Last Tuesday, I threw a  role of silk medical tape at Robert.  It's shocking I know.  I couldn't believe I did it.  I knew it was a bad idea as my hand found the role and tipped my arm back. “Why, are you doing this Janette?” I thought “Violence is never the answer.” I didn't seem to care.  I did it. I think I missed I remember it's trajectory heading to his right.

Robert's response was serious “I don't like things thrown at me.”

I sighed. He was right.

All I knew was I was done.  I had been comfortably curled on the couch ready to veg out and watch some inane sitcom. I didn't want to be outside in the cold and dark hunting for tape. 

It all began approximately nine months ago.  Hannah was old enough to qualify for a project to help make the house wheelchair accessible so she could exit and bath safely.  This is a big issue for people caring for a person who can not walk and is getting older and bigger everyday.  I started the gears turning on this.  It is a long process involving quotes and government board approvals. 

Meanwhile, my father has been requesting a visit for over six years.  He lives in Florida, and we live in Oregon.  With Hannah's medical issues (and sitting still issues) it seems baffling to me on how to accomplish it.  Hannah's breathing has improved so much over the past couple months it seemed feasible though.  So we agreed on a date and I started the process of figuring out the logistics of the trip.

On top of this at the beginning of this year, our Private Health Insurance changed. They misunderstood the type of food Hannah was taking through her G-tube and decided it was available over the counter and rejected paying for it.

OK, so the remodel stuff got approved the week before Martin Luther King Jr's birthday.  Meanwhile we had planned for our Florida trip to be during the kids Spring Break March 16-25.  Since there would be  some demolishes I planned for the contractors to come the week we were gone with my father in-law supervising.  While this government contract was happening, we added doing all the floors with wheelchair friendly flooring so it could all be done at once.  I spent the weeks after the remodel call packing up the house, arranging travel plans and discussing the rejection with the health insurance company. 

We returned to a hotel room from the trip, our first night we moved back into the empty house was last Tuesday.  I had silk tape in Hannah's bag for her pulse oximeter.  A nurse who was just trying to be helpful  decided the spot I keep the tape would be a good place for the power cord.  It is a small space. She managed but didn't tell me where she put the tape.  Normally this isn't a problem but, when your house is in boxes and not all you packed, it can be a problem.  We needed the tape to put on Hannah's Pulse Oximeter while she sleeps.

So anyway, I was done.  Robert picked up the tape and walked to Hannah's room.  When he came back he said “There was tape on Hannah's feeding pole.”

Inside I was laughing hysterically, outside I looked at Robert and said “Of course.” I looked back at the TV.
--Mom

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Last week Hannah got to try the Spectronic DynaVoxVmax eyegaze communication device at school.  It is a device that allows the calibrated person to use her eye gaze to make a selection of what she wants to say, and the machine will say the words for her.  (Really, really, really, cool technology)

Hannah is using her hands more, but she is still very leary of using them for anything besides batting at objects.  She has preferred to use her eye gaze for making selections and communication. 

So, four of us gathered in a small room with Hannah.   The system was set up.   Hannah followed the directions to calibrate the machine to her.  She patiently went through the exercises. 

The product rep started with one image that represented someone jumping.  If she made it say “jump,”  I would jump.

The first time she did it, after I jumped, she couldn't stop laughing.  The adults in the room asked her to push it again.  Because it was hilarious.  She tried, but she was laughing so hard, and she has huge cheeks that narrow her eyes, so when she laughed, the machine could not read her. 

Once she calmed down, she did it again, I jumped again, and she laughed some more. 

The rep added more commands.  There was a button to pat my head and one to clap my hands.  She looked at whatever one they asked her to do.  Everyone did all the commands except the jump command.  Hannah would also clap as she would look at the clap command.  She loved it.

Next they tried a bubble button.  Hannah is interested in bubbles, but not as much as most kids I've been around.   There was a blow bubble button.  This was hard for me to do on command.  My timing never seemed right.  There was a catch bubble command.  Again my timing was off.  Then there was a pop bubble command, and the bubbles usually decided to disappear before that was implemented.  She was patient through this exchange.

Then it looked like they were going to find something else to try.

Hannah took over.  She found the button that said “I need help”

We all paused.

She found the button “Please”

She went for a button with a bathtub on it but it wasn't the one she wanted she shook her head.

They had her restart.

She started at “I need help please”

Then she found “I have to go to the bathroom.  I need help please.”

We acknowledged her request.

She found “Thank you.”
I teared up.  Hannah teared up.  I took her to the bathroom. 

--Mom

Posted by parents at 09:07 PM | Permalink | Comments (4) | TrackBacks (0)

Several days ago, Gabriel woke up and told me he was pretending to be boring man.  He was just laying there and staring into space.  It seems he had it down pretty well.

“Do you mean the kind that makes holes in the ground or the not so interesting type of boring?” I'm a mother. I have to increase his vocabulary definitions. It's somewhere in my blood like hugging him when he is hurt.  I must try to turn every moment into a teaching moment.  I know it drives him crazy.

“Pretend I'm wearing all brown clothes, Mom.”

It was morning, and I was running around like a chicken with its head cut off.  I was getting Hannah ready, trying to eat something, and make sure I knew what he was doing after school that day.  I looked at him smiled and said, “OK.”

He wandered back to his room.

Once I had Hannah in the family room playing with a toy and actually sitting to eat my breakfast, he came through with his dream journal.  “I'm going to write boring man stories in my journal.”

I was interested.  Most stories that are captivating to read are not boring.   He opened his book and wrote in under a minute.  “OK, I finished my first story.  Mom, do you want to read it?”  He was trying not to giggle.

I came over next to him.  “Of course I want to read it.”

He wrote:

“The Boring Stories
Once upon a time.
The End”

I laughed.  Hannah pulled the toy she was chewing on out of her mouth and laughed, too.

“Did you like it, Mom?”

“Yes, very funny.”

“I need my book back. I need to draw the Boring Man Comic.”

I handed him the book.  He proceeded to draw for about a minute.

“I'm done.  Do you want to see it?”

“Oh yeah, I do!”

--Mom

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So Friday October 30th Gabriel woke up with a fever, sneezing and looking like a zombie.  Hannah woke slowly and was in a cuddling mood.  Her normal temperature is 95.6 but she was 98.7 so she had a fever going to.   

I called the school to report that they weren't going to school and got ready for the long day.

We had plans for Halloween.  We were going to go to the Portland zoo and trick or treat through the park during the day. 

Saturday October 31th,  Gabriel vomited.  Hannah hadn't shown any more signs she was just frustrated with being home.  So we made it a day of scary movie watching.  Disney Halloween town marathon and we introduced the kids to Beetlejuice.   Robert kept teasing he was going to put on Poltergeist or Alien.

Trick or treat time came.  I looked at Robert “I think Gabriel is going to be trick or treating in our hallway.”  Robert nodded.  We had discussed this plan earlier that day.  He had gone out on a reconnaissances mission to buy special treats.

So we dressed the kids up.  Robert took Hannah out to several houses on the block  because she really seemed fine.  I would let Gabriel stare out the front window in his vampire costume (his sunken eyes and paleness really added something to the costume) and wave to his friends when trick or treaters came to or door.

When Hannah and Robert returned.  Robert went to our bedroom.  I grabbed a ton of hats from the kids  dress up box and delivered them to the bedroom.  Robert looked amused.

So I gave Gabriel a bucket and carried Hannah to the master bedroom door.  Gabriel knocked.  Robert opened the door slowly and pretended to be a stooped elderly man constantly repeating “Only one.  You can only take one candy.”

Me and the kids laughed. 

Robert closed the door.

Hannah complained.  I opened up the door picked up Hannah and placed her on the bed.  “You have a helper.”  Robert started conspiratorially talking to Hannah about what he was going to do next.

Gabriel walked the loop that goes from our hall to our front room, living room, through the kitchen and back to hall holding hands. We were pretending we walking to another house.  

Gabriel knocked again. 

Robert wore a sombrero  he talked to us in Spanish.   “Uno,  Uno, Uno!”  he repeated pointing at the candy.  Hannah tilted her head and laughed.

So the pattern repeated.  Robert was a pirate, deranged rabbit from the holy grail, a tiger and finally a headless man.  

Gabriel, Hannah and I laughed so hard. 
Later,  he told us it was the best Halloween ever.

--Mom

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The universe did not want Gabriel to turn in his homework last week.  I had to learn to accept that. Poor, Gabriel has two over achievers for parents and homework timeliness in important to us.  

Last, Monday, Gabriel had an extra science class after school, so Hannah and I went to pick him up.  Normally, he takes the bus to an after school club.  I was feeling exhausted and the thought of taken him somewhere else and picking him up again seemed daunting.  So I said “Why don't we head home?”

“That sounds great”  Gabriel smiled  “I have stuff I want to do at home.”  then my mufflers came up he started talking about Bakugan, Pokeman and Goosebumps.  The only three subjects he seems able to have a lot to say about and trust me it is not that interesting.  (I mention to him constantly that I love Spore, but I don't talk to him endlessly on the subject.)

“You can't do any of that till you get your homework done.”

“Right”

We headed home and got through the what's for snack debate and then sat down to get his homework going.  At the beginning of the week Gabriel gets a pack of math work due that Friday, a spelling word list and a daily reading/writing assignment.  That Monday he got some uncompleted class work too. 

I went over again how he needs to get work done in class.  This has been a problem since Kindergarten,   he will actually debate any subject with me for thirty minutes then just get a project that takes at the most fifteen minutes for him to do.  I find it draining and annoying. 

He started the math work.  This conversation was interesting,  it was on graphing and he was filling me in on his techniques on how to get this done quickly.  I just nodded “Great idea Gabriel.”  Midway through I needed to remind him to sit so he wasn't falling out of the chair.  He got the first two pages done.  He read me and Hannah a book on the history of popcorn.  Truthfully, I didn't know all that stuff.  Of course after Homework time we were going to have to make popcorn. 

We got all that needed to be done, and left two pages of math for later that week. 

I made popcorn with an air popper exciting him and the night progressed well.

The next day, he went to the after school club.  When I picked him up he told me he finished his math.  When we got home I checked his homework folder.  There was reading homework to sign off on and flyer's for field trips and school stuff but no math homework.

“Gabriel where is your math homework?”

“Oh, “T” has it.”

This is bizarre T doesn't even go to the same school as Gabriel.  “You need to get it back tomorrow. OK!”  I had a ton of other questions but decided it was a seven year old buddy thing.  T and him were probably participating in some sort of boy teasing friendship ritual.

“Yes, Mom.”

So it nagged at my brain but it was only Tuesday so there was time.  Besides we had Cub scouts to get ready for so I let it go.

I reminded him the next morning. 

When I picked him up he told me he got it back it was at the front desk.   I found that odd.  What is going on.  So we went home and I went back through his folder.  It was missing.

“Gabriel you homework isn't here.”

“What?  I put it in my backpack.”

“It's not here.  What is going on?”

“I think “R” went through my backpack and took it.”   I took a breath.  My parent senses were tingling.     We had taught him to share, we taught him to be guarded with his body, we hadn't taught him to demand respect with his personnel items.  I was starting to think there was more to this then friendly teasing. 

 “They should not be going through your backpack.  It is OK, for you to tell your friends to leave your homework alone.   They should not be taking your homework..  It is your responsibility Gabriel.  You need to know where it is.”   It was Wednesday this alarmed me.

Since, the day before it ended up at the front desk.   I called the club to ask if they had seen it.  While I was on the phone the story changed.   “Gabriel where were you when you last saw it?”

“By the front desk,  I had to tape it up.”

Internally I was going “What?”

The women on the phone was looking while I was still trying to ascertain what had happened.  “Why did it have to be taped up Gabriel?”

“Well “R” was stepping on it and it got a hole in it”

I believe I rubbed my forehead with my right hand in aggravation.  While the women on the phone told me she couldn't find it.  I realized this was not the time to figure out what had happened.  I put a finger out to pause Gabriel.  Robert was home by this time and offered to let me go look.  “How late are you open?”

“Eight” the women said.

“May I come look?”

“Sure.”

I went and looked in all the rooms he mentioned.  I went through the trash and recycling.  Meanwhile, my head was going through scenarios that involved teasing, and destruction of homework.  In the end I knew it was Gabriel's responsibility.  He needed to tell an adult when the situation was happening not hours later.  I didn't find it.  I smiled and thanked the coordinator.  “Just so you know this is the second day in the row he has misplaced his homework.  He wont be coming tomorrow.  He needs to understand that he's got to keep track of it.”

She nodded

I went home.  Robert and I took away his video game privileges.  We reiterated that his backpack was his and no one else should be going through it.  It was OK to tell them to stop.  He needed to keep track of his homework.

I emailed his teacher and sent a note requested a new math packet.  I offered to print emailed copies, because as you know the school budget is tight.  Every piece of paper is counted.  (Gabriel's homework last year got reduced because they could not afford to print as much.) 

He was sent home with a new packet.  We redid it that night.  The next day Gabriel had a fever and could not go to school.  His homework was not turned in by Friday.

I really tried.

--Mom

Ps. I tried to scan them on Friday by email.  I got called to nurse Gabriel and Hannah and never came back to the computer room.  The pages were still in my scanner this Tuesday.

Posted by parents at 10:35 AM | Permalink | Comments (2) | TrackBacks (0)

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)

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)

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)

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)

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)

I need to talk to a dietitian for sure.  I'm feeding her through her g-tube: Pedisure with fiber, prune juice and Activa.  Plus she is taking senna for help with motility.   The matter is soft enough when it comes out formed, but it collapses with the slightest pressure.  We did try polyeth glycol with disastrous results we ended up with runny stool all day long that she could not even tell was coming out.

So I'm putting this out there.  Has anyone else dealt with these issues?  If you have any ideas let me know. 

--Mom

Posted by parents at 07:58 PM | Permalink | Comments (0) | TrackBacks (0)

It used to happen for a couple hours at night.  Then it starting earlier and lasting longer.  Her legs stiffen too now.  Robert and I are speculating seizures, undiagnosed something new, complications in bowels or another ovarian cyst.

This week, the right side of her abdomen definitely has a lump, and it is causing her pain and bowel obstruction.   Tomorrow we are having an ultrasound done.  There will be a discussion with her surgeon.  If it is her other ovary, Robert and I have a lot of life ramifications to confront for Hannah.

--Mom

Posted by parents at 08:09 PM | Permalink | Comments (2) | TrackBacks (0)

Since I built the play-structure in the backyard, there was an image in my head.   I wanted to put a waiting pool at the end of the slide and let the kids slide into the pool.  I get a magazine called family fun and it showed this idea for summer fun.  I would stare at this article and plan.

So this summer I bought a wading pool.   I put it at the end of the slide.   I called the neighbors and invited their children over.  My backyard would become a calliope of delighted screaming children.  It was heaven.

--Mom

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Several months ago, Robert started talking to me about a new Wii game coming out.  This game he thought would be great for the whole family.  The game was called Beatles Rock Band.  I had seen those Rock Band games and thought they looked fun, but the cost of the guitars and drums seemed prohibitive. Besides, most music things these days have stuff on them I've never heard of.

I thought about it.  We have sung Beatles songs to the kids since they were newborns.  I enjoy singing those songs over and over.  We have been trying to find a way to incorporate Hannah into our gaming time. Robert was right this could be a fun game.

So last week, after telling our kids religious school we could not afford $415.00 per kid to attend Sunday school, we decided to make a more affordable investment in a family cultural activity.  We bought the $140.00 package of Beatles Rock Band.  Its guitar doesn't look like any of the Beatles guitars, but it all works.

When we got home, Robert unpacked the mike and the game and started to play.  As I assembled the drums and guitar, I looked up to see Hannah shaking her head to the beat as she rocked out to it.

Once Robert and I started playing together on it, I could hear Hannah laughing in rapturous gasps.

It's becoming a once a night standard in our house.  Maybe someday I will get beyond 20% with the drums and 40% with the guitar.

--Mom

Continue reading "Hannah in the Living Room with Beatles" »

Posted by parents at 02:34 PM | Permalink | Comments (1) | TrackBacks (0)

I find being a parent in the modern age can be daunting. There is advice everywhere on how to parent. Messages flying everywhere from every age at once in an alarming speed. Commercials trying to sell me toys talk about developmental steps. Parenting magazines focus on strategies on how to modify behavior. Television shows encourage me to make super smart children that know how to read and write by Kindergarten. Other shows focus on social behaviors emphasize I should make my children into the perfect empathetic people who let everyone else get away with bad behavior. Then there is everyone I know. The older generation, other parents and the most comic of all the people who don't have children have messages of how I should parent. These messages swirl in my mind as I try to raise my kids.

