Un-Addicted

Well, like that's even possible. . . . But I won't be tied to the big black suction machine anymore. I just wish there wasn't such a lag between stopping and producing milk. I hope this passes before the plane on Tuesday. Mentally I am finally totally ready to do this. I have been enjoying all the extra non-pumping time alot lately. It's so nice not to HAVE to drop everything to run to the couch and pump (or sometimes the car). And I just can't imagine having to take the boob vacuum on a plane at this point. It's big, it's bulky, and it's gotta be suspicious to the TSA! It'll be hard enough dealing with Jordan's medicines and frozen breastmilk while travelling, but I'm sure we'll manage.

Ahhhh, free at last, free at last. [Ouch!]

+/-

It's a little hard to see, but notice the bubbles of flem & mucous on Jordan's hand (draining from her mouth). Nice, eh?!

"+"

• Jordan was up hacking from 04:00 to 06:00, so I got two quiet hours to do things on my list


• Jordan fell asleep, finally, after spewing out a whole bunch of annoying flem & mucous


• Excited to go on all these doctor visits hoping they can shed some light on medical mystery Jordan (and help us make her life and our lives better)


• Excited that the boys are pushing to finish up the basement walls

"-"

• Jordan was up hacking from 04:00 to 06:00, so I wasn't sleeping, and I'm really not a morning person, so not as efficient 'working' in the early a.m.


• Jordan fell asleep, finally, after spewing out a whole bunch of annoying flem & mucous, but now it's time for her medicine and to feed her, and she's on her tummy (I am NOT risking waking her up to feed & medicate her at this point, she'll just have to wait)


• Scared to go on all these doctor visits hoping they can shed some light on medical mystery Jordan (and hoping the diagnosis isn't too catastrophic for what we can handle right now)


• Excited that the boys are pushing to finish up the basement walls, but fearing the zombie-like state I'll be in all day from my 3 hours of sleep last night

It's all about striking a balance. Some days it works, other days it doesn't.

Phrase Of The Day

"Grandpa, you're a busy body, and Avery is a chatterbox!" And she's right on both accounts. Grandpa Earl was all over the place today, painting the trim on the windows outside, smoothing walls in the basement for texturing tomorrow, pulling down moldings, filling cracks and holes in the drywall, and putting up paper & tape. Devon helped downstairs as time allowed, and is planning to get up early to do some last minute touch ups before the texturing. I feel bad that they're working like crazy to at least get the texturing done this weekend (much better with 2 sets of hands), but at the same time I'm pretty excited about picking colors & making that space more inviting & usable. It'll take awhile before we're painting, but getting to the point of texture completion is huge!




Earl complimented Devon on some of his drywall patches and repairs: "You have to be good at this when you own a house like this." So true! I guess that's the second phrase of the day.

Boy, when you're sick in this house, crazy things 'happen' -- like this outfit for breakfast.

Avery wasn't feeling up to snuff today, so she mostly lounged around on laps and sofas. This is very unusual behavior for her, and I know it sounds bad coming from her mother, but it's almost nice for her to be a little bit sick -- it takes the fire out of her just enough. That is as long as she's not barfing (she had a couple little ones in bed last night -- mostly into a bucket -- after the epic tummy dump into the toilet). Rumor has it that something 24-hour-ish is going around. Grandpa Earl was feeling a little under the weather, too, so he & Avery spent a good part of the day snuggling on the couch and watching Froggy Movie. I bet he knows his alphabet very well by now, almost as well as Avery I'd guess. No Children's Museum, maybe next trip.

And speaking of sick, Jordan & I spent 1.5 hours at the pediatrician's office today. She has some nasty post-nasal drip (that leads to unbearable flemmy coughing & an ear infection). It's not terrible, but they won't do the PET scan on her without sedation, and if she's having breathing difficulties in her lungs, we'll have to cancel our trip. Thankfully she's just fine -- it's all in her head (sinuses if you want to be technical about it). We'll go back on Monday for her final clearance for flying & oral sedation, as well as get lab work & blood pressure done. We finally got clearance from the insurance company to run the DNA sample for Prader-Willii Syndrome. It's not very likely, but we'll never know until we test.

The cats are being naughty as ever drinking from Dorothy's bowl constantly (all 3 right now). She's still hanging in there, though.

Sierra loves Jordan spots all over the house. Crazy-eyed Daisy. 2 different colors.

Friday Night Date

Amazing! Devon and I bolted out the door at the end of the day, and went to see Little Miss Sunshine (wonderfully funny) & have salads for dinner. We didn't plan to have salads for dinner, it just happened that we each ordered one when we got to the restaurant. I had Caesar, Devon waffled between the meatloaf sandwich and the Southwest Chicken Salad. They were big, so he missed out on the meatloaf.

It wasn't until after the movie that either of us acknowledged that we left grandma Linda & grandpa Earl without any instructions. We just left. I guess we both figured that by this time they could figure out what they needed to do with the girls, and I left my phone on vibrate just in case. But they never called, Avery was asleep by the time we got home, and Jordan was lounging as happily as could be in grandma Linda's lap -- as usual.

