janette and Hannah popped in and out of the room, and Hannah clearly enjoyed the water park (more on that later).  Gabriel regained some energy in the evening.  He and I ventured out briefly to play a game called MagiQuest:  an electronic treasure hunting game played out along five levels of the lodge.  Then we called it a night.

By morning, he was back to normal:  no fever.  I hoped our third and final day at Great Wolf Lodge would be spent, uneventfully, in the water park itself.

-- Dad 

Posted by Dad at 06:21 AM | Permalink | Comments (0) | TrackBacks (0)

"So Hannah," I started.  She looked up from the potty, eyes 3 am bright.  "What goes garble-garble, step, step, klunk, WAAAAAAAAH!"

Hannah laughed.  Janette told me to stop it.  Gabriel, tears blinked away now, slept quietly on our bed.

"It was kind of funny," I grumbled.  Hannah enjoyed my re-enactment of Gabriel's sleepwalk/tumble down from the bunk-bed.  It made her laugh.  Mom?  Not so much.

I was just glad he hadn't really gotten hurt.  I woke maybe a minute before 2:30am - listening to the quiet of our first night at Great Wolf Lodge in Washington.  We had enjoyed a fun half-day in the water after check in.  Hannah had played in the kiddie-pool and tide pool.  Gabriel and Janette, then Gabriel and me had sped down the 48" height required water slides.  It had been a fun, full day.

I heard Gabriel wake in sleepwalking mode, muttering to himself within a minute of waking myself.  I considered moving over to the bunk bed he and Hannah were sharing, but figured since he had a bunk bed at home, he'd be okay.  

He took the first step.  I was showering him in my confidence by staying in bed, listening attentively.  He could make it.

He made the second step.  Ah, no worries.  He would make it.

Then he fell.  And howled.

At Great Wolf Lodge, the hours between 11pm and 7am are officially quiet time:  hibernation time, in wolf speak.  Well, we were certainly the unruly cub of the pack at that moment.  Gabriel's howl was loud and long.  Janette and I both went to the bed.  We quickly paired off:  her with Hannah (up now, might as well go the bathroom; me, with Gabriel.

"Gabriel, what hurts!"

"My back."  Sniffle.  Sniffle.  "Owwwww..."  He shook with still-not-awake sleepwalkiness.  He walked about easily.  I quickly checked his eyes, looked for blood, looked for quick bruising or anything serious on his back.  Nothing showed. 

He and I talked further, but he really just wanted to say "Ow" and crawl back to sleep (in our bed instead, of course).  I managed to get him to take some ibruprofin, and I grabbed some ice in a bag from the vending machine.  I set the ice in a towel and layed it across his back.

"Thanks, Dad."  And then he was back asleep.

He woke easily the next morning, not stiff, but a little out of sorts.  All seemed good:  at least no concussion.  On to the next day, our second day of family vacation.  At this point, I was sure we had paid our unseen companion, the peculiar vacation gremlin, its toll for this vacation.

I was, of course, wrong.

-- Dad 

Posted by Dad at 02:25 PM | Permalink | Comments (2) | TrackBacks (0)

Since the play-structure was done I've been brainstorming on adapting it for Hannah.  The first point of order is getting the swing area friendly for her.   When I would stand her and lean her against the swing  like in the following picture there was a 50% chance her g-tube would fall out. 

This was a bit stressful.

Every time I would look at swings for people with disabilities most of them would come with a heavy price tag.  Things ranging from thousands of dollars for a swing one a person rolls a wheelchair onto to others that had a three hundred dollar to six hundred dollar price tag for the support Hannah needed to be independent in a swing.

So I came up with an idea of buying a rock climbing harness for Hannah and attaching that to the swing set.  The harness was around seventy-five dollars.  The carabiners or rock climbing clips were around seven to fifteen dollars.    I got everything attached and it worked pretty well. 

We could work on standing along with swinging without killing my back.  The only thing is I still had to be right with her and she kept wanting to do back bends where she could fall out.

So I was looking for something else the one day and found the perfect swing for a reasonable price.  I asked the grandparents if they were interested in funding it.  They said sure.  So now Hannah has a great swing.  It is meant for indoors so I disattach it and reattach it as we use it. 

-Mom

PS.  So my next step is to develop a pulley system for pulling her up the slide and eventually into the swing.  I will be using the rock climbing harness for that.  As I was researching links for this site I found a better rock climbing harness idea.  I think it will end up on Hannah's Hanukkah list.

Posted by parents at 10:37 AM | Permalink | Comments (2) | TrackBacks (0)

Last week, I took Hannah to see a children's rehab specialist.  She has great ideas for dealing with children who have low muscle tone.   I told her the drama we've been through.  She listened attentively.  She let me know that she found this issue important.  She agreed it was gas pain, and she actually offered some ideas to fix it.

She started by saying that we were on the right track with our formula concoction of prune juice, Activa and Pedisure with fiber.  She agreed that Miralax was a bad idea.  She wanted me to move the senna to a different time.  That night she wanted me to give Hannah an enema.  She was shocked in all my past medical experience with Hannah I had not given one yet.   So I found out that there are pediatric enema's available over the counter.  So cool.  

The next 5 nights she wants me to give Hannah a  pediatric glycerin suppository.  (I didn't even know there were pediatric suppositories I've been cutting up adult ones.)  She says the idea  is to clean her completely out and then train her to have movements the same time everyday.  

So far things are going well.  The night I did the enema she did not wake once screaming.  Usually, she cries about every 2 hours.   We all got a great deal of rest.   The next night she has some discomfort about 5 times and last night the timing was completely off.  She had a huge blowout at 3 in the morning.  

I feel relieved that we are working towards resolving this issue.

--Mom

Posted by parents at 07:22 PM | Permalink | Comments (1) | TrackBacks (0)