Having a child with disabilities have added another level of messages. I have doctors, nurses, physical therapists, occupational therapists, surgeons and educational professionals giving me advice on how to manage my daughters care. Anything about caring for a child involves parenting.

I understand that most people are trying to be helpful. There is no malice in their intent. But certain groups of these professionals like to throw a level of dire urgency to their causes that is uncalled for.

When Hannah was around 7 months I had a physical therapist tell me if she doesn't start working on walking now, she will never walk. We had just finished the 3 month stint of living in the hospital with Hannah newly tr ached and ventilator dependent. The level of exhaustion I was at, is too much to write about now and totally off topic. Currently, Hannah doesn't walk but I see improvement every day. She is baring weight longer and starting to move her legs with out me pushing her too. I think eventually it will happen.

The funny thing is I find the doctors and surgeons my allies. They shut down the swirl of conjecture with a wave of their hands and a shrug.

They remind me of certain truths I have found out about life that work for me. They are messages my rational brain tries to get through to me. Life is about living. Nobody is perfect. Nobody has all the answers. Nobody knows the future. The most important thing is to guide my children to finding their way in society. That involves letting them know they are loved. It is OK to let them know I'm only human. Everyone has their own rate of learning. Worrying doesn't solve anything. Oh and most important, If you don't get enough sleep your coordination sucks and helping someone with physical therapy doesn't work so well.

--Mom

Posted by parents at 07:40 PM | Permalink | Comments (5) | TrackBacks (0)

Truthfully, I thought this was below her level. She had been using pictures to represent things like songs she wanted sung since about 12 months old. She was using her pulse oximeter to get my attention since 6 months. (She would purposely kick her feet to make it go off. When trached, a person can cry but no one can hear you. If that didn't work fast enough, she would take off her ventilator which was even louder.) I went along with the base trainer because I thought they were the professionals; they know what they are doing.

A couple months ago, I read a book recommended to me by Robert called Schuyler's Monster by Robert Rummel-Hudson.

It changed my perspective on what was going on with Hannah's communication device. I realized I was not communicating effectively or correctively with Hannah's speech team.

After this book, I put some calls out, “Can she try the more complicated machines? She has not been exposed to them. We don't know if can use them if she doesn't try them?”

The main answer I got back is, “She needs to push those buttons and show us she making a choice. She needs to show she understands the abstract object to picture idea”

“She makes choices all the time. She pushes buttons all the time. I think she wants more from a device then picking out a toy or activity.”

“We haven't seen that.”

I then cited examples, “If I put her DVD wallet in front of her, she will look through the pages, and she lets me know which one she wants to watch. She has done this with books, toys and clothes since very young. She has a MP3 player made by playskool with a big button. She goes through pushing that to find the songs she wants to listen to.”

This was followed by a pause.

I finally said ,“I know that- in ten whole minutes once a month you get to see her you are not seeing the behavior you want. But I spend my days with her and she is past this.”

“OK, let me call some reps.”

“That sounds great.”

I, of course, had this epiphany at the end of the school year. Because of Hannah's age, we are switching from children's intervention services to special education service with Kindergarten. I think I will communicate better with them this time around.

Wish me luck!

By the way, if you need inspiration for dealing with your child's needs and the bureaucracy around us all you need to read Schuyler's Monster by Robert Rummel-Hudson.

--Mom

Posted by parents at 06:30 PM | Permalink | Comments (2) | TrackBacks (0)

“Hey Mom, I've invented a new game like rock, paper, scissors do you want to learn it?”

“Sounds great let me get these groceries put away first, okay.” I bent down and grabbed a container of blueberries.

“So here how it goes.”

He continued to talk, I was trying to put the groceries away while starting Hannah's feed. There were messages on the machine. I'm horrible about messages I needed to listen to them. As I started the microwave heating up Hannah's water I heard Gabriel say.

“So what do you think Mom?”

“Gabriel, I need to finish what I'm doing first. When I'm finished you can tell me about it. I'm thinking about a few things I can't listen to you right now.” I know this from experience where I have been distracted by Gabriel and throw Hannah feeding schedule an hour to half hour off.

He began again explaining right after I started the message machine. So I realized a friend had called and got some of the instructions for the game he invented. I put away the rest of the groceries. Then I realized I'd only done Hannah beginning flush. (When feeding directly in a feeding tube a certain amount of water is required for digestion before and after. Since it cleans the tube in the after it is known as a flush.) Gabriel continued to talk it sounded elaborate. Hannah was interjecting yelps and giggles. I went to get the feeding pump from Hannah's room. I set it up in place. I realized I also needed to fetch a new feeding bag for the day. It is something I could of grabbed when I got the pump.

Gabriel was still going.

“Gabriel, I really need a few minutes please, I want to listen. I need to get Hannah eating and start your lunch.”

He kept going. I sighed internally trying not to feel like the worst mother in the world. When I was younger I could of listened to him, stay on task, and not got distracted. (Oh, I just realized my blood sugar was most likely low too. That does make multitasking difficult.)

So I realized he was just going to keep going and I was going to ask him to repeat it all. I had already warned him several times that I could not focus on what he was saying.

Eventually, Hannah was contently chewing on a duplo lego, Gabriel was eating a peanut butter sandwich and I was eating some soup.

“So Gabriel, what is this game your trying to tell me about?”

“It's called ghost, human and flashlight. Maybe you could write about it on the blog tonight.”

“Well see.”

“Ghost defeats human, human defeats flashlight and flashlight defeats ghost.”I was impressed. Internally I ration that a ghost would scare a human, a human can use a flashlight and the light from a flashlight traditionally defeats creatures of the dark. “OK, how do you show them”

He stood his index finger and middle finger on the table to look like a walking figure. “This is a human!”

He suspended his hand above the table with his thumb and index finger touching. “This is the ghost see it flies.”

He curved his hand with the thumb touching the index finger like holding a flashlight. “This is the flashlight he swiveled his had as if shining a flashlight.”

“Very cool, Gabriel!”

“That's not it. I set up a playing board. We each have an action figure behind blockades. When we loose either the blockade is demolished or one of the figures arms go up. When both arms are up on your figure is used up and you lose. Toss it into the box.”

“OK, let's try it after lunch.”

--Mom

Posted by parents at 10:34 PM | Permalink | Comments (1) | TrackBacks (0)

Once upon a time, there was a pile of wood, a woman with a dream, and not a whole lot of time.

This pile of wood had been plaguing her every day for three years. In fact, her dining room table had a panoramic view of the pile everyday. It made her sad.

She would look at it all day long, and it would say to her, “You're so messy, even your yard and patio is a mess.”

Most of the problem all along had been time. When she started, she had a very sick daughter. And some help. But not enough to satisfy the pile.

Every free moment was devoted to her kids, particularly her sick daughter. So the dream of turning the pile of wood into a play structure had to wait. And wait. And wait...

Then, two years later, magic fairies called Bubbie and Zadie moved into town. Both the woman with a dream and the wood pile became happier. Zadie pitched in about a year ago.

Then, on the fourth of July, the pile of wood, a woman with a dream, and a Zadie celebrated their new-found independence: a dream completed.

--Mom (Dad did a great rewrite)

Posted by parents at 09:28 PM | Permalink | Comments (0) | TrackBacks (0)

Today we went to a birthday party at a neighbor park in a Hillsdale community. It is a really cool park. It has a huge hill ridge going through its center. On the top plateau, there is an older play area with some new features. Its play structure is pretty new, but it also has a merry go round and teeter totters. I rarely find these two items in parks in our area.

The reason the family chose this place is that, on certain days of the week, the park service sets up a giant slip and slide on the side of the hill. It is extremely fun. I came prepared wearing a swimsuit for me and the kids' grandfather. Last year, I got Hannah down the slip in slide, but had no way to document it. Zadie was the camera man and helped schlep Hannah back up the hill

Gabriel giggled at me, “Did you see me I went down on my stomach?”

I smiled “It looked like fun.”

When I got to the top, I sat Hannah on my lap and started to push off. The mom of the birthday boy dosed me with dish soap. At first it was slow going; then midway down, inertia hit and we flew into an uncontrollable spin with a splashing finish. Hannah laughed.

Gabriel loved it, and by the third time down, Hannah was giggling at the top in anticipation.

--Mom

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

I was concerned it was a cyst in her ovary. I know she is young, but two years ago she had a mucinous cystadenoma in her left ovary. It was growing abscesses, affecting her bowels, and giving her pain. That ovary has been removed, but we have been having a yearly ultrasound to check on the progress of the other ovary.

Since she was going under for the tonsils, I went ahead and had the ultrasound done again. The doctors didn't see anything that they thought would be causing pain. I talked it over with her physical therapist who took Hannah through some muscular work out and determined it wasn't sore muscles. I took her to her General Practitioner with a tub of Hannah's pee. There were no pathogens and no blood in her urine, so there was no infection and no stones. So finally I went to the GI doctor.

She hasn't been stooling everyday for most of her life. She is more of once every three day type of girl. I have been supplementing her food with prune juice and acidophilus to help keep things moving. Still it has been an every three day occurrence, plus she usually started the stomach grabbing after the second day of not stooling. So the GI doctor suspects it's constipation and low muscle tone internally. He has changed her antacid to a laxative.

Unfortunately, the dose is not right, and Hannah has the runs.

Today, when Hannah was on the potty I heard her call “All done!”

I walked in the find her hand, cheeks and legs covered in brown, smelly slime.

“YUCK!”

Obviously the dose is too much and needs to be adjusted.

I wiped her down with a washcloth as I lectured her that her body is trying to get rid of this substance. It's not to play with and, wince, not to eat. I told her she can get real sick doing this as I turned on the water in the tub for her second bath of the day. I soaped her up and rinsed her completely down with the shower head. Then filled the tub with water for another bath.

Before I had kids I was terrified of poop.

--Mom

Posted by parents at 08:49 PM | Permalink | Comments (1) | TrackBacks (0)

We went to PGE Park the day before Hannahs surgery.  We got the tour the stadium and go down on the field. 

Posted by parents at 11:25 PM | Permalink | Comments (0) | TrackBacks (0)

About a month ago we took the kids to the OMSI, Oregon's Museum of Science and Industry.

Gabriel wanted to go in the planetarium. So did I.

Robert and I looked at each other. Whenever we have taken Hannah to a movie theater, she sits through the previews ,then has not been ready to sit through the movie. So we looked at the schedule and a particular show caught our eye. It was a U2 laser show. We bought tickets and decided who would take Hannah out when the fussing started.

We were lucky. It was earlier in the day, and there were only 5 other people waiting, one of which was a little girl about 2.

When the doors opened, we found seats next to wheelchair access. Gabriel kept telling Hannah, “We are going to outer-space!” based on his first planetarium show years ago.

The lights went out. I took Hannah's hand and tapped to the beat. She squeezed my hand tight. Then she took her other hand and tapped along to the beat.

Some of the images were alarming like robotic warriors and ruined cities. But the streaming light in a rhythmic flow captivated her. When the lights went out between songs, Hannah's giggle lit up the space.

We all got to see the whole show. Now I want to petition Laurie Berkner and other children's artist to do laser light shows.

Daddy of course made sure she got some U2 on her MP3 player.

--Mom

Posted by parents at 10:23 PM | Permalink | Comments (1) | TrackBacks (0)

This weekend Hannah's recovery took an ugly turn. On the morning of Saturday she was doing OK. By that afternoon she was retching. Since, Hannah has had a surgery to prevent vomiting it is terribly uncomfortable for her. To relieve the pain and pressure I do a procedure with her g-tube that involves me putting an open syringe at the end of the tube so air and liquid can move out freely. It is how we normally burp her. When she is ill it will include bile instead of just digesting formula.

We were lucky in that she had no blood leaking anywhere and no fever. When I got noxious too, I was pretty confident it was a viral stomach bug. My active little girl wanted to just lay and snuggle. In between the gagging. It limited what we did. Robert's father's day was not that fun for him.

By Monday, she was feeling better. Yesterday, we all got of the house. Today, we even had an adventure in a park.

Posted by parents at 09:55 PM | Permalink | Comments (1) | TrackBacks (0)

When I took moments to give Gabriel attention,Hannah flared out in a painful coughing fit that usually needed some g-tube venting, saline nebulize treatments, orajel and cuddling. Gabriel tried to stay upbeat and be more independent. I felt proud and tried to stifle my frustration when he pulled the DVD Movie case from a high shelf and spilled its contents all over the floor. I had to run and intercept him when he tried to pull his own toast out of the toaster oven. I got him an oven mit. In the end, of course, he did a great job.

He really is a great big brother and son.

Mom

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

Four hours after surgery on Monday, Hannah was up on her knees chattering at her ENT “All Done!”

He smiled at her graciously. “Yes, I know Hannah, but you need to stay over night. Keep doing well and you will get to go home tomorrow.”

Hannah frowned “ALL Done!”

He chuckled “I'll see you tomorrow, Hannah” he gave me a nod and walked out the door.

Hannah sat back on the bed and glared at me.

“Do you want me to hold you?”

She raised her hands.

I stood and started maneuvering the recliner the bedside table. I pulled the TV slash nurse call button control box over by where my head would be.

She became insistent “Uuuuuuuu Up!”

“Just a minute Hannah I need to arrange things.”

She fussed and fumed as I got everything in place. Then I pulled down the bed rail while I checked where her IV line was and her Pulse Oximeter cord was. Internally I mused how much easier this was without a ventilator, heart monitor, and a pic line.

I pulled her into a hug and was rewarded with a swift tug on my hair.

I sat her back on my lap with a blanket beneath her and a pillow under my arm. She snuggled in and watched her DVD player.

Twenty minutes later she was complaining. So we called in the nurse. She suggested a Popsicle stick. I moved Hannah back to the bed because she squirming too much to hold onto.

Hannah doesn't eat by mouth yet so this was bound to be interesting.

Mom

Posted by parents at 05:26 PM | Permalink | Comments (1) | TrackBacks (0)

I am a fantasy book reader. Unquenchable, in this genre is putting it lightly. Through our cable system we get the channel ION network. It is an interesting channel for me in that it plays some BBC stuff I don't even get to see on the American BBC network. One recent show was a film version of The Color of Magic by Terry Pratchett. I was excited! I love Terry Pratchett Discworld books, and I had no idea that it had been made into a video format.

OK, so the premise of these books is silly; they are set on a planet that is a flat, round disc instead of a sphere. The stories make fun of the genre, pop culture, and anything else the writer can throw in. Pratchett's writing style is similar to Douglas Adams, but he is much more prolific.

So I was watching the movie while Hannah was batting around a singing toy when Gabriel came and sat next to me. After a few minutes of questions and me rewinding to show him the weird point about the planet of Discworld, he started laughing.

“Is that a rainbow, Mom?”

“Yeah, Gabriel that is.”

“That is funny, Mom.  A rainbow couldn't curve like that on that planet.”

 I did a double take. I didn't know he understood color and light physics that much. I chuckled, too, in shock. “Your right, Gabriel.  A rainbow takes it's shape from the curve of the world.”

I guess my seven year old is absorbing some things in school after all.

--Mom

(P.S. the movie is not available for the American market.)

Posted by parents at 07:45 PM | Permalink | Comments (0) | TrackBacks (0)

Last week was Spring Break at our house. We started that Saturday with Hannah's birthday party with friends. I had hired her music teacher to sing for an hour at a conference room at the local gym. We had an amazing turn out of friends from school and the neighborhood. Hannah had fun rocking out to the live singing and guitar playing.

That night we drove to the coast and stayed in Newport at the Hallmark Hotel. Every room looks out on the ocean. I realized the kids have been kept home to much when Gabriel cheered at every change in the landscape to the coast. Sunday morning we went the the Aquarium. It was great to watch Gabriel and Hannah stare at the fish swimming around them in the tunnels. When we sat Hannah on the floor in one she tried to grab a fish swimming below her. Gabriel kept speculating on what the fish were thinking. “ Hey, have you got any food little boy?” thats what the say to me, says Gabriel.

Monday, we went to the children's museum. It was crowded. The kids had fun.

Tuesday, we had to take Hannah to a doctor appointments. That night we had their cousin with us too, so we went to Out of this World Pizza which has a 3 story play structure. The boys ran themselves ragged. Meanwhile I climbed up the structure with Hannah to take her down the big slides.

Wednesday, I went to take them to the OMSI but, the line was way to crowded so, we did a trip to their shop and headed to downtown Portland. This where we had a fancy lunch at my favorite restaurant, Jake's Grill and stopped by Finnegan's, a classical toy store.

