--Mom
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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
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"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
]]>In fact, if you run into my brother, he'll happily tell you the story of the last meeting: a night at the pub. K. arrived in the area via mass transit with some sense of where the pub was. K has an excellent sense of direction. I've seen him drop into an unknown city with a map and have it down pat pretty quickly. On this occassion, though, he walked toward his destination. And walked. And walked some more.
Some time later, he called a cab and gave them the location he couldn't quite locate. And the cab drove him back more or less to the spot he started from. Apparently, he should've gone a few feet this-a-way instead of that-a-way.... (Oh, the price of a dads' day out plug for K ;-)
Here are the Dads' picnic details. You can also learn more at the Dads' group website:
Our family will hopefully make it. Maybe we'll see you there - provided we don't get lost (can you tell my brother and I are fifteen months apart?).
-- Dad
]]>About six months after Gabriel was born, I decided it was time to indoctrinate him in the wonders of cinema. We headed to the local Bellevue, WA megaplex where he promptly fell asleep. We wandered into the theater, waiting for The Rookie to start, the infant Gabriel asleep in my arms.
The local ads played. Gabriel slept. The curtains closed and reopened to bombastic coming attraction trailers. Gabriel snoozed. The movie began with a quiet, coming-of-age montage. Gabriel woke with a start and screamed. And screamed. And screamed.
Thus ended our first father-son movie experience.
For Hannah, Janette and I waited until about a year ago. As a family, we descended on the theater, waiting for the latest animated feature to start. Hannah sat in her wheelchair beside me, then Janette, then me as Janette and I took turns entertaining her prior to the movie's start.
The movie began. Hannah considered her options. She reached out to Mom, then me, requesting removal from her wheelchair. Then she began to scream. And scream. And scream.
Janette and Gabriel remained behind to finish the movie (they didn't - Gabriel got bored half-way through) as Hannah and I strolled the mall, keeping perpetually in motion per the Princesses orders.
Gabriel's theater behavior has certainly improved since he was younger. He can now sit through a movie with only one gotta-go gotta-go theater break, a few loudly blurted plot questions, and a sugar enhanced need to dance in his seat. The jury is still out on Hannah, though, so this weekend, when the theater bug hit, we decided to stay home and introduce the kids to E.T. - The Extra Terrestrial.
Warning: movie spoilers ahead. Read no further if you have not seen, and wish to see, E.T.
I picked the movie and promptly received a lukewarm response from Gabriel. Janette and I explained to both kids that we were going to watch a movie together as a family, and Gabriel and Hannah settled in for some enforced family time.
As the movie began, the kids, of course, came 'round. Gabriel laughed at all of Elliot's and E.T.'s funny bits; Hannah giggled everytime Gertie opened her mouth, particularly when she tried to teach E.T. to speak. As tension mounted in the last half of the movie, Gabriel paced anxiously. He settled next to Mom on the couch as E.T.'s health declined, begging for confirmation that E.T. would not die. He sobbed and Mom rubbed his back.
As E.T.'s health suddenly improved, Gabriel laughed. Hannah clapped as the action picked up and cars chased bikes. As the movie closed, Gabriel expressed, and Hannah seemed to agree, that the family movie night had not been so bad after all.
Next, Gabriel requested the special features disk (his end all/be all for all DVDs). He navigated through it for about five minutes, then proclaimed, "I'm done now. Can I play Wii?"
And thus ended our family movie night - without any screaming.
-- Dad
]]>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
]]>Sister came. As part of our in-and-out-of-the-hospital medical dance, Gabriel headed to preschool. There he met a girl who owned a cat. One day, Gabriel pulled his pretend sister out of the toy bin and dubbed her "Coco" after his friend's cat.
Thus, Coco was born.
Coco has had a varied life since. She has re-emerged at different times with different roles. Gabriel introduced her to Hannah (not interested). A few years later, Coco had a brief, but exciting life as what Gabriel loudly proclaimed as "Suuuuper-baby!" And then she returned to the bin. And waited.
This week, Gabriel re-unearthed Coco. Coco, the practice baby sister named after a cat, the former superhero, has gone through additional changes. Coco, for starters, is now a baby brother. Coco also has an interesting lineage.