Thursday, we went to the zoo. Some of our neighbors met us there and it was great to watch my children actually look at the animals. Gabriel usually is more interested in climbing things and operating the doors.

Friday we rested.

By Saturday we were all sick.

I think the kids had a good spring break though.

--Mom

Posted by parents at 08:23 PM | Permalink | Comments (1) | TrackBacks (0)

Sure Hannah's birthday was on the 12th and we are having the party with friends from school and the neighborhood tomorrow.  Logistically, it was the only way I could swing it.  I hope she enjoys it.  We hired her music teacher to come and play guitar live while she sings. 

I bought some cardboard guitars for the kids to decorate and dance with.  It will be instead of a goodie bag.  My goal with these things these days is to give the kids something to play with that they can recycle when then done with it.

So in honor of the party I wanted to post a collage showing Hannah over the past 5 years.

It amazes me how far we have come.

--Mom

Posted by parents at 08:27 PM | Permalink | Comments (1) | TrackBacks (0)

It is a cool toy. Unfortunately, I don't think they marketed well. It has this big screen in the middle and huge cartridges for licensed characters. When I first saw it I thought it was just a player that rolled preprinted scrolls back and forth along to music. I was wrong. The screen in the middle is a touch screen and it responses to whatever in the picture you are pointing at.

Hannah loves this toy. She will lay prone to it and sign for it to sing then hit at the screen. She will stay focused on it for hours. If she finds a cartridge she hits at it to do the same thing.

So the reason we need a new one is. Hannah's sign for singing is unconventional, she beats at her mouth. This causes the saliva to flow. So after about a year of use it has a short and will stay on one note in annoying siren type sound.

One of the problems I had with this toy's marketing is it was only available at Toys R Us. That is a pretty far drive for us. They are usually not as available to the toy buying market as say a Target is. The other on problem was the original display didn't show the touch screen application so I believe many people wrote it off like I did originally.

So, Toys R Us was out and it looked like it was being discontinued. “Sigh!” So I called Zadie, Hannah's Grandfather and presented him with the mission. Because I had heard that another store in the state might have a few left. Zadie ended up finding a couple on line. They are really cool they have Laurie Berkner Cartridge in them. I'm hoping that Fisher Price is just making way for this version in the stores.

--Mom

P.S. Hannah's speech specialist thinks I should do a review of toys on how well they work for Hannah. Would any of you find this useful?

Posted by parents at 03:23 AM | Permalink | Comments (2) | TrackBacks (0)

When we went to Kidfest last weekend, Hannah and I sat down to listen to some of the live music on the Disney radio stage.  

We got a treat of hearing the boy brother band called the Boyle Brothers. They were highly polished and hit every note.  Their harmonies were always right on. Even though the crowd was small and sedate, they were energetic and gave their all with genuine smiles on their faces.  It seemed they were happy to perform.

Hannah ate it up she even had me take her out of her chair to dance.  Afterwards, I took her to their booth and bought their CD and got Hannah an autographed photo.

Hannah is still enjoying them on her MP3 player.  

--Mom

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

A few weeks ago Robert and I sat in the entry-way to Gabriel's school. We were waiting to be escorted back to the resource room to check out things for Hannah next year.

Robert smiled and looked at me. "Gabriel's not in the principle office while we are here. That is good."

I laughed and said "Yeah." I shuffled my feet then looked up to see a gentleman approaching.

"Are you Mr and Mrs Bach?"

"Yes." Robert and I said in unison.

"Hi, I'm the temporary principal today. I just had Gabriel in the office."

We had spoken to soon.

--Mom

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

Our home is open planned. The family room, dining room and kitchen are one big room. I like this because I can do food prep while the kids are in the front room. Before we moved into the house Gabriel was 9 months old and just starting to walk. I took the opportunity to child proof the house. Every bookcase is anchored to the wall, all the plugs are covered or tricky to get into, all lighting is done from the ceiling with no need for floor lamps, all entrances to the house lead to linoleum for easy mud care and the carpet is the thickest pad possible for soft falling. I wanted the home to be child friendly. I figured that outside would have enough "No!" and I wanted it to be serious when I used that word. The family room is essentially a playroom with a couch and a Entertainment Center. I figure that my kids are only so young for such a short time I really don't need an austere "Adult" sitting room. Our family room is the hub of the house and where we all spend the most time.

About a week ago Hannah had had enough.

Every morning when we wake I take Hannah to the bathroom and clean her up while she uses the facilities. I usually ask "Do you want to go to the front room?" She usually cheers and protests if I take her back to her room briefly for something I forgot.

A week ago, I didn't happen to ask. But when I brought her to the front room she cried layed on the floor and rolled onto her stomach. She hid her face.

I was groggy yet concerned this was not normal behaviour for her. I started closer examination. I found her left ear full of dried blood. Wait, don't be alarmed since she had tubes in she has granuloma's in her ears. They just randomly bleed but, if unattended it can lead to some uncomfortableness or infection. She also had a molar crowning on the same time. So I hugged her and fused over her as I proceeded to clean the ear out. She cried with actual tears, this is rare. When I was done I tried to hug her but she kept turning to face down. So I rubbed her back and figured she was in pain. I gave her tylenol and layed next to her as I put on her favourite TV shows. She layed there. I was concerned when a hour had passed and she had not perked up.

Internally, I cancelled all my plans for the day and thought I would be making a doctor appointment soon. As the day progress she had no fever but she did not perk up. Eventually, I took her to my room and set her on the bed while I was putting away laundry. Suddenly ,she was up and moving and chatting. I was relieved. But when I took us back to the family room she layed proned on the floor screamed and hid her face.

So I did, a experiment. I tried other rooms she was fine but the front room held no happiness.

She was protesting the front room. She wanted a change.

This went on for three days. We had some major outings and the whole thing cleared up. Cabin fever is not a fun playmate.

--Mom

Posted by parents at 05:21 AM | Permalink | Comments (3) | TrackBacks (0)

"Mom, do you think God is a boy or a girl?"

I was sitting at the dinning room table eating something when Gabriel asked me this question. I took a swig of tea, trying to swallow what was in my mouth. This was another moment that I love as a parent, but I had a lot of thoughts to put in order.

Some background: we are Jewish, and I officially converted before Gabriel was born, but I was raised agnostic. Wait, it gets better. Judaism and agnosticism work well together, but for raising a seven year old spiritually in a specific religion, it can be a hurdle. I want him to think for himself, so I approach these issues with a kind of open-ended-guided-thing that can be a real dance for me mentally.

So for this question, the first thing I did was throw out my baggage and really analyze Gabriel's question.

I started by throwing the question back at him, "That's a good question." I looked him straight in the eye. "What do you think, Gabriel?"

He looked up at the ceiling, thinking, and swayed against the dining room table on tiptoe, "I think he's a boy."

That makes sense: you are a boy, I thought. All the stories you read use the word "he" when talking about God.

He looked back at me, "So, Mom, what do you think?"

I felt free to give my opinion. "I think God is whatever it needs to be. Maybe it's both genders. Maybe there is a totally different gender possibility. Or maybe it's no gender at all."

He took it in, "Mom, can I play Wii now?"

"Sure." I went back to eating my food. So much for The Moment.

 --Mom

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

When we go out to eat at restaurants, Hannah does not have fun. She, like most young children, wants to move about. Since she is in a manual wheelchair, it is usually up to us if she gets to move. She doesn't eat by mouth yet, and she is still in the finger painting stage with food: something very hard to clean up when out and about. We are trying to teach her manners, so we talk and sing to her till the food comes.

Then we pull out the miracle of the modern age. It is called the portable DVD player. I get to have a chat with adults and my husband while we eat. It is such a novel experience.

It works in other situations too. Anything that involves waiting in one place, such as a doctor office, coffee shop, and synagogue.

So I tell people yeah Hannah use to be ventilator-dependent, now she is DVD-dependent. It is a lot easier to transport.

--Mom

Posted by parents at 07:35 PM | Permalink | Comments (3) | TrackBacks (0)

Next month we are having a transitional meeting about Hannah's goals and her transition into Kindergarten from preschool. It is exciting and overwhelming. We are going to put her into the public school my son goes to. We have some hang ups to get past. I really haven't seen any children that experience disabilities matriculating in activities. Some of the moms that live on my block that I talk to were even surprised to know there was a self-contained classroom there. It is a bungalow to the side of the building and I'm not sure the kids interact with the typical population.

Needless to say, I anticipate some interesting discussions.

This reminds me of a conversation I had recently. Let me start by saying that I was raised by a Marine and an Engineer. Most conversations when I was a child were all about the facts and sticking to the truth. There was no sugar-coating conversations. Usually when I'm dealing with very real issues I feel strongly about, I'm a little blunt.

So I met a women at a gathering whose child has Down Syndrome. She was talking to her friend. (Some of these things can be cliquey) They were across from me. I wanted to network, so I butted in because the women seemed really agitated.

Me: "So what is going on with your daughter's friend?"

Women: "My daughter just started kindergarten. She has a friend in class who likes to try to help her out. But my daughter wants to be independent, so she snarls and growls at her friend."

Me:"Wow."

Women: "Her friend's mother called me to say she was afraid her daughter's self esteem was being affected by my daughter's behaviour. Can you believe she tried to pass off the guilt to me. I have enough to deal with trying to keep my daughter in an integrated classroom!"

My first thought is Wow, this woman is reaching out for help from you to tell her daughter how to handle this behaviour. Wouldn't it be great if more parents could feel that comfortable to help with behaviour. I understand her misunderstanding, but when I talk about the wrong thing, her eyes narrow as I talk.

Me:"Your daughter needs to know that behaviour is not ok. You need to tell her that and especially her friend needs to let her know that. Especially her friend!"

Her face turns sour and she glares at me.

I shrug and say "You might think differently, but that is my opinion." I feel eye-daggers in my side as I turn to greet a friend who has arrived. Inside, I fume. She wants her child integrated, but she doesn't want to teach social rules. That is a disservice to her daughter. I further speculate that it must be because it is her only child. We all have to deal with those same issues with every child. Gabriel was three when we had to let him know biting wasn't appropriate. Hannah is still slipping ,but she does know it is not an OK behaviour.

So when I have the discussion with the school's staff, I plan have a what-can-we-do mentality instead of this-must-be-done-because-my-child-is-special approach.

--Mom

Posted by parents at 08:33 PM | Permalink | Comments (0) | TrackBacks (0)

Once in a while, I end up in the same conversation with different people. It is not one I mind, but, it is interesting to watch their reactions to the information I provide.

Person: "You mean you didn't know anything about any of this before Hannah was born."

Me:"Well I knew she had a twisted leg. They were ultra sounding me all the time due to my age and the fact I get gestational diabetes."

Person: "So, is there any way to know..." usually an uncomfortable pause is inserted here "what happened?"

(I shrug and then I start commenting on the unasked questions)

Me: "She has no official diagnosis that encompasses everything, and her chromosomes are the normal number."

Their eyes usually role in disbelief at this point.

Person: "Is she your only child?"

Me: "No." either I point at my son running around or pull out a picture of him.

Person: "Did you do everything the same with both pregnancies?"

I smile.

Me: "Everything was the same." Then I start listing things they didn't want to know, and I'm always happy to volunteer. "I made sure I was on folic acid before conception. I never drank alcohol or even took over the counter medication. I have never smoked in my life. I ate organic the whole time. I only cleaned with vinegar. I did not consume caffeine." (If it was a doctor I was talking to, I always included that I've never done illegal drugs.)

The person usually looks phased and seems at a loss for words. I always smile inside. I was once like them believing everything had some direct causal influence.

--Mom

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

Posted by parents at 10:28 PM | Permalink | Comments (0) | TrackBacks (0)

Last week, Gabriel and I had a trying time one day after school.  I directed him to his homework like we always do.  I was pretty sure it would be fast and sweet because it was math.  He is doing math all the time right now in his head.  Unfortunately, it was one of those work sheets with 4 possible answers that went with a colour code to create a picture with the spaces that individual math problems resided in.  He decided that if he just coloured in the corresponding space with it's colour he didn't need to actually write the answers. 

Truthfully, my little lawyer was right the only directions on the page were to colour in the spaces with the designated colours, but I know that  one of the school districts big goals this year is to improve everyone's handwriting.  Writing the numbers was definitely part of the assignment.

"Gabriel, you did great, you only need to write the numbers down." I leaned down and pointed to the empty spaces beneath the problems coloured in the correct colours.

He glared "No, it doesn't say that.  I'm not going to do that.  It just says to colour the spaces." 

"Please, write the answers."  I stood and walked over to Hannah and moved a toy for her to chase.

"I'm done, can A and D come over to play now.  "(A and D are neighbourhood friends)

"No, you need to finish your homework."

He started screaming.  The type of screaming a inconsolable three year old does in a tantrum.  I remembered these.  To top it off he was demanding that his friends would be invited over.

I was annoyed.  I yelled back in a stern voice he rarely hears from mommy.  "YOU NEED TO FINISH YOUR HOMEWORK!  YOU NEED TO STOP TALKING TO ME THIS WAY!"

He broke down into tears that I had scared him.  I knelt down next to him.  "Gabriel, this doesn't need to be difficult.  In the time you have been complaining about this you could of wrote all the answers down."

"Your mean mommy!  Your no fun!"

I sighed and sat back on my haunches "Fun, Gabriel, that really isn't my job.  My job is to make sure you grow up with all the skills you need to succeed."

"But mom, it's boring."

I smiled "I know kiddo.  Do you think I find laundry fun?  Do you think I find cleaning done?  No, not really I don't, but it has to get done.  We all have things we have to do that we don't enjoy, the trick is to get them done and move on to what we want to do."

He wasn't buying it and started screaming at me in frustration.  I told him that his friends were not coming over and he needed to go to his room till he gained control of himself.  He argued but went.

I called his friend's mom to let them know that his invitation before he got home would not come to pass. 

When he calmed down I directed him to his homework.  When that was done I directed him to the couch next to me.  "Let's talk."  His behaviour had to have other catalyst then me I was sure of.

He sulked and sat next to me. 

"Do you want a hug?" That usually worked when he was three.

"No."  he said quietly and sternly.

"So, tell me what's going on.  Why are you so annoyed?"

He buried his head in the pillows of the couch.  "This girl at school said "Girls can hit boys but, boys can't hit girls." But that is a lie and not true.  She lied to me right mom."

My brain was going five directions at once.  How do I explain cultural differences to a child that I taught that hitting is never the answer to any problem.  So I bought myself time as I formulated my answer.  "Did she hit you?"

He covered his face with a pillow. 

I pulled the pillow off.  "Gabriel."

"What?"  he wouldn't make eye contact.

"Did she hit you?"

"No, but she lied mom right."  he was furious that someone would lie to him.  He is so my child.

I took a breath.  "It is not ok for anyone to hit anyone else."

"Why would she lie like that?"  he threw up his hands.

Here came the hard part.  "Gabriel, not every family is the same.  When I was a kid it was OK for boys to fight on a regular basis's.  The rule then was that was fine as long as they didn't hit girls. Your friend might be growing up in a house like that.  It's not a lie to her because that is what her parents are telling her."

"I was right, she was lying."

"You are right Gabriel, but she is not lying.  In her family it might be ok.  What you need to tell her is that it is not Ok for anyone to hit anyone else.  Say something like.  Yeah, in the old days that was true but not now in the year 2008 no one hits anyone else."

He smiled and laughed.  "Ok."

"And Gabriel."

"Yes."

"If she hits you tell the teacher."

"Sure Mom."

--Mom

P.S. I did get a hug in the end.

Posted by parents at 09:12 PM | Permalink | Comments (2) | TrackBacks (0)

Since Hannah has gotten her trache out I'm still getting use to the idea that I don't have to be right on top of her when she plays with food. This is a crucial step for learning to eat by mouth. So tonight while I made dinner, I sat her in the middle of the kitchen and gave her a bowl with some lemon yogurt and let her be. It is so nice to not have to worry about her getting food in her trache and subsequently her lungs. I could just let her explore the food and texture.

The following pictures show the hi-jinx that followed.

--Mom

Posted by parents at 10:16 PM | Permalink | Comments (0) | TrackBacks (0)

At one point in Hannah's life, she lived in the children's hospital for three months. She was there from three months old until six months old. She has not forgotten it or any subsequent hospitalizations. So when I hit the left lane in the tunnel that it is the gateway to Portland, she becomes understandably agitated.

So I have learned to warn her. When we have a specialist appointment, I warn her in advance about where we are going and let her know we are not staying. (By the way, if I think there might be an overnight stay, I let her know that, too.)

So Monday morning, I dragged myself out of bed, put on my cheerful Mommy face, and woke up Miss Hannah. It was the day she would of slept in and cuddled.  Why does that mood only hit her when we have things to do? So I told her, "Wake up my gorgeous one! You have doctor appointments today."

She played coy and hid her face and made snoring sounds. I turned on her radio to XM kids and gently slid her light up to medium brightness. I wandered out the room to check my blood sugar, grab a yogurt cup, and check her travel bag.

I came back in; she was on all fours. She saw me, smiled, flattened herself back onto the bed, and hid her face again.

"Wake up Hannah, we have a lot do today." I slid her light to full brightness. I then picked her up out of bed, and she snuggled into my arms. Once her morning ablutions were done, I set her on a blanket on the floor. I got her into fresh clothes while I explained, "Ok Hannah, we are going to a doctor visit and the hospital. A doctor visit:  we are not staying. We are seeing the feeding specialists and then Dr. N" her pulmonologist." So to repeat, we are going to the hospital; we are not staying. We are going to doctor appointments."

She seemed more interested in the TV as I spoke. She was calm as I did her hair - that is a rarity. I think I repeated it several more times. I got on her feet braces. I loaded her in the car. We were giving Robert a ride to work that day. He was outside with her as I did the last minute check that I had everything we would need for a couple of hours.

As I walked into the garage, I heard Robert talking to Hannah. Then, clear as day she said "Go Doctor."

Robert and I looked at each other and praised her emphatically for her clear words. We then confirmed she was right.

As a bonus that night when Hannah's nurse was putting her to bed, Hannah said the word "Doctor" in her stream of nattering she does with that particular person. It came across as I did such and such today and the word Doctor was in there.

I've been telling everyone this story all week. I guess I'm a little excited.

--Mom

Posted by parents at 10:16 PM | Permalink | Comments (2) | TrackBacks (0)

Mommy has not been blogging because she

has been playing Spore during her writing time.

But look how cute thease creatures are.

--Mom

Posted by parents at 11:01 PM | Permalink | Comments (1) | TrackBacks (0)

On Sunday Dec 14 it began to snow:

She liked it!(This Hannah's first time handling snow)

 It has since snowed some more!

Gabriel and His cousin got to sled.  Unfortunately Hannah

had a cold and had to watch inside with mean mommy who wouldn't let her go out.

--Mom

Posted by parents at 09:37 PM | Permalink | Comments (2) | TrackBacks (0)

Last Thursday, Gabriel had an interesting day. 

To begin with,  I had had an ardorous night without a great deal of sleep.  Robert came and gave me time in my bed around four in the morning.  I couldn't rouse myself from the layers of sleep, but I did hear Robert loudly remind Gabriel that he only had three minutes to get to the bus stop.  I later asked what happened and was told that Robert asked Gabriel to put on his shoes.  When Gabriel went to his room to do this, he came out completely naked with shoes on and crying that he had forgotten what he had gone in his room for. 

Nevertheless, when I woke up from father-in-law's ring of the doorbell, the house was quiet.  I had asked my father in-law to come and watch Hannah while I went to a four-year-overdue dental appointment.   I was running late and started getting ready because surprisingly Hannah was still asleep.  

When I was ready to go and had only twenty minutes to get there, the phone rang.  It was Gabriel's school; he needed a new shirt.  Could I bring a clean one by.  Of course, the school was the opposite way.   I grabbed a clean shirt, reviewed some of Hannah care with my father-in-law, then ran out the door.  

I made it to the office and waited patiently as the women finished their conversation, then was directed to the nurses office.  Gabriel looked at me timidly.  "Hi Mom."

"Hey Gabriel"  I lifted the clean shirt to his eye level.  "Let's get you changed."    I pulled his old one off and pulled the new one over him.  I got down to his level and hugged him.   "Mom, this is the nurses office; this is the first time I've been here."  I smiled stood and hugged him again and said "That's impressive since you are a (Our family's last name)" I escorted him back to his room and left quickly.

Later, when Gabriel came home, he was dragging, walking to the front door.  "Did Mrs. H send you the email?"

I felt my eyebrows rise as I opened the door for him.  "An email, huh?  I haven't checked online yet today."  I had a schedule to keep.  We were meeting my father, who normally lives in Florida, at the airport.  We had to get Gabriel's homework for the week finished.  I needed Hannah to go down for a nap and make sure her bag was ready for the two hour, rush hour freeway trip.

"Why don't you tell me what the email is about."

"I got in trouble for giggling."  

This sounded incomplete.  The conversation got pretty vague after this.  But the gist of what I got was he and other kids were putting their hands in the stream of light from the overhead projector.  I was sure I'd get a better picture from the email, but we had his homework and spelling words to go over before we left.  I figured Robert would help me decode the event later.

I eventually got everyone in the car.  We picked up Robert.  He spent the trip interrogating Gabriel once he found out the Gabriel had been sent to the principal's office.  Gabriel was looking at a grounding.   We finally let the subject change.  

Once we got to the airport, Gabriel said, "I can't find my shoes."

I wanted to bang my head on the wheel.  I had told him to get in the car.  I had praised him for getting his seat belt on by himself.  I thought we had gotten past me checking if he had shoes.

He hadn't brought them. 

It's not easy to find shoes for a seven year old in an airport - even with a Nike store there.  We ended up with blue slipper-socks; that's what got us by and beyond this rather awkward day.

--Mom.

Posted by parents at 09:54 PM | Permalink | Comments (4) | TrackBacks (0)

This is Hannah in the Rifton Pacer. Currently we use it as a stander since she never seems to want to take a step in it. We can coax her sometimes. She has her back brace on, and she usually has on feet braces. They cracked three weeks ago, so we are waiting on reordered ones. I prefer to put her in bare feet while we don't have them so I can see what she is doing with her weight. Sometimes I loosely tie a scarf in a figure eight around her ankles to keep her from spreading her legs too far apart.

The reason her head is up is that she is watching Sesame Street. It works as a great timeline for me because it is an hour long show. It is great show for her because she loves it and doesn't complain because I only let her watch it if she is working.

The past two weeks instead of collapsing in my arms when I take her out of it, she has let me walk her to the family room. The way I do this is to stand her in front of me while I hold her below the arms. While I step, I help her move her legs with mine. When she stops bearing weight, I encourage her to rest a moment or guide her to the ground to save my back.

It is a day-to-day battle. But I am seeing progress.

--Mom

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

Two Saturdays ago I opened a letter that I found disappointing. It was from my General Practicianer. The last line said "I fear you have diabetes."

I growled in frustration. I was disappointed in myself. When I was pregnate I had gestational diabetes with both children. As soon as the pregnancies ended I was fine again. I promised myself that I would keep eating right to avoid getting it permanently. I would develop an exercise routine. Well in the past four years it hasn't happened.

Between the exhaustion of keeping Hannah alive, Gabriel well centred, the dishes and the laundry done. I failed to implement these things. I depended on Coke- A Cola to keep me up and chocolate to keep me happy. The universe is slapping me in the face and telling me to get my act together. I'm listening but I still rather have a soda and a nap day to day.

There is a light at the end of the tunnel. If I loose twenty-five pounds it may go away because in my family it is a weight thing.

My diet really hasn't been that bad just the coke a-cola and the lack of cardio exercise is the real problem. So when I get Hannah in the stander I'm not doing chores anymore I'm on the life cycle now doing a work out. I've managed it three times this week so far. 

Nothing like a scary you can die from this, or worse go blind from this to put me on the straight and narrow.

Mom

P.s. I want a candybar and a Soda.

Posted by parents at 08:50 PM | Permalink | Comments (4) | TrackBacks (0)

The other night was one of those rare times when the house was quiet. Both children had gone to sleep by nine o'clock. No emergencies or buzzers sounded as I waited for ten pm when I give Hannah a medication and start her night feed. I did this and quickly made my way through my bed routine. I laid down and worked on relaxing for sleep. This usually takes me a half hour. Everything remained quiet.

I started to fall into rem sleep. Suddenly, I heard "Beep, beep, Beep, Beep!" It was Hannah's pulse oximeter which monitors her oxygen levels and heart rate.

I jumped out of bed and ran to Hannah's room. The monitor had stopped beeping, and the numbers were all in great ranges. They were not even close to dipping or surging levels. I checked Hannah's feeding pump and her foot probe setting; then I went back to bed.

I started to fall into rem sleep again. Suddenly, I heard "Beep, beep, Beep, Beep!"

I jumped out of bed and ran to Hannah's room. The monitor had stopped beeping, and the numbers were all in great ranges. They are not even close to dipping or surging levels. I checked Hannah's feeding pump and her foot probe setting. I unseated the probe cable and reattached it. I changed the tape on the foot probe.

Then I went back to bed. This cycle repeated 5 more times. I gave up, grabbed a pillow, and slept on Hannah's floor next to the pulse oximeter. I decided the machine was lonely and needed my constant presence.

--Mom

Posted by parents at 09:32 PM | Permalink | Comments (1) | TrackBacks (0)

"....

"Remember, Thursday, that scientific thought, indeed, any mode of thought whether it be religious or philosophical or anything else, is just like the fashions that we wear-only much longer-lived. It's a little like a boy band."

"Scientific thought a boy band? How do you figure that?"

"Well, every now and then a boy band comes along. We like it, buy the records, posters, parade them on TV, idolise them right up until-"

"-the next boy band?" I suggested.

"Precisely, Aristotle was a boy band. A very good one, but only number six or seven. He was the best boy band until Isaac Newton, but even Newton was transplanted by an even newer boy band. Same haircuts-but different moves."

"Einstein, right?"

"Right. Do you see what I'm saying?"

"That the way we think is nothing more than a passing fad?"

..."

(Lost in a Good Book by Jasper Fforde page 61 *note: the main character relating the conversation is named Thursday)

I think this explains why I find everything relative to personnel experience. I have taken the concept of relativity to a subjective level. A big bag isn't too cumbersome in comparison to carrying a bunch of added medical equipment with a bag. Taking care of a g-tube is a walk in the park in comparison to taking care of a trach tube. I find being able to walk miraculous since, I'm trying to teach my four year old how to walk.

--Mom

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

When Hannah and I go out I bring a backpack. But it is not the size you are thinking. It isn't one designed for books and papers it is designed for travelling or backpacking.

I tried for a long time using a standard size backpack but, found I needed to bring extras bags to carry.

I was going to design my own when my wonderful father in law found the one I'm currently using. He bought it at a triple A automotive club store. It's label featured a television travel show correspondent as it's user slash designer. It is cool in that it has a soft shell and multiple ways of holding it.

Anyways, when I go out, people look at my bag and say "Wow, that's a lot to carry!"

I smile and laugh. "To me it is a lot less to carry. I use to have to bring a diaper bag, oxygen tank, pulse oximeter, suction machine, ambu bag and ventilator besides Hannah."

It is true, I love only having to bring one bag. These days when it is just a visit to the store I can even leave the bag in the car. All I need is a washcloth.

I am so happy that Hannah and the family can have more adventures since it requires less stamina per excursion.

--Mom

Posted by parents at 07:50 AM | Permalink | Comments (4) | TrackBacks (0)

This is the second weekend that we were doubled booked. Gabriel and Hannah had parties and  events last weekend and this weekend. It is a new experience for us. They, of course, overlapped last weekend.

So we split up. I was mean when Robert asked which event I wanted to go to. I choose Gabriel's. I told him it would be easier and it was. I got to hang out with other moms and make small talk. That is a rarity in my life, so I relished it.

Poor Robert had to deal with many stairs. There was also an exuberant Golden Retriever who showered Robert with attention. Once Robert got Hannah and the wheelchair upstairs, he had to deal with easily bored Hannah. She being a four year old wanted to move. Unfortunately, most of the rooms were not on the same level so one had to go up and down between them. Not wheelchair friendly at all. Robert gave up and carried miss-pushing-40-pounds for a half hour.

Needless, to say he was exhausted when he and Hannah came to pick Gabriel and me up.

--Mom

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

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

Hannah has been growing. Lately, when she has thrown a fit in her crib, I would watch the whole thing shake. I realised it was time to get a new bed. So over the past few weeks, I have been checking out twin beds. I looked into the medical beds. Way too expensive. I realised that with her medical needs changing, a high tech bed was not necessary. What we needed was a bed with a higher edge on all sides so she couldn't fall out. Her Grandfather, Uncle, and I were looking at high edged day beds because they would have at least 3 sturdy sides. I would just have to buy a bed rail.

Well the other day on a whim I stopped at a local furniture store in Cornelius. It is called Murphy's Furniture. (By the way, the staff was very helpful and low pressure.) They had a great sturdy day bed with two rails in its back. As I was talking to one of the proprietors, I found they were willing to make me two rails for the front too. It is a bed they designed there, and the parts were readily available.

It came with a mattress and the price was affordable. They had it ready within a week.

Tonight is her first night in the bed, so wish us luck in her going to sleep.

-Mom

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

The past couple of months have been real turning points for us. When Hannah is awake she can keep her oxygen levels at a great level plus she is so active there is no way to put a monitor on her. That is a good sign an active child is a breathing child.

With that said I been having the pleasure of being able to do certain other tasks while taking care of Hannah that I haven't been able to do before. I can take out the trash without another adult in the house. That was too far to go before. I can go take a 2 minute shower. I can go to the bathroom alone.

I feel so lucky!

--Mom

Posted by parents at 06:54 PM | Permalink | Comments (1) | TrackBacks (0)

Posted by parents at 08:32 PM | Permalink | Comments (2) | TrackBacks (0)

Whew, I made it! This was my first weekend by myself with the kids and no nursing support. Robert is on a business trip in another country in a different time zone for a week.

It is great that we have instituted a bedtime routine in the house so I can have my little angels in their bed by a certain time. That's when I get to go crazy and have fun. My latest bought of fun is playing Chocolatier  2 Secret Ingredients and listening to a book on tape in between Gabriel's interruptions and Hannah's alarms.

I know I'm a mad woman!

--Mom

Posted by parents at 07:21 PM | Permalink | Comments (1) | TrackBacks (0)

Hi my name is Janette, and I am about to be 37, and I really, really, really ardently love simulation games.

Let's see:  it all started when my step brother showed me Sim Ant. In Sim Ant, you play a colony of ants trying to drive the humans out of the house. Then I moved on to Sim Life where I created a whale butterfly I couldn't keep alive. Then came Theme Park where I got to run an amusement park: a secret dream of my childhood. Next, there was Afterlife where I got to design Heaven and Hell. Then, Roller Coaster Tycoon hit the market. Oh my goodness. I got to design a park and roller coasters. These roller coaster could be designed in three dimensions going underground zigzag through mountains. I played this game exclusively for six years.

I went cold turkey when my son was born for about 3 years. Of course, when I finally got a moment alone a year after Hannah was born and I had help with nursing, I booted up Roller Coaster Tycoon, and it had been waiting like an old friend:  a world I could control and modify. I then proceeded to Zoo Tycoon. I had the patience now to deal with the animals and their various demands.

Then it was Sim City, I know I was late to this one. I was gatewayed in by a used cartridge for the Nintendo DS. Civic planning:  that is actually a hard one to feel in control of. But it is a great challenge.  I try to make everything public transportation oriented, low on pollution, with good hospitals and good funding for schools. It's really hard and I still have not succeeded completely with a positive cash flow.

So when I bought my new computer, I saw a box labelled Spore. It was only ten dollars and it was a module to a game to come. I thought 'What the heck'. It was cute. The actual game has hit the market and, as a surprise, Robert bought it for me. Oh my goodness. I'm so hooked it is not even funny. So the premise is you start out as a single cell organism and work towards mutation and evolution to a become a sentient life form to create societies and I believe colonize other planets.

So my first creature is in the hunting-gathering stage.

--Mom

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

Ok, we have been using the cloth diapers for several months now. It is great. We have less trash, which is a plus, and we don't have to keep dishing out $12.99 per 22 diapers. The only drama that remains is the laundry.

It takes more then one wash through to get them clean. I ended up doing some research online and commercial services actually wash diapers around 10 times to get them clean. It took some trial and error but I figured it out for our house, but it does take up a great deal of washer time.

(Remember Hannah can't use a great deal of soaps and no chlorine bleach)

Here it goes:

Step 1: Diaper Pail contains a mixture of Borax, white vinegar and water

Step 2: In Washer Rinse in cold water and white vinegar with a second rinse

Step 3: In Washer set washer to hot and use Borax with a second rinse

Step 4: Finally wash the diapers. In washer set washer for Hot and use Free and Clear All and 7th generation non-chlorine bleach. Set a second rinse

Step 5: In washer set for hot and use no soap and a use a second rinse (Idea here to get all soap out)

Step 6: Put in dryer and dry

Step 7: Put in washer and wash with free and clear all and second rinse

Step 8: Put in dryer and dry

Step 9: Fold and put away

If diapers are put away after step 6 if they just get wet from a drop of water they will reek and the smell will stick to everything.