"Where did your little brother, Coco, come from?" I asked a few nights ago. We were all piled into the car, seeking a bad-for-us-but-quick fast food dinner. Janette sat beside me, motioning, NO, don't start.
"Um, God gave her to our family!" Gabriel proclaimed. Hannah, sitting beside Gabriel, seemed unphased by this extraordinary news.
Janette shook her head. She knew I couldn't leave that alone. Gabriel has been poking at God for about a year, exploring. We've encouraged him to think and feel his way through, helping him search for answers to his own questions on the subject.
"How'd He do that?" I asked. A groan erupted from the seat beside me.
"Coco came down from the sky!" Gabriel said.
Gabriel and I continued our conversation, exploring the what-ifs of a special-delivery baby like Coco. I muttered what a hard life a messiah might have, and in an unusual recognition that I was crossing The Line (with some help from Janette beside me), I turned the convesation in a different direction.
We drove on, completed our fast food order, and headed home.
It is interesting to watch Gabriel explore the Big Issues: where do we come from, what will happen to us when we die, etc.. We step in to help him explore (sometimes with humour - see above), but I really do want to encourage that exploration: not force the stamp of my own beliefs on him. I recognize that's maybe a lot for an almost seven-year-old to digest, but Gabriel seems to be doing fine with that room-to-think and room-to-invent.
I want the same for Hannah. She, too, is exploring her world. Although she sometimes (not as often these days) lacks the words or the expressions, I imagine she has some similar questions beginning to form. And her perspective on life, death, God, and all of it may be entirely different than Gabriel's. As Hannah's questions emerge, we'll help her walk through them, too.
In the meantime, Gabriel's pretend little baby brother, Coco, is thriving with the attention. Gabriel has learned to change Coco's diaper, and Gabriel believes this will train him to help change Hannah's. Interesting after all these years that Coco's original purpose is, strangely, still intact.
-- Dad
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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This is Hannah at 5am. Yes, she will be embarrassed by this picture some time in the future, but maybe that's just a little bit of payback for her many early morning wake-up calls? Would I be that vindictive? Maybe. Ok, yes! Definitely, yes!
Tonight, she was not a happy camper and began crying almost as soon as I started my 2am shift. With some albuterol, she has settled back in comfortably: asleep for the time being....
-- Dad
Thus the seed was planted. I hadn't been to CostCo for awhile. At home, Hannah was going batty without a trip outside for a day-and-a-half, post-surgery. I reasoned we could use a post-dinner family trip. CostCo seemed like the ticket.
So after dinner, we (we being Janette - thanks, honey!) packed the kids up and headed out to CostCo. We happen to live within a stone's throw of the what may still be the biggest CostCo store worldwide. CostCo opened the Hillsboro, OR store as a new concept store: lots of display space for furniture, those food taster people, etc.. It's quite the browsing and shopping adventure.
We popped over to CostCo, unloaded Hannah's wheelchair & the kids, grabbed a cart, and headed inside. Hannah was unusually well-behaved and patient as we strolled the isles. She alternated between looking at all the stuff whizzing by and admiring the highly placed lighting in the warehouse's ceiling. Gabriel jumped and skipped along the pavement until we advised him to slow down to a walk. We came, we saw, we shopped.
As anyone who has ever shopped CostCo knows, you go in for one thing, maybe two, and exit with twenty. I'm usually the first to moan about the total bill while obscuring the fact that many of the unnecessary items in the cart are mine, all mine!
This shopping trip was no different. In addition to milk and the almond snacky thing, we purchased blank DVDs and CDs (we were running low), Instant Immersion Spanish DVD-ROM (hey, ten dollars off with the sale ending today), turkey jerkey (makes the night shift run better & low in fat...), batteries, etc.. Yes, most of the extras were for me or for the kids. Janette fared rather poorly in this trip (sorry, hon).
While Janette checked out, I took the kids over to the snack area. This is Gabriel's main focus from the point we announce a CostCo trip, walk through the door, stroll the aisles, take the unplanned but mandatory potty stop (announced when we are standing at the warehouse's furthest distance from the restrooms), and prepare to check out. Schoolwork and reading? Focus is an issue. CostCo's snack area? Focus is Gabriel's first, middle, and last name.