Luckily I have a water efficient washer and the soaps I am using are not hard on the environment.

Oh and between washings, wash out diaper pail with Soft scrub, rinse, hand dry then let air dry.

Gosh! I never knew I would ever have think so much about laundry!

--Mom

Posted by parents at 10:02 PM | Permalink | Comments (2) | TrackBacks (0)

I'm married to the greatest man in the world. This last Sunday, I went on vacation. All by myself. It was wonderful. I knew the kids were in great hands with Robert and that we would have nurses those nights so Robert could get some sleep. So I was free to relax and focus on what I wanted to do for a change. I went stayed at one of the Hiltons in downtown Portland off sixth street for two nights. It is in the middle of everything downtown; I could walk to everywhere I wanted to go.

So around four in the afternoon on Sunday, the kids and Robert dropped me off. The staff was wonderful and took my untraditional luggage of a humungous toolbox, giant portfolio, one backpack and one duffel bag in stride. The toolbox was filled with art supplies. The portfolio contained blank paper, in-progress work and finished work for reference. The backpack had the DVD's, Laptop, Nintendo, mps player, novel I'm reading, novel I'm working on and gum. The small duffel had my clothes and toothbrush.

The room was in the corner with two sets of windows looking out at Taylor and Broadway. The furnishings and wallpaper were sumptuous. The bed was a single king decked out in like five pillows. I have rarely stayed in Hotel rooms this nice.

My plan was to work uninterrupted for the two days on finishing a picture book about Hannah. I was going to watch movies and work. I had planned some spa treatments for the afternoon on Monday. I got a good deal done even though I was lured into watching the pay per view movies on the Hotel TV. I enjoyed some great meals and the spa treatments were wonderful. I made it to the Art museum and a little clothes shopping.

I feel rested and relaxed and ready to take up my responsibilities again. And the really nice thing is I feel I didn't break the bank doing it.

--Mom

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We are a family with sensitive skin. Robert and I must change shampoo brands out regularly or get red ichey bumps in our scalps. I never use dryer sheets or we all break out in itchy red bumps. Well Miss Hannah has taken this sensitivity to a new level.

Hannah breaks out from almost all soaps and most synthetic fabric. But her main source of skin irritation is in latex. This substance is more common then most realise. It is in elastic. Her grandfather makes her slacks. He buys a latex free elastic to make them with. The clothes in the marketplace never let you know if there is elastic hidden anywhere on them. I usually can get away with buying her shirts. As long as it is 100 percent cotton. Well, last week I bought some cute shirts with hidden elastic in them. One had loops where the buttons feed in that were elastic and the sleeves had tapered ends with elastic. I fixed the problems with a pair of scissors and the ragged edges don't look too bad. I'll hem them eventually.

To top it off, we think the fabric on Hannah's wheelchair is causing her to react.

Her grandfather is working on slip covers for it.

If I ever get the time. I think I might want to start a campaign about clothing/fabric labelling. We can't be the only ones reacting to this stuff.

--Mom 

Posted by parents at 10:04 PM | Permalink | Comments (2) | TrackBacks (0)

 As I was driving with the kids to pick up my computer from the Geek Squad (Long Story Don't Ask) I hear this cheerful little voice say "Momma". It was Hannah. I'm still new to her clearer voice. I glance in the review mirror and say.

"What Hannah?"

"Woooooshh Woooshh Wooosh!" She says. It sounds like a cappuccino machine whipping up froth milk.

I giggled. "Ok, Hannah. Woooooshh Woooshh Wooosh!" She has been experienmenting with sounds since the recent operation and this is one of her new favourite. I know it doesn't mean get coffee because that is not her thing. I think I figured it out though, it makes Robert, Gabriel and I laugh. She is trying to get us to laugh and of course we repeat it back which amuses her.

She must of thought the moment needed a release or at least her brother needed a break from the barrage of questions I gave him about his first day of First grade.

--Mom

Posted by parents at 08:54 PM | Permalink | Comments (5) | TrackBacks (0)

We had a funny experience at our house the other night. Robert was being a sweetheart and cooking diner. He suggested we listen to the last NPR recording of "Wait Wait Don't Tell Me." It is a comedic game show based on current events. Robert and I both at some point laugh at it when we are listening to it. So we set his MP3 player to play through our under-the-cabinet CD player using a FM modulator.

Meanwhile, Gabriel was in the family room playing a Wii game on our TV, and Hannah was watching our portable DVD player on the floor (They Might Be Giants new DVD). Our kitchen and family room are one big room, so it was a little noisy. I took a dining room chair close to the kitchen counter radio to hear the NPR show while I played my Nintendo DS.

When it was time for dinner, we all paused and went to the table except for Hannah; she had fallen asleep. We had dinner; then cleaned up. Gabriel returned to his game, and I returned to my place by the radio. Robert moved a chair over across from me and started playing his Nintendo DS. At some point, Gabriel saw what we doing. He pulled a chair over by Robert and I, and he brought out his Nintendo DS and started playing it.

Ah, there is nothing like the nostalgia feeling of a family gathered around a radio: with little modern tweaks, of course. Gabriel keeps asking when are we going to do it again!

--Mom

Posted by parents at 09:12 PM | Permalink | Comments (1) | TrackBacks (1)

Gabriel has been an amazing big brother of late.

When he builds a fort he wants Hannah to come in and share it with him.

One of his latest ideas is to turn the family room floor into a jumble of all the pillows in the house. He takes the one pillow from his bed. Then he grabs Robert's and my pillows from our room. Next comes the six pillows from Hannah's room. That is followed by the three pillow wedges from various rooms. He tops it off with all the pillows from the couch. Then he proceeds to dive under and recline on them. Then he insists Hannah be put in the middle of it. She rolls around and over them which I believe is good for her spatial awareness. He has essentially made a rolling child's obstacle course. Once he is bored with the rolling and lounging, he starts hiding their toys in various areas beneath the pillows to hunt for them. Hannah just tries to get his action figures and tries to see how long she can chew them before she is caught.

He has started having conversation with her. He does both parts. He gets annoyed when I'm too close, but it is great to watch Hannah's face while these quote conversations are going on. She rolls her eyes sometimes, will clap her hands with excitement or just laugh at him. He loves to make Hannah laugh. She likes to do the same to him.

I must say that this makes me happy. I never expected my children to like each other. I'm an only child and just watched most siblings argue. I know this a honeymoon period. When she starts walking and destroying his stuff, things are going to get real heated. For now, I'm relishing the time of bliss between the siblings.

--Mom

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Monday was Hannah's second trache hole closer surgery. She was amazing. She didn't complain as we headed to the hospital. She was calm waiting to check in. In the day surgery room we share with other weeping and disoriented kids, she played the princess. She wanted singing. She knew we had  her portable DVD, and she wanted to watch her Hannah Montana concert DVD not whatever was on PBS. Robert and I, her courtiers, complied.

She was given the relaxation medication before heading down to surgery. Her balance became precarious and she fought laying down. By the time we reached the pre- operation room, her eyes were glassy as she was checking out her hands. The surgeon laughed. "You were given something Hannah, I don't think I've ever seen you that still."

The surgery was quicker then expected. That was new for us, and after thirty minutes, I was called to the recovery room. I was informed that she breathed for herself throughout the surgery. I was so proud. She was waking and her voice was clearer with the trache hole closed. She woke agitated. They put her in my lap to calm her down. Between my singing, her Mp3 player, and the pain medication she was happy.

The nurses enjoyed her player and asked me to turn it up. Within twenty minutes Hannah, was sitting upright in her bed wiggly her head. This is how she dances. Every now and then she said "Go Out."

I think it is one of our fastest surgery trips.

--Mom

P.S. The doctor mentioned it took a bit to get the IV in.

Posted by parents at 11:36 PM | Permalink | Comments (2) | TrackBacks (0)

Up here in the Northwest it has been that time of year where the smell of cotton candy and funnel cakes fill the air. Carnival season is here. In the past couple weeks we have taken the kids to the local carnival and the one just over the border in Washington. I think we are revelling in our new family freedom.

Gabriel has been hopped up on sweets. He loves carnival food. Give him blue cotton candy and an elephant ear and he's a happy boy. (No I don't let him have both on the same day) Hannah's been rocking to the live music. She loves the people watching till she hits a wall and get's way too mentally stimulated and demands to go home or at least to the bathroom to get away from it all.

Something I'm proud about is I got her on a carousel. Gabriel cheered and babbled non-stop to her while she closed her eyes and took in the breeze on her face. She didn't laugh she didn't cry she just absorbed and processed later. I got a hug and kiss when it was done though.

--Mom

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Last week, I took Hannah to a post op appointment with her ENT(Ear,Nose,Throat) surgeon. I knew we would have some surgery news, but the news he suggested was unexpected. She still has a millimetre size hole in her neck. Hannah won't let it close. I was expecting that the doctor was going to decide to put another stitch in. Nope: it went like this.

The doctor examined her stoma (the hole in her neck). He sighed, straightened in the chair, and backed up toward the sink, resting his right arm on the counter. He looked at the ceiling then stared at her.

Gabriel was demonstrating to the doctor how he could make Hannah laugh. Hannah was laughing at him.

The doctor said "Hannah," [dramatic pause], "what are we going to do with you?"

I laughed. "She always does this to you guys." I'm sure I could see the gears in his head spinning like a person grasping for the solution to a puzzle.

He came to a decision in his head and said, "I'm going to have to go in, cut the whole thing out, and sew it straight."

I interpreted is this as: he is going to cut all the scar tissue out, making a slit in her neck, and then suture those edges together. It is a good idea. Surprising, but a good idea nevertheless. I had a staring off look because I'm a visual thinker. "Ok" I said then my practical side commented "Is that an out patient procedure or will she need to stay in the hospital?"

I'm not sure which he was responding too but he explained further. "Just a stitch won't work because it is healed all the way back."

I visualised this again. The stoma has surface skin all the way around and through to the trachea.

He continued as I adjusted Hannah who was slipping off the examining chair. "It will be a day surgery? Do you have any vacation plans?"

So Hannah is going to have surgery again and all I think about is where are they going to put the IV. Since Hannah has had several surgeries when she was small and she has my fast clotting blood, it is very hard to get an IV in her that works.

It has to be done but it still sucks she has to go through that again.

--Mom

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A while ago Gabriel asked me to draw him a picture. He wanted the picture to include: Robert drawn as Luigi helping Gabriel drawn like Mario from the video games Mario Bros. So one day I was avoiding doing work and started to draw the image poster size. (The reason for this size was to replace a picture of a pirate on his wall that scared him half the time.)

I liked how it was looking and checked in with my boss Gabriel to see how he liked it. He smiled "That's great, Mom, but where are Hannah and you?"

So the scene grew to include Hannah as princess Peach and me as Toadette.

It is sweet that he wanted to include all of us in his imagination play.

While I was working on it and left it sitting around Robert and I would find him crouched down next to it telling stories about all of us in Mario Land.

--Mom

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

We started slow

The water felt great!  No red bumps from the chlorine!

We went in deeper!

Gee, This is fun!

 This summer seems to be a wealth of new experiences

--Mom

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As I have mentioned several times before I am a book-a-holic. There is no twelve step program needed, my children and husband come first. House cleaning rarely does. I find having a good book in progress keeps me grounded. My mind gets to have a vacation if my body doesn’t always get to.

My favourite genre is Fantasy. Anything with some wizards, dragons and a few fairies can hook me in seconds flat. Lately, the books that have been captivating my attention are not found in the regular Sci-Fi/Fantasy section. The books I've been excited about in the past few weeks are found in the young readers or young adult section. They are fantasy, there has been an expansion of good fantasy writing categorised in these "childrens''" sections.

Some of my friends, who get caught up in labels, need a little push to expand their minds and get past the labels retail establishments put on books to shelve them. When I say something is a great read. I'm not kidding. If you love the genre like I do, the fact that a book is in the children's section of a bookstore should not get in anyone way of reading it.

With that said I would like to put forward for your consideration the book called The Warrior Heir by Cinda Williams Chima. I had picked up the book several times at the book store and read the cover and set it back down. War books are not my thing. So I would set it back down. Then I would pick up the Wizard Heir book and realise it is the second book and set it back down. I had done this several times over the year. This month I decided to buy the first book.

It is not about war in the traditional sense. It is about a boy thrust into a world of mystery and court type intrigue. I was hooked with in the first paragraph. I was pushed through the book with captivating questions almost answered. I liked that main character had family who loved him to deal with along with everything else. I immediately bought the next book when I was done and devoured it too.

--Mom

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Gabriel had a two week acting class that ended last Friday with a funny production of Snow White. The kids had helped develop the dialog and the instructor warned us all that he had no idea what any of them would do on stage.

Needless to say it was hilarious. I will do more recaps later but tonight I got to witness a rare treat.

Part of the class involved singing the song Hello Dolly from the play of the same name. Instead of singing Hello Dolly the class would substitute the name of the classmate. Well tonight Gabriel started singing it to Hannah. She lapped it up with loud chortles and cheers. She did long extended giggles. He finished with the dancing number. He went to do a second round. But, Mommy gently reminded him that she was trying to wind Hannah down for bed not up.

"But, she loves it Mom!" he exclaimed exuberantly.

He is right of course and it is always wonderful when siblings get along.

--Mom

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

In the past couple weeks Gabriel has performed in a play as the result of an acting class. Hannah has gotten more stable standing where I can hold her with her arms straight up rather than at her hips with no worries of dislocation and easier on my back. Both kids have gone to neighbour's house to play in the kiddie pool. I took Hannah into a swimming pool for the first time. Gabriel has discovered a dozen new ways to get Hannah to laugh.

I haven't shared any of it. I've wrote the blogs in my head but haven't typed them out. I have been diverted at night. I have been playing video games. I know it is a shock. After a day of being Mommy, I like to sit down with a moving puzzle and zone out for a while.

My latest diversion is The ancient quest of Saqqarah.

I've have freed all the gods so my blogging should pick back up.

--Mom

Posted by parents at 09:29 PM | Permalink | Comments (0) | TrackBacks (0)

Today when I went to pick up Hannah from school she wouldn't look at me. She was seated on her blanket on top of bark dust chips in the playground. I would try to catch her eye and she would deliberately turn away.

Until I put my hand down and scooped up the wood chips and dropped them down. She shook her head at me and tried to bite me.

The onlooking nurse said "She has been great at not picking up the bark dust, today."

So my four year old was giving me a lesson in playground rules. I tried a couple more times and each time she admonished me.

It made the nurse and the onlooking PT(Physical Therapist) laugh.

--Mom

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Mom announces it is time to get ready for bed. Hug your sister and stare at mom incredulous and say, "But Hannah is just about to get married."

Ok, you got your mom hooked now. Especially, if you are a boy, she is not expecting this and doesn't want to give gender specific messages on play. She will comply more so with this tactic. Note if you are a girl try announcing you need to reconfigure the computer.

Mom intrigued will say something like, "Wow, Hannah is getting married. Who is she marrying?"

Smile and look at the toys surrounding her quick. Focus on the one she is currently getting the most entertainment from. "Ah her, rabbit Mp3 player."

Mom will shake her head in agreement, "Good choice. Hannah does love music. Let's do the wedding after everyone is ready for bed."

What a curve. I can't let mom get the upper hand. Oh I know further distraction,. "I'm going to get married, too."

"Wow, this is a big day. Who are you marrying?"

"Um, my girlfriend."

"Who is your girlfriend?"

Ok, Mom is really into the details. I don't have an answer for this. It is time for another distraction, "Hannah is going to have a baby."

"What?"

"She is going to have a little boy. So we need to give her toys at the wedding for her baby."

"Well we better get ready quick."

--Gabriel tactics related through Mom's perspective.

Posted by parents at 08:12 PM | Permalink | Comments (2) | TrackBacks (0)

Three weeks ago, Hannah had a post operation appointment with her ENT (Ear, Nose and Throat Doctor). He was the person who had made her trach hole originally, and he was the one who stitched it up. Things were going well. Unfortunately, Hannah has been attempting to breath through the hole in her neck still. So it hasn't closed completely.

The doctor examined it and said, "It looks great, but there is the smallest of holes." He went to the counter and pulled out a long stick.

"What's that?" I asked

"Silver nitrate," he said matter of factly

Internally, I was scratching my head. At home, those sticks were used to burn off
granulomas. Granulomas are these bloody bumps created by big holes in a person's body. They are essentially tissue the body is trying to heal itself that the tubes interfere with.

"What are we doing?" I asked quickly as I got a more protective grip on Hannah. That last time I let one of those things be used on her she screamed like it was extremely painful. I hadn't anticipated or told Hannah there would be pain that day. I like to warn her.

He looked at me casually. "Oh, I'm going to rough up the edges in there so maybe we can heal the hole without having to stitch it up."

That made sense. I looked at Hannah, "This might hurt" I gripped her tighter in the chair that had no way of supporting her.

He stuck the stick in, and the hole blackened. She didn't scream or even squirm.

"Ok, I want to see her in six weeks." said the doctor.

I looked at my father in-law and children. Everyone was in a good mood The appointment had been maybe five minutes. The day was beautiful, and we had drove all the way to Portland for it.

So I said, "Let's go to the zoo!"

Gabriel cheered.

Zadie was helping me out because I'm not ready to leave Hannah alone in the backseat of the car for over ten minutes. She needs a medically trained adult next to her. So I can't drive and take care of her at the same time.

When we got to the zoo, Zadie unloaded Hannah and mentioned something about tarnishing. I got us our tickets, and we went inside. For some reason, people were giving us a wide berth: wider than normal. I went to wipe Hannah's face of drool and noticed why: she was bubbling black stuff out of her trach and spreading it with her saliva.

She was in a great mood and felt fine. It just was a little alarming of a sight.

That night, Robert said, "Hannah has a black hole in her neck." We proceeded to wonder what the properties of a neck black hole would be. Yes, we are nerds: through and through.

--Mom

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Sometimes I think I'm getting myself together and the universe slaps my arrogant thoughts away.

Robert and I are now having less help with Hannah at night because she is doing really well. This means more all night-ors all week long. Hannah still has not figured out sleeping with out medical support at night yet.

I started the kids getting ready for bed early tonight. My hope was to get a few moments to myself. Well the little darlings thought otherwise.

The neat thing was Hannah babbled Mommy sweetly to me. She asked to go to the potty. She tried to get me to have a conversation with her. In the breaks in between Gabriel was doing all the same things. It's genetic or I'm a real soft touch. Most likely a little of both.

I finally used the stern mommy voice on both of them and said go to bed.

Hannah of course grabbed my arm and smothered it in kisses.

--Mom

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Gabriel was invited to a birthday party out of our normal area. Where we live doesn't have a synagogue, so we go to one about 45 minutes away, and that is where Gabriel went to Sunday school. He had a really good friend there whose mother and I exchanged phone numbers. We never got around to getting together. Then she called and invited us to her son's birthday party.

The day was balmy and golden. Northwestern sunny days are rare, but when they do happen, they seem perfect. The air was warm with a cool breeze, and the trees made a shush sound in the air. The party was at a park. In the middle of this park was a huge grassy hill. The park attendants had stretched a plastic tarp down the hill and ran a hose over it. When the mother had mentioned slip-n-slide, I was thinking it would be the normal flat sprinkler sheet of yellow plastic perpendicular across a yard. This was something more.

I had brought a blanket for Hannah and me to sit on. So I settled us down and started her noon feed as I watched Gabriel run off with his friend and go stand in line for the humongous slip-n-slide. Hannah watched and clapped with enthusiasm. It took me about twenty minutes, but I realised something: people who stayed sitting up on the slide didn't get their faces and, importantly, their necks wet.

Hannah's neck still has a small hole in it, so water entry through there could still be dangerous. I realised Hannah, though, could do this without risk is she remained sitting. Unfortunately, I only brought back up clothes for the kids, not me. Then I considered Gabriel. He is six. He's pretty strong. His understanding of the importance of safety with Hannah has blossomed.

So when he wandered over I asked him, "Would you take Hannah down the slide?"

His eyes lit up. I think he craves big brother things to do with her. "Oh, yes, please can I?"

"Let's see." I looked at Hannah. "Hannah do you want to go down the wet slide." She smiled and clapped. I think there was a "Yeah!" thrown in there, too.

So I unhooked her g-tube. I grabbed a towel and a wash cloth and walked over to the line. I explained to Gabriel that he needed to keep her sitting up and hold onto her. I sat her between his legs and let go. I walked down the side as they made their progress. Hannah giggled and Gabriel laughed, "She likes it!"

They made it down in one piece, and Gabriel asked if they could do it again. So I asked Hannah and she screamed "Yeah!"

So up the hill we trudged again. They loved it; Hannah signed for more. But I was out of breath. She is around 36 pounds, and it was a big hill. The line on the top was pretty long too, so I copt out. Hannah was furious.

She did, however, also get to ride a merry-go-round and the swings.

It so sucks that I forgot our camera.

--Mom

PS. Gabriel wants to let the world know he threw up off the merry-go-round. A girl came and spun the merry-go-round really fast. He told her he was getting sick, and she didn't believe him and spun him faster. Hopefully, next time she will believe whoever tells her they are sick.

Posted by parents at 09:46 PM | Permalink | Comments (6) | TrackBacks (0)

Last week, I finally got around to hanging the Mezuzahs around the house. We've only been living here 6 years, and we bought the Mezuzahs 4 years ago. So last week, the day before we were interviewed by a reporter for a Jewish Newspaper, Robert and I decided it was time to hang them.

The Hebrew word Mezuzah means "doorpost". In our tradition, it is placed on the doorframes except the bathrooms. It is a casing that contains a scroll with the words from Deuteronomy 6:4-9 and Deuteronomy 11:13-21. They contain the  words of the main prayer of Judaism. It is called the Shema. We do this because of the biblical commandment to write the words of the Shema upon the doorposts of our houses.

It is a symbol that we are a Jewish home.

Robert showed Gabriel the general practice of people to touch the Mezuzah with their hand then bring their hands to their face and kiss them out of respect for the words of God. They do it every time they enter a Jewish home. It is a cool practice. Gabriel has taken it up. He has also started yelling at me because I don't do it.

I'm using it as an opportunity to teach him religious tolerance and Judaism. Wish me luck. I'm trying to split hairs on what is a practice and what is required by God. I'm also trying to teach him that respect and deeds are the most important thing:  not whether or not a person just does what everyone else is doing.

--Mom

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

As has been previously mentioned on this blog, Gabriel was really sick all last week. There was a moment in the turmoil that actual made me laugh out loud.

I was arguing with Gabriel for the zillionth time, trying to get him to swallow anti-fever med. His nose was dripping snot (which was traumatising him). He stared at me dead pan. "There is an answer for all this misery. It is chocolate."

I nodded my head in agreement and got him a chocolate donut.

--Mom

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Hannah has really sensitive skin. Carpet makes her break out. Tissue makes big red splotches on her skin. I'm not kidding. We don't use wipes. I have about hundred wash cloths we wash over and over till the holes are bigger then the cloths. For awhile, she had a diaper rash problem we could not figure out. We did figure out that nystatin made it worse.

One day I had one of those deductive reasoning moments and realized that paper that has been bleached at any point in its existence was a problem (she broke out from white paper), so I moved Hannah to Seventh Generation Diapers. The diaper rash and redness disappeared.

It has been wonderful. Hannah has been growing and, well, the biggest size no longer fits her. I tried looking for older peoples incontinent pads that were not chlorine bleached, but could not find any information. So I started looking at cloth diapers. I already do a great deal of wash for her wash cloths, and she prefers to use the toilet when stooling.

There was an added problem with my odd aversions to certain fabrics. When I touch something that is velvet or similar in texture, I get that feeling that one gets when nails scratch a chalk board. It seems totally irrational and involuntary. but I've had it all my life according to my mother. That has been the problem with most diapers I've bought; I can't seem to hold onto them because they usually use flannel. (Ewww I just winced and shuddered)

So Hannah's grandfather, the great Zadie, has developed a diaper that is easy to use. It is smooth on one side and I don't have to touch the absorbent side.

Yay!, Zadie

--Mom

Posted by parents at 10:26 AM | Permalink | Comments (1) | TrackBacks (0)

We quietly had a big event in our house last Wednesday.

I think I made the supply person laugh all the way home with all the pictures I took

--Mom

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Gabriel's teacher arranged for a graduation ceremony for Kindergarten last week. The kids performed songs and did a play about Geography. I brought Hannah to see it. It is the first time something in the class has been scheduled and Hannah wasn't sick. She loved it and clapped emphatically at the ends of songs. She also chortled loudly at unappropiate moments. It was great.

The rest of the adults laughed as Gabriel's best friends interrogated me on the fact that they could still see the hole in her neck even though it was suppose to be closed. I love little kids. They just ask you straight out what is going on in their mind.

--Mom

Posted by parents at 10:54 PM | Permalink | Comments (0) | TrackBacks (0)

One of my distractions over the last few weeks has been the book InkHeart by Cornelia Funke. Robert and I got MP3 players that are compatible with Audible.com. It is a site for downloading books read outloud.

When the main characters in this story read out loud, things from the book they are reading come out. If the character is reading the poem Ode to the Nightingale   by Wordsworth, by the end of reading, there is a nightingale flying around the room.

So I listened to the beautifully descriptive book read out loud into my mind. This is funny listening to a book about things coming to life when read out loud, while listening to it read out loud.

The characters were fun and scary. Dialogue in this book felt real. The scenery it conjured in my mind was rich and consuming. The reverent love of books for books sake theme was also comforting. The overall message of the import ants of family heartening.

It is nice to have an adventure story for a child that also involves a parent with them.

I can't wait till I can share this story with Gabriel and Hannah.

I am in anxious anticipation of what Hollywood has done this to this story.

--Mom

Posted by parents at 09:20 PM | Permalink | Comments (1) | TrackBacks (0)

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Today, Robert, the kids, and I decided to go on an outing. Robert needed to do an exchange at our new Best Buy store. Just getting out sounded fun to me.

So we went to do our errand; then go to Red Robin for lunch. Red Robin was busy today due to the holiday. Seven teenage girls, obviously together, were taking up two booths worth in the waiting room. Their hair was all perfect. Their clothes matched their cell phones. Their cell phones weren't stashed away in a purse or pocket; they were clutched like Gollum's Precious from the Hobbit.

Gabriel paced the lobby. He tried to climb the five-foot replica of the Statue of Liberty. He was sure the plaque she held was a book that could be opened: an idea he got from Schoolhouse Rock. He asked me if I could open it.

Meanwhile, Hannah was protesting. She was hungry. So Robert whipped out Hannah's feeding tube and syringe. I watched the teenagers' eyes widen, and several shielded their eyes. This amused me. I bent down and said to Robert, "You won't believe the responses those girls are giving right now."

He chuckled. He joked we should ask them if they had a BIC pen to reinsert a trach for Hannah. He soon came up with other crisises, a little more typical to our life, but that would probably shock them just the same.

Personally, I would love to think that Hannah, as she gets older, will go up to a person like that  and say, "Oh, you still eat with your mouth? How barbaric!"

--Mom

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I took Hannah's post-hospital stay prescription to our local pharmacy. Before I left it with the pharmacist, I had them make sure they carried the medication and that they had the item in stock. That all checked out, so I asked for the prescription to be ready at noon the following day. (Before I went, Robert had checked on our insurance coverage.)

The next day I went to pick it up at 1:00 pm. The gentleman who was new to this pharmacy looked at me and said, "You can't refill this till June 22."

I gave him a puzzled look. Gabriel started pacing. "What do you mean?" I asked.

"You insurance won't refill this till next month."

"What do you mean refill.  I just dropped this prescription off yesterday?"

He shrugged.

"This is not a refill. My daughter just got out of the hospital yesterday. I just dropped off the prescription.  It hasn't been filled anywhere else."

After a lot of hemming and haww-ing, I got them to agree to call the insurance company, and since I had other errands to do, I said I would contact them again at 3:00 PM.

At 3:00, nothing had changed. This is the medicine to help with her stomach recovery by the way. So I went home and started calling the insurance company. Four phone calls later, I find out it has been approved, but the pharmacy just kept putting the request through which confused the insurance computer with it's multiple requests.

There went another couple hours of my life I'll never get back.

-Mom

--Mom

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

The other night, Gabriel came into our room complaining of a bad dream. It was my first night back from the hospital, so I wasn't going to share my bed with a kicking six year old.

"Let's go cuddle on the couch." I said softly.

He looked at me and said, "OK"

So we went to the couch in the family room and settled down. He had to make several trips to his room to bring blankets. Then he proceeded to turtle under the blanket and poke me with his knees and elbows.

I realised there would be no wind-down this way. So I broke the cardinal parent bedtime rule which is don't make sleep interruption fun. I grabbed a chapter book to read the next chapter. It was an Avatar book. Which is a story about a world with people called "benders" who can supernaturally control elements such as air, fire, earth and water.

Gabriel listened as he kicked the shelf behind the couch where he lost the TV remote and had to go rescue it.

I finished the chapter and started discussing benders with him. We made some of are own up that got us both laughing.

Caffeine Bender: a person who would create waves of coffee to fight off sleep benders.

Video Game Benders: A person who could combine and win video games.

Word Benders: a person who could make wonderful stories and songs.

Baa Baa Benders: A person who can control sheep (real useful in a battle)

Snot bender: A person who could slime their enemies with balls of snot.

It digressed from there. I finally sent him to bed sure that the nightmare thoughts had been bended away. I guess I was a Nightmare Bender.

-Mom

Posted by Dad at 09:32 PM | Permalink | Comments (1) | TrackBacks (0)

I find common social graces amusing some times. While rushing Hannah to the hospital this Monday, I called the nursing agency.

"Hello. Thank you for calling Childrens Nursing company. This is B. How may I help you?"

"Ahh, Hi B, this is Janette, Hannah's mother."

"Oh, hi, how are you doing?"

This is the funny part.

"I'm fine." I always pausing as my internal dialog laughs at me. No, I'm not fine, I'm rushing Hannah to the hospital again. After the pause, I proceed. "I'm calling to let you know we have detected blood in Hannah's stomach and are taking her to the emergency room. I'm thinking will be spending the night, but I'm not sure. Could you let S. know so she can inform G. and let whoever is on call know that I will be calling when I know more."

As our van clicks over the freeway bumps, I hear the pause on the other end. I wonder what is going through B's mind. She is the new director and new to the medically fragile world. I had just said I was fine. And then I proceeded to tell her how un-fine things were at the moment.

But my technical mind (from being raised by an engineer) is in the driver's seat of my mouth, and it knows I'm fine, Hannah, on the other hand: well, that is a whole other bucket of thoughts.

--Mom

Posted by Dad at 08:02 PM | Permalink | Comments (0) | TrackBacks (0)

I just put Hannah's pulse oximeter on her foot. She is sleeping and her oxygen level is at 100 percent and her heart rate is down to 97. This tells me she is sleeping deeply and easily. I've been realising that I have been trusting Hannah's body to breath for a while now. This is a big step for me.

I remember going through the same thing with Gabriel as a baby. It wasn't till he was over a year old that I trusted his body to breathe for him and could let him sleep alone.

With this realisation comes a relief of pressure in my system. Parts of my body that haven't relaxed in four years are unwinding. I find myself being overwhelmed in moments of giddy sleepiness.

Of course as I been typing this the pulse oximeter keeps going off. It is having a hard time reading her heart rate. LOL

Mom

Posted by parents at 09:55 PM | Permalink | Comments (1) | TrackBacks (0)

This Saturday, Robert and I attended the All-Born In Conference.  Its emphasis was working with schools to include all children in all classrooms.

I must admit that I was giddy that Robert and I got a whole day to go out alone together.  We kept discussing our game plan to ensure we both kept focused on attending the conference (and not sneaking out to our favorite book store).

The beginning keynote speakers, Norman Kunc and Emma Van der Klift, were hilarious,  The other thing I liked about them is that one of the main themes of his Norm's speech, Being Realistic Isn't Realistic, was about how most people are hampered by perception.  He reminded us all to aspire to think like Houdini.  He was constantly pushing to do things instead of focusing on why he couldn't.

It was great to hear someone talking about what Robert and I talk about everyday.  We usually approach problems from the perspective of:  we would like to do this.  How will we make this happen?  

For example, I want Hannah to be able to ride bikes with the other kids on the block.  There is a 600.00 bike we are looking into.  In the meantime, I take her out in her wheelchair and push her around.  I've also modifying a low-rider trike with seat belts, feet straps and a pole to push her in it.  Somehow, someway, we'll all ride bikes together.  We just have to be creative and figure out a way to make it happen.