Gabriel, Hannah, and I walked over to the snack area. Gabriel and I ordered up two churros (his & Mom's) and a chocolate frozen yogurt for Hannah and me to share. We all sat nearby, waiting for Janette to emerge from one of the long cashier lines a hundred plus feet away.
For Hannah and me, I grabbed two plastic spoons. We took turns with the chocolate frozen yogurt. She feinted and jabbed for control of the spoon. We negotiated, sharing control as the she tasted the yogurt, allowed some to drip out of her mouth, then motioned for the spoon again. While Hannah and I performed our dance, Gabriel sat beside me, chomping at his churro.
That's when I heard the spoon snap. Hannah had been chewing on the spoon more than the yogurt. The snap was short and quiet, but I was paying pretty close attention. I dove into Hannah's mouth and quickly discovered and extracted the small sliver missing from the spoon in Hannah's mouth. I compared it to the main spoon fragment, making sure the two pieces fit perfectly together (i.e. no missing remnants in her mouth).
Mental note: scratch any non-permanent spoons from the list of things Hannah can put in her mouth (these non-permanent spoons will keep the recently exorcized pacifiers company).
Janette rejoined us soon after. I relayed the new No-Plastic-Spoons discovery as we finished our desserts. Soon after, with Hannah completely tantrum-less, we headed home to begin our nursing shift.
-- Dad
]]>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.
]]>After some tons of database issues at our server (Yahoo, if anyone's interested), we may be back up and running. Thanks to:
* Barbara at Ther Extras, for letting us know our comments were down
* The handy search/blog forum that came up when I typed in the error code my computer was shouting at me. At least it made me think I might be able to fix something (ended up being a problem on Yahoo's end)
On to bigger & better things. Thanks all for your patience.
-- Rob (Kintropy's Dad)
I'm not sure to which characters the kids will attach, but I do know one thing: Hannah will not be claiming Tigger as her favorite.
Last night, one of Hannah's favorite nurses introduced Hannah's new toothbrush: a Tigger electric toothbrush. At its base, Tigger sits on a log in an upright, ready-to-pounce position. His stomach houses the on-off button, and the toothbrush itself sprouts from his skull. Yes, not only does Tigger have very human traits; Oral B, under what I'm sure is a strict licensing agreement, has transformed Tigger into a family-friendly cyborg!
I was sitting on the couch in the family room when Hannah began to scream. It wasn't a I'm-not-happy scream; it was a nightmare shriek worthy of B-movie credits.
I walked back and asked the nurse, "Her head start spinning yet?" Pictures of Regan danced in my head.
Hannah's nurse, J, was both comforting Hannah and trying really hard not to laugh, I think, at the strangely virulent reaction Hannah was showing to a toothbrush. Hannah settled down into sobs for a moment, glanced wearily at the nearby countertop, spotted the toothbrush, and renewed her shrieking.
J worked on comforting Hannah, and as she returned Hannah to her room, Tigger the Terror Toothbrush disappeared. I walked into Hannah's room, picked her up, and held her. Her sobs slowly receeded as I sang to her.
Poor Hannah. Poor Tigger. I'm hoping she'll find something to love in Pooh. Or Eeeyore.
-- Dad
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Don't mistake that twinkle in Hannah's eye for camera red-eye. The family is singing together in the kitchen, Mom is taking the picture, and Hannah is encouraging us all!
-- Dad
P.S. Note the Huskies shirts: football season is almost here. Preseason football on tv: can Mom be any happier ;-)
]]>Hannah squinted, processing. She turned her head right and scanned slowly up and down her arm. She turned her head left. She scanned up and down her left arm, turning it as she looked. Then she looked at me, Gabriel, and Auntie 'O and waited for some assistance.
I clapped for no good reason. "You got it! Shirt!" I was impressed she had made the connection to what Janette had said, had processed it, and had thought through how she might execute the request.
Hannah continued to look at me. I interpretted. "Yeah, Dad. Got it. Shirt. Stop. Really. You're embarrassing me."
-- Dad
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