 -- Mom

Posted by Dad at 08:04 PM | Permalink | Comments (1) | TrackBacks (0)

Today, I was trying to get our family areas clean.  I'm not the best housekeeper especially when my kids ask me to stop and play with them.  But, for over a month I had been planning on hosting a Usborne Book party tonight.  With Hannah and Robert getting sick and me joining in the mucous fun,  my cleaning plans flew out the window.

So my gracious in-laws came to play with the kids and lend a hand with the cleaning.  Gabriel loved the attention so he pulled out his Star Wars Clone Trooper costume.  Then he carried around his little plastic bright green handgun from his police costume set.  I found it's hoister while cleaning the paper piles around the kitchen.  He wanted to wear it.  So I belted it on over the costume.  Later we put his star of David necklace on around his neck.  It was a pretty picture.

He later gave me a smile when I looked up and found him still completely costumed holding his baby doll and feeding it a bottle.

Unfortunately, my camera went through the wash and is not working so you will just have to use your imagination and speculate on how a camera ended up in the wash.

--Mom

Posted by parents at 11:38 PM | Permalink | Comments (1) | TrackBacks (0)

During the winter months I avoid taking Hannah to the hospital. Her trach allows for to easy access to her body for way-word germs. So this includes going to the specialists offices since their offices are in the same building as the hospital. They share air-ducts with the hospital.

So the past month has been a voyage of specialists catch up.

We have seen her Cardiologist (Heart Doctor), Pulmonologist (Lung Doctor), Gastroenterologist (Stomach Doctor), Orthopedist (Bone Surgeon), and Optomologists (Eye Doctor). So there has been a great deal of good news and some new projects to work on. I already have wrote that the hole in her heart has closed up and she no longer needs a Cardiologist. The Pulmonologist is optimistic that this may be the year her trach comes out. Her regular Gastroenterologist has passed away. So we had to meet a partner. The Orthopedist confirmed the scoliosis going on her in her back and she will need a brace and eventual surgery. The eye doctor said the astigmatism is still there and we need to get her glasses.

We still need to see the ENT (Ear, Nose and Throat Surgeon) and a Dentist.

Through the appointments the kids have been doing great but, I have been exhausted fighting a staff infection Hannah decided to share with me several months ago.

So I am in a state of flux and requiring more video game downtime for mental floss.

Mom

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

This morning I got up early and packed a bag of stuff for amusement and caught a ride with my father in-law to the county court house.

This was my first time of doing my social obligation of Jury duty. Most people seem to groan at the prospect of serving on a jury. I was excited. I get to sit in a room with adults and read a book, draw a picture or even work on some writing without any other responsibilities. Total heaven in my world.

There were some unexpected things. Such as even though the room was big it felt cramped due to the number of people in it. As it filled up I moved to a little balcony in the back with tables to help me with personnel space. The anxious air of everyone around me made it hard for me to read.

So I pulled out the AlphaSmart 3000 Robert got for me and started transcribing a novel onto it. Being so close to other people and not talking to them drove me crazy so I started engaging in conversations.

It never failed. After I engaged someone in a conversation they were called for the next pool of jurors.

The morning wore on, and the room looked to be down to about twelve to fifteen of us.

My number was finally called third to last and we were all excused to go to lunch till 1:15.

That actually gave me two and a-half hours for lunch. Cool I got to wonder around downtown.

I knew I wanted to go to the tea house by the courthouse. It is called The Stratford House. It has the most amazing Hungarian mushroom soup. But I thought it was still early, so I headed to the new gaming shop Avatar’s Lair.

There are two new card games I’m curious about. Truthfully, I just want to play Magic, but I’m on a quest to find a fantasy card game to play with Gabriel.

So I bought Kingdom Hearts. Besides I had to see Mickey and Donald in a warrior role. I realized I still had two hours, so I looked at the store clerk who knew nothing about the game and asked if he wanted to read up on it, and we could try it out. He jumped at the opportunity to learn a new game without the cost to the store and give his opinion.

Well the game has potential and still needs work.

I went to the teahouse and now I’m waiting for the summons to the courtroom.

And then I was excused at around 2:30. I had a fun day

--Mom

Posted by parents at 08:41 PM | Permalink | Comments (2) | TrackBacks (0)

Yesterday, we went to see Hannah’s heart doctor. He did an echocardiogram; Hannah no longer has a hole in her heart and no longer needs any special consideration on that front.

Yeah!

--Mom

Posted by parents at 10:23 PM | Permalink | Comments (2) | TrackBacks (0)

Thank you family for the joy you bring to the kids days every week.

--Mom

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

A couple years ago, Robert picked up the Beatles movie Yellow Submarine on DVD. We sing Beetles songs to the kids a great deal, so Robert thought the music combined with the bright images would amuse Hannah.

I thought it was a good idea, but it sat on our shelf for years unopened.

Last week, Gabriel noticed it. He wanted to watch it. I loaded it the player thinking its surreal quality would turn him off in about ten minutes.

I was wrong; he loved it. He watched the whole thing. Hannah was enraptured with it, too. Now everyday, for several hours of the day, he says, "Let’s watch Yellow Submarine!"

Meanwhile, I’ve just bought Enchanted and want to watch that all the time. I don’t want to watch Yellow Submarine. Really, I don’t. Not at ALL!. Plus the blue meanies scare me.

--Mom

Posted by parents at 09:18 PM | Permalink | Comments (0) | TrackBacks (0)

Zadie, Hannah’s grandfather, finished one of the dresses I talked about on February 2nd. I think she looks adorable in it. Zadie is an amazing craftsman.

Thank you, Zadie.

--Mom

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

The party was a success! My goal was to get Hannah in the caterpillar. I did.  She and I hung out inside for ten to twenty minutes, greeting kids as they came through. She laughed at seeing her friends outside of school.

We even tackled the hill in the middle with a steep slide. I handed her up to Gabriel, and he let her go on the top before I was ready. She was laughing even though she had landed on her classmates.

All in all, it was a fun day.

--Mom

Posted by parents at 10:04 PM | Permalink | Comments (2) | TrackBacks (0)

I was folding laundry the other day and found a white shirt of Gabriel’s that he wears to school often. Well, it used to be white. Now it had random multicolor stains.

Whenever I see blotches and ink stains, I see pictures in them. I pulled out some markers I bought a few years ago that work on clothes and don’t bleed in the wash, and I turned his stained shirt into the robots’ playground. I liked the way it turned out. No one has been able to spot the original stains yet.

--Mom

Posted by parents at 10:32 PM | Permalink | Comments (1) | TrackBacks (0)

The other day, Gabriel found a penny on the street in the parking lot. He was happy and thought it was pretty cool.

We got to the car. While I was unloading Hannah and her equipment, Gabriel was wandering inside the van. He tried to help with bag placement.

Well, in the middle of the tussle, he lost the penny in the car and started frantically searching for it. It was cold out and I was trying to get him seatbelted in.

I finally used the Stern Mommy Voice and got him to sit down. Meanwhile, he was going on and on about the penny. I reminded him that there are more important things as I was draping the seatbelt across him. In my mind, I was also thinking about the ride home and how my little drama king would go on and on about the penny. So I came up with a solution that would give me a peaceful ride home. All it would cost me was a penny.

When I’m the main caregiver with both children out and about, I don’t like to use a purse. It becomes another thing to worry about. So I wear Old Navy men’s cargo pants. I’ve nicknamed them Mommy Pants. They have nice sized pockets. I can carry my wallet, cellphone, keys and a small camera nicely sorted about my person. (I usually wear it with a pretty girly shirt)

So here is what I did. I pretended to look for his penny with my right hand while my left hand pulled my wallet out. Then I bent over like I found something and pulled the grubbiest penny I could find out of my wallet. Then I said, "Hmmm, I’ve found a penny." Meanwhile, I re-pocketed my wallet as Gabriel gushed at my cleverness. "That must be my penny!"

My father in-law, who was driving, smiled and exchanged winks with me. He also chuckled, "Gabriel, you have no idea how smart your Mommy is."

--Mom

Posted by parents at 07:19 PM | Permalink | Comments (0) | TrackBacks (0)

Since it was Hannah’s birthday we got a gift card for Build a Bear workshop. So, we went to the mall and went into the store. I try not to buy too many stuffed animals since three people in our house are asthmatic. Stuffed animals and dust mites are the very best of buddies.

The neat thing about Build a Bear is that they have all types of accessories for customizing ones stuffed animal. Hannah’s Elmo was bought there originally so all the outfits and shoes fit Elmo. We were just walking around in the store and we were about to leave since, Gabriel was having listening issues when I spotted a wheelchair for the stuffed animals.

I smiled and showed it to Robert. He looked at me and laughed "Well, you’ve got to buy it! You don’t know when you will find it again."

I mentioned on the way home that ," I wish it was as easy to buy a wheelchair for Hannah."

She outgrew her kid cart at least six months ago. It’s a long story. We are still waiting on her new one.

Since Elmo was getting the chair, I thought it was time to actually put a trach in Elmo. So I did that too. When I showed him to Hannah, she laughed and brought him in for a big hug. Then she bit his nose and eyes.

--Mom

P.S. I had to install a seatbelt for Elmo the chair didn't come with one. LOL

Posted by parents at 10:54 PM | Permalink | Comments (0) | TrackBacks (0)

Happy Birthday Hannah!

She is Four today.

Hip Hip Hip Hip Hooray!

Posted by parents at 10:34 PM | Permalink | Comments (2) | TrackBacks (0)

Several weeks ago, we as a family took the Max to Downtown Portland and visited the Portland Historical Museum. They were having an exhibit of Abraham Lincoln’s papers. President Lincoln fascinates Gabriel.

The first thing he will tell you about Lincoln is that he was shot by John Wilkes Booth with a gun in the theater. The next thing he well tell you is that he thought slavery was a bad idea. Then he will say that he was a super hero before he was a President.

My mind fills with images of Lincoln, with the top hat, wearing a mask across his eyes and a long, bright red cape flying in the air. I can’t help but smirk.

So we have found a collection of kids’ books about Lincoln, and Gabriel has some interesting things he likes to play with. He has a fake, five-dollar bill with Lincoln’s picture on it. He likes to pretend that it is a badge and that he has been appointed as a spy to find slavery and stop it. He has a necklace he made at school with a penny glued to it. He likes to wear it and calls it his amulet. He seems to think it might have some magical abilities. He has not told me what they are yet. I just watch him mumble and show it to imaginary people.

So when we saw that this show was so close, we thought we should check it out. We wanted to encourage Gabriel’s interest, and I was curious what the gift shop would offer. Truthfully, I was looking for a Lincoln action figure. They didn’t have one, but they had copies of his writings in his handwriting. We purchased those and pencil toppers of Lincoln’s head.

So when I get spare time, I plan to turn one of the heads into a Lincoln action figure. Right now Gabriel talks to the head and uses it with his other figures.

--Mom

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

I’ve just found out something new about myself. When either of my children hold their breath, I do too. It’s involuntary and just totally weird.

It sounds strange and irrational, but that is what I found out yesterday.

Let me give some background here:

Since Hannah has a tracheostomy tube to help her breath, she requires suctioning of that tube on a regular basis. To be graphic, a good ball of mucous can make it so she can’t breath through the tube. To suction, there is a machine that creates a vacuum and pulls air into a canister. Attached to the canister is a long tube about a centemeter in diameter. There are one time use attachments that are sterile that I hook into the tube and send down the tracheostomy tube. When I do this, besides removing all of the mucous and debris form her tube, it also takes all the air from Hannah during those moments. As a safety measure, I always hold my breath so I have an idea how uncomfortable it is. I can not take extra air because Hannah didn’t get a chance to. It is a great safety technique and I always keep in mind that Hannah lungs and capacity is even less then mine.

So anyway I’ve been doing this for about three years. Yesterday, Gabriel was trying to make me laugh. He gets these random ideas that certain things will be funny. So he holds his breath and hums with puffed out cheeks. Though I’m sitting there not copying him, I found myself holding my breath. He keeps doing it. Within about 5 minutes, I’ve developed a headache. I, at first, can’t believe it. I can just not hold my breath, right? I try to just breath; it doesn’t work.  Every time he holds his breath ,so do I.  It has become an involuntary response in me. So I place a book in front of my face to block watching him. He takes that as a challenge and dodges the book.

I start to get dizzy and a little queasy. I’m dealing with a child in super silly mode, and I’m stuck in some weird conditioning I’ve done to myself. I sit there trying to find a way out of the situation. I really try to not be unrational with weird demands, but my head had begun to throb. I look down at Hannah playing with her toys. I think to myself:  do I want to break my self-imposed conditioning?

Internally I answer nope: I want that safety net.  I want to be totally aware of what I’m doing with my child when suctioning. It is not a time to break this habit. So I coax Gabriel to sit next to me and try to explain things. I told him there was nothing wrong with him holding his breath, and then I tried to explain what was happening to me.

He interpreted that as he needed to cover his mouth. It still didn’t work, so I think I finally decided on distraction with a favorite TV show.

Parenthood can be so bizarre sometimes.

--Mom

Posted by parents at 12:15 AM | Permalink | Comments (0) | TrackBacks (0)

Saturday morning, Robert, my generous husband, let me sleep in. When I woke, I found Gabriel, Robert, and Hannah on the floor in Hannah's room watching a promotional video of Disneyland filled with songs. Robert had Gabriel’s megablock marvel action figures talking to the TV screen. He had the figures responding to the songs and content. Gabriel was laughing and Hannah was trying to get a hold of one of the figures to chew on them.

I laughed along and told Hannah to be careful: Wolverine could become sharp if his claws came out.

I never get tired of mornings like that.

--Mom

Posted by parents at 09:51 PM | Permalink | Comments (1) | TrackBacks (0)

Ok, I think I’ve made a break through with Gabriel today. I’ve become Dictator Mommy working on reading with him above everything else. The poor child has to work on reading books with me before we do anything he chooses to do such as video games or watch his favorite shows. Today, he picked a book that was pretty hard for him. I’ve been focusing on sounding out letters which worked for me, but that doesn’t seem to help him - just frustrate him more.

So today he said, "Mommy can’t you just read a line and have me repeat it?"

I cocked my head and thought about how Robert reads "Ok, let’s try it your way." It went smoother, and I had him reread each page after we finished each line. I think our focus will be on exposing him to written words over and over. It is sad that this has to happen in Kindergarten, but my goal is to getting him reading well by first grade.

Hannah is showing more stability in the standing department. Today, watching her with her physical therapist, she seems to be excelling.

I am internally shushing my negative voice who talks about how a great deal of progress seems to involve three steps forward then four steps back. I’m trying to blow up Sisyphus’s rock in my head. Hmm maybe chocolate will work. Or a blast of Elvis Costello Music.

--Mom

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

In Portland, we have a museum that everyone calls OMSI which is an acronym for the Oregon Science and Industry Museum. Robert and I love it. Gabriel enjoys it, too. Well, they just got a dinosaur exhibit in. With Gabriel getting to see the live show Walking With Dinosaurs, I thought it would be great to go to the exhibit.

Hannah had a doctor appointment downtown Portland this week, so since we were already driving downtown, we decided it would be gas-efficient to go to the OMSI too.

Hannah loved being in a new place; she looked at everything. When I tried to get her to feel some of the hands-on exhibits, she turned her head and pulled her head away. It was way too much stimulation for her. She was just happy being in her wheelchair and being pushed around.

Gabriel found a display area where the curators had made a pretend dig site. It was a walled off area full of rubber bits that looked like pebbles; within these bits were hidden great big wooden pieces that resembled dinosaur bones and could be assemble in a great, big 3-dimensional puzzle of a stegosaurus.  I think that is what it was. Gabriel went in and stared at the pieces, then looked at me. "Mom, could you help me please."

Inside I was thinking, Oh my god, he wants to do a puzzle. How totally cool! Definitely not one of his normal past times. He knows I love them though.

My father in-law was there pushing Hannah around. I looked at him. He gestured for me to go ahead and started pushing Hannah around.

I walked into the pit and got down on my knees. The pieces where big and unruly, but had numbers engraved in them to tell you which piece was which and what notch it interlocked with. I figured all we would get done was try to get it to stand up. I found the first big backbone and Gabriel started handing me ribs. I pointed out the numbers so he could start putting things on with out my help. Another mother and child came and they started helping. Soon other children were coming calling out numbers and asking me where they go. Within a blink of the eye, the pit was swarming with enthusiastic kids working together to assemble this dinosaur at a frantic pace. I looked around because we still hadn’t got it to stand without help and the other mother looked at me from outside the pit and shrugged. A worker at the museum stared at our chaos with his jaw dropped. Finally a volunteer came in and took over supporting the structure.

By the time I walked away, it was a dinosaur. I can’t believe I forgot my camera that day. I thought it was neat that all the kids saw an opportunity to help and jumped in.

--Mom

Posted by parents at 12:31 AM | Permalink | Comments (1) | TrackBacks (0)

I just spent several hours working on valentines for Gabriel’s classmates. Why did I do this?

I am getting the magazine Family Fun Magazine monthly in my home. Since Hannah was born, I gave up on most of the parenting magazines out there. They just couldn’t address the whole disciplining a child who can damage herself when left alone by pulling out her tracheostomy tube or her stomach tube. I also found the milestone stuff unhelpful. So I didn’t renew.

My brother in law, who is a stay at home Dad, introduced me to Family Fun Magazine with a couple of its ideas. It didn’t contain pages and pages of parenting advice; instead it contains ideas for having fun together as a family with different ages involved. This I could look through.

I liked that the alien wasn’t smarmy and I changed the words inside to: "Have an out of this world day!" When I was a kid, I always found the messages on store-bought cards a little too amorous for my tastes.

Robert and I don’t do Valentines Day ourselves.  We don’t feel the corporate world needs to tell us when we should do romantic gestures. So I didn’t even put the word Valentine in the words in card. Hopefully, the valentine readers will get the gist.

Of course, half way through the twenty-five I was making I realized I could of just bought two boxes for two dollars each, but what would the challenge in that be. I used up all the green construction paper in the house so I had to do a few in another color: blue. I found where I hid the pipe cleaners, and then I went to the computer and uploaded an alien city doodle from my sketchbook for the interior.

My boss, Gabriel, loved it. He took off with the demo piece to have practice conversations and bring it to life. At least he likes them. I do realize that their recipients will look at them once for about two seconds then toss them.

Hmmm what should I do for Hannah’s class?

--Mom

Posted by parents at 11:29 PM | Permalink | Comments (0) | TrackBacks (0)

Once in the while to clear my head I go on an outing. Hannah is becoming more mobile so one day I took her to the JoAnn fabric craft store. I love looking at raw materials. Hannah just enjoyed being out and the colors and shapes. It is also dangerous place for me. I try to stay in the bargain fabric area.

Since Hannah breaks out from most fabrics, her grandfather Zadie has become her designer slash tailor. He found elastic without latex and makes all her pants to protect her delicate skin from the rest of the world. So I cruise the discount fabrics for 100 percent cotton fabric for her clothing needs. I still can spend more then our budget allows.

As we were walking through the higher priced fabric section Hannah said the word "Wow!"

It was a dress on a little girl mannequin. All two toned and shiny. It was adorable. I eyed the pattern hmmm 10.00 dollars. I better talk it over with Zadie before I invested in it.

Over the next few weeks I had a casual conversation with Zadie. I mentioned we could use it as an incentive for walking. Truthfully floor rolling it is not practical in a dress.

He laughed, "I’m making it anyway!"

Have I mentioned I love him? So this Friday for my alone time I went back to JoAnn’s and procured McCall’s Pattern M2590 and then had fun shopping for fabric. I ended up with a beautiful 60’s inspired pink oval fabric for the skirt part and chose a brownish magenta that was used as the outline in the ovals for the top half. That was for Zadie and me, of course, Zadie demands she wears pink, and he’s right she looks great in it. For Miss Hannah who loves yellow, I also ended up with a bright yellow zigzag fabric for another skirt part. I found a solid burnt orange color that was the same as a color in the zigzags for the top half of the dress.

I’m quite excited. I don’t get to do this kind of thing too often. I actually was looking forward to these kinds of things when I found out I was having a girl.

It is amazing the most inane things can give you a lift in your step.

--Mom

Posted by parents at 10:26 PM | Permalink | Comments (1) | TrackBacks (0)

Hmm I’m not sure what to talk about. The past couple of months I’ve been gearing up for the procedure I had done yesterday. It wasn’t so much about the procedure but about who will take care of Hannah as I recover. No heavy lifting for at least 3-5 days.

I had an Endometrial ablation. I’ve had an increase problem over the years with extreme monthly cycles where I could bleed through more then one feminine hygiene product in 20 minutes. The cramps would double me over and I would become anemic. Dealing with this once a month is very difficult with the demands of our family so I consulted a doctor. They suggested this procedure. They pretty much cauterized my uterus. So, hopefully, the monthly inconvenience will be little more then a small one from now on.

I haven’t talked about this before, because I find most people are not comfortable about these types of conversations.

Some things leading up to the procedure were funny though.

Part of the decision process is deciding not to have more children. It is a removal of the nutrient layer of the uterus. As soon as I made the decision to go through it, my uterus had to voice it’s opinion with ghost kicks like I was pregnant. I would smile pat my abdomen and say internally "Ah I remember that, but I also remember the 24 hour throwing up, agonizing back pain, and the insulin shots. You are not going to win this, uterus."

My heart then got jealous that it wasn’t getting enough attention, so it raised my blood pressure to alarm everyone around me. I had to chart blood pressure for a week and be put on two blood pressure meds. Once I recover, I need to readdress these with the doctor because it takes a half –hour for my hands to wake up in the morning and that doesn’t work well when I need to operate a suction catheter for Hannah. (Hannah had pneumonia this weekend)

The day of the surgery there were ice alerts on the road, and my surgeon was late because she had to shovel her driveway.

Luckily, I find these things amusing. I always find it amazing when a plan comes together.

--Mom

>  Extra clarity/punctuation edits from Dad on 1/30/08

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

Coolness

A few weeks  ago when Hannah was buckled up and ready to go home from preschool the nurse looked at her and said "Hannah, do you want you pacifier?"

Hannah who had been babbling joyfully paused and in a clear high voice said "Cool!"

I looked at the nurse "Did you hear her say cool to?"

She smiled "Yes, Hannah said cool, I guess that means yes."

I was ecstatic as I related the story to Robert when we picked him up for lunch.

--Mom

Posted by parents at 09:10 PM | Permalink | Comments (1) | TrackBacks (0)

I need to celebrate that I have home chore appliances daily. My washer broke down a week and a half ago. There are four people in our house.

Besides the regular laundry load of most houses we also have Hannah. Hannah breaks out from her own secretion. We change her bedding daily. She is breaks out from most soaps and most paper wipe products. We use 7th generation diapers and washcloths. The carpet on the floor will also cause a rash. We have a large number of blankets we keep on the floor to create a barrier between the floor and Hannah. The other great laundry generator is her G-Tube she is still working on mobility so on a daily basis we end up with a tube disconnect that results in spilled partially digested formula on blankets and Hannah's clothes.

So we generate a great deal of laundry.

I can't just go to a laundry mat Hannah lacks the patience.

We have commandeered some of our family’s machines.

The other night on a night shift I decided to hand wash in our bathtub. I'm lucky all I had to do is turn on the water and add soap. But, just the scrubbing and friction creation took a great deal of work. My great admiration for our forebears was strengthened more.

So while I was agitating the clothes in the tub Gabriel was getting ready for bed.

Swish, scrub, swish! Gabriel was brushing his teeth with his mouth for of suds he asks me.

"Whatcha doing Mom?"

I wipe my brow "Our washing machine is broke."

He sighs "I know" he keeps brushing his teeth but the expression on his face was of someone still trying to understand.

"I'm washing our clothes in the tub like people in the old days did before washing machines.

"He swished the toothpaste suds in his mouth and spit them into the sink. "You are sure smart   Mom."

--Mom

Posted by parents at 09:54 PM | Permalink | Comments (0) | TrackBacks (0)

Today I cleaned out Gabriel’s backpack out after school. I found his empty lunchbox and a drawing. The drawing was unique in that Gabriel rarely does artistic things. He seems to think he has more important things to do. The picture looked clear. It had two figures and a swirl between them. I knew immediately that it wasn’t his normal family picture, so I asked him.

"Hey Gabriel, this is cool. What is it."

He looked up from his gameboy. (Yes, he can whip it out that fast) "Oh that is a picture of God creating good and bad."

I felt the blood rush to my head in pride. My boy is getting Jewish concepts in a secular Christian culture. I immediately went to my bedroom and called Robert, interrupted him at work. I had to share this with him. I could hear his face smile and a thoughtful expression fill his face as he said "Interesting."

--Mom

Posted by parents at 06:05 PM | Permalink | Comments (1) | TrackBacks (0)

Before I had my children I was a certifiable nerd I had a Magic the Gathering Tournament ID card for playing in Magic tournaments. During the Winter Holiday I got to play in a Magic Tournament. It has been over six years and the cards have changed and I have found that I have become more ruthless in the game. It’s still as fun and exciting as ever. The paradigm shifts, which are the part of the game I love, are as strong as ever.

Today, I started Gabriel on the road to fantasy role-playing games. We took out the card Game of TMNT a pretty fun game within it’s self and tweaked it. Gabriel wanted the none transparent cards to battle each other. So here is what I did.

I shuffled the cards and put them in a communal stack between us. I dealt each one of us one card. Then I had each of us roll one 10 sided dice to determine each characters life points. We then took a stack of white poker chips for that number and put it on our respective characters. We then rolled a 4-sided dice to determine how many points a character could attack for. We put red poker chips on the character to let us know how many points the creature could attack for.

So then we started the game play I had the person whose turn it is roll a six-sided dice. That determined how many times that creature could attack that turn. So if a player rolled a four they could attack four times. When a character was attacked we removed the white poker chips in the increments of the attacking cards red chips.

It is a start and Gabriel got a good visual on the concepts of attack and defense as used in role/card fantasy games. (It is a sneaky way to do represent math concepts too.)

--Mom

Posted by parents at 10:06 PM | Permalink | Comments (2) | TrackBacks (0)

 I got to get out during Robert’s vacation to see a movie that I’ve wanted to see: Juno. The movie is about a pregnant teenager dealing with all that entails. Juno is not preachy, but comical and heart-warming. I know the subject is nothing to laugh about, but the dialog and relationships feel real. If you get a chance to see it, I think you would be delightfully surprised.

One of the other aspects of the movie that I loved besides the dialog and acting was the soundtrack. Robert found me trying to find the soundtrack online. I loved the song "Anyone Else But You" by Moldy Peaches. It had this folk quality with a modern turn. It summed up one of the main sentiments of the movie and captured its quiet sparkle. The song haunted me.

Robert, the ex-DJ, music retailer, and collector of all-things-music, hunted it down for me. He bought me my first MP3 player and loaded it up.

I really can’t imagine loving anyone else but him.

--Mom

P.S. Robert saw Juno on my recommadation too.  He enjoyed it.  We quote lines from the movie back and forth now.

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

The other night, Gabriel, Robert, and I went out for a late dinner at Red Robin. Gabriel and Robert were in the middle of some silly play with the triangle ad piece on the table. It was a spaceship or something. I started coloring the whale on Gabriel’s placemat with checkers. I showed it to Gabriel and called it the Checker-Backed Whale.

Gabriel smiled, and Robert looked thoughtful at it.

Gabriel and I have been playing a new card game called The Storybook Game by Fundex. It is a game where the players collaborate to make a story using cards to move the story.

So I said to Gabriel, "Once upon a time, there was a Checker-Backed Whale…. Your turn"

He cocked his head at me and said, "Once upon a time, there was a Checker-Backed Whale who went to the surface and met a seagull."

Ok, the idea of the game is to repeat what everyone else says; then add on.

I looked at Robert expectantly. He smirked:

Once upon a time, there was a Checker-Backed Whale who went to the surface and met a seagull. The whale said, "I’m bored."

The seagull said, "I know a game we can play on your back. Since it is checkered, let’s play chess."

The whale said, "Ok."

The seagull said, "Don’t move." They played chess.

So this went on for a while, and the whale felt dehydrated. "I would like to move," he said.

The seagull said, "You can’t. You will ruin the game."

So the whale sat there and died.

So the moral of the story is: there are more things to life then just playing games such as moving, eating and breathing."

All I could say after I laughed was, "Aesop has nothing on you, Robert."

--Mom

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

As we mentioned a few times, Hannah loves music. A few months ago, a physical therapist sang the rhyme "Peas Porridge Hot" to Hannah.

I always end with an expression of "Ewww gross!" That use to start Hannah giggling; now, she still smiles.

Since that day, this song has usurped "Patty-Cake" as Hannah’s favorite clapping game. If I sing "Patty-Cake," she shakes her head "no." It is all about Peas Porridge now.

Well, in the past week, she has made a breakthrough. I have been trying to teach her to clap, then hit my hand with the words. She is starting to do it and laughs if I mess up the order. On the word "hot," we slap our right hands together. On the word "cold," we slap our left hands together. On "nine days old," we clap both hands together.

This is amazing to me. Gabriel never had patience for this kind of thing. She also mouths the words "hot, cold and old" as she plays with me. She then signs more song and grabs my hands and starts them clapping.

She amazes me everyday!

-Mom

Posted by parents at 07:55 PM | Permalink | Comments (1) | TrackBacks (0)

I grew up celebrating Christmas. It wasn’t the religious version; it was the full on Santa-centric holiday. It was fun. I got so excited and believed in the magic of Santa and his flying reindeer.

I am now Jewish. I must admit that giving up Christmas was not easy. When Gabriel was born, I realized I wouldn’t get to share that idea of magic in the world through him.

One of my friends who has been Jewish all her life explained to me that the excitement and wonder is still there. During Chanukah, a child never knows where a present will come from or when. It’s eight days of fun and surprises. That is how I pass on my winter excitement to my kids. The neat thing is I get all the credit for the gifts too.

My only concern remained that I keep Gabriel respectful of other people’s holidays. I didn’t want him ruining other children’s holidays by telling them that a certain person doesn’t exist. So, for the past few years I explained to him that when Santa fly’s over our neighborhood, he sees a giant six-pointed star over our house. That way he knows he doesn’t need to stop because Gabriel and Hannah get enough presents from their family that they don’t need anymore.

He accepted that.

This year he had more questions. So I told him the truth and explained that it is a game played by parents with their children. Only the parents should tell their kids that Santa is not a tangible being.

Tonight we were hanging out with family and my brother in-law and his son, who is three, celebrate Christmas. I did some of the traditional adult-to-child conversations with my nephew about getting to sleep and sleeping all night.

Gabriel, puzzled, leaned over and whispered to me, "We don’t tell J, right that Santa is not real."

"Yes, Gabriel" I whispered back, "we help Uncle K with his game."

Gabriel giggled.

--Mom

For those of you who expect a visit from the bearded gentleman.

"Merry Christmas!"  

Posted by parents at 10:02 PM | Permalink | Comments (1) | TrackBacks (0)

Life with an equipment-supported child can make the simplest task complicated.

This week we had two nights unexpectedly uncovered for nursing care. The nurse for these shifts got sick, and there is a shortage this month, so that meant two nights in a row of Robert and I doing the night shift. I'm not complaining - it just causes stress on my body. My immune system crashed, and I’m dealing with pink eye and a throat infection.

I needed to go to the doctor. I called the doctor’s office and the only available appointment was 12:15. Luckily my in-laws have moved to town this would have been more complicated before. My father in-law came and picked me, Hannah and her equipment up.

We went to the office and were directed timely to an examination room. For some reason, the offices were out of strep testing kits, and they needed me to go downstairs to the lab. So my father in-law and I started packing up Hannah and the equipment.

"Oh, you two can stay up here," the aide said to my father in-law (who was carrying Hannah).

"Nope, he is not qualified to care for her," I said cheerily. My in-laws have still been settling and haven’t had the time to learn how to suction, vent, change a trach, or change a g-tube. All could be needed at a moment’s notice.

The women stared at me, confused. This is a medical professional; I assume she was an aide and not a nurse.

My father in-law and I started gathering bags containing the portable suction machine, back up trach, and g-tube supplies.

"You can leave your bags here."

I smiled "No, I can’t"

--Mom

Posted by parents at 09:52 PM | Permalink | Comments (2) | TrackBacks (0)

Since, the school bus punching incident. I had a heart to heart talk with the mom of J at the bus stop. She shared her frustrations on situations at school with me. I understood them.

It reminded Robert and me of the inability for public school to handle anyone slightly out of the common mold. We had the family over for diner. When the boys were engaged in a video game, we shared the information on person centered planning, Robert and I have been using, this concept, to address the school system about what we want for Hannah. We hoped it would help them get a way to start a better conversation going on with the school.

The four of us worked on Gabriel and J communicating with each other.

Hopefully the aggression towards Gabriel will stop.

--Mom

Posted by parents at 11:15 AM | Permalink | Comments (0) | TrackBacks (0)