The two most special things of the night: Laughing at the movie and talking to each other one-on-one. It just doesn't seem to happen that often. Thanks grandpa Earl & grandma Linda.

Star Power

Since kids would rather be praised than punished, but rather be punished than ignored, I decided yesterday we needed to up the praising ante with Avery these days. So, out came a pack of 250 colored stars & a homemade poster. 10 stars & she gets a popsicle. She doesn't really 'get' delayed gratification yet, but she will soon. She can earn stars by doing things like getting in her carseat without a big episode, and doing things the first time she is asked to do them. The rules are pretty lose, and anyone can decide if she's earned a star for a particular action. By the time Devon and I got home from date night tonight we saw that she had earned her first 10 -- and consequently got her first popsicle for it (I think grandpa Earl was as excited about earning a popsicle as Avery was). Now that she's had one payoff we'll see how things click. I hope it works. It's just no fun constantly butting heads with a stubborn 2.5-year-old, and I'd much rather give stars for being good than time outs for being bad. It's easier on everyones nerves!

Welcome To The 2 Club, Sarah

Neighbor and friend Sarah celebrated her 2nd birthday on Monday, preceded by a party on Sunday.























Pre-food pumpkin drawing.

Photomania

Grandpa knows just how to untangle a fishing line, even if it is from Fisher Price.







Poor Avery, she's already started her med school training, and already has an astounding medical vocabulary.












Working away on the ol' place.

Sierra the protector (yeah, right!)

Avery "Pollock"












A new mealtime high for mommy, meat(?!) smeared all over Avery's face in an incredibly creepy game called "Boni face" -- daddy invented it. This is so wrong on so many levels. . . makes Devon and Avery love it all the more I think.

How to do arts & crafts when you don't feel well & are about to barf, but can't put the scissors and glue down.

Hmmmmm, maybe a baby Einstein, definitely not a baby Cousteau

Up Up And Away, And Back

It's been very different around here without Nana Noma (she's in Palmer, Alaska this week visiting aunt Jill). I think it was a bit of a mistake to take Avery with me to the airport on Sunday morning. She was DEVASTATED when Nana Noma left, and hysterical all the way home. She's been to the airport dozens of times, and points to every plane in the sky and says "there's daddy's airplane" (as though he has a private jet), but this time was different. She seemed to get it; Nana Noma was going away for awhile (1 week). She was a super crab on Sunday and on Monday, and when I took her to swim lessons on Monday night (which is one of her many Nana Noma activities), she was horrible. She grasped onto me with a full-body death grip, wouldn't participate (or even talk for that matter), and screamed bloody murder if I tried to peel her off me. She's a creature of habit, and not particularly comfortable with change, so we have to try to transition her into and out of things as much as possible. She was not ready to go cold turkey with no Nana Noma for a week.

I think it's a little comforting for Avery to see Nana Noma's car out in front of our house. We'll use it on Sunday to go pick her up, and Avery will definitely be coming with me to pick Nana Noma up. We need to close the circle on going away and coming back.

As for Nana Noma's "friends" -- in the daytime Daisy has taken over our bed (much to Sierra & Mojave's chagrin), and they've been hanging out downstairs mostly. Sierra is really got her nose out of joint because her favorite hiding spots are all disappearing -- the bar, the cupboards, on top of or underneath the hot water tank, and the living room is completely bare with no curtains to hide the window sill. Mojave is a little more flexible and willing to sleep on our bed, just as far away as possible from Daisy. Then they play "cat chess" all night, while we're trying to sleep. Hair-raising and hissing. Daisy seems to have taught Sierra & Mojave to only drink water from Dorothy's fish bowl. It's looking a little murky these days, but now all three cats are climbing up on the counter to drink there, and not from their bowls at all. Dorothy is still alive, amazingly. None of the cats seem particularly interested in eating her, just drinking her murky water. Bleck. It kinda reminds me of Avery drinking her bathwater, either in her water flutes, or as "bath soup" "bath tea" or whatever. Perhaps it's only surprising that she doesn't barf more frequently.

Only 3 more days until Nana Noma gets home!

Winding Down & Going & Going

I guess the most significant thing about this week has been weening myself from the pump. Almost done. I am hoping to pack away the pump this weekend, although I'll be packing extra shirts for Detroit. And I'm okay with this. It was hard at first, but as I've been pumping less and less I've been enjoying my extra free time more and more. Now I'm just going to have to do some research on how best to take breastmilk with me on a plane.

Other highlights of the week:

• Grandpa Earl has been working like crazy cleaning up the garage, the downstairs, and making runs to Goodwill. It's looking amazing.
• Grandma Linda has completely spoiled Jordan, who fusses now if she isn't being held. Luckily she gets to be held about 14 hours a day. When she's not holding Jordan she's cooking. She's made so many wonderful dinners (each day and to freeze) that now our freezers are all filled up and she has to stop!
• Both grandparents have been relishing in the daily grind -- feeding, playing, bathing, and decoding "Avery speak." Avery is quite the Jackson Pollock these days -- with paint and with glue (just Elmers, but boy is that fun to squeeze all over). Cutting shapes, gluing, painting, coloring, "writing," it's all about creating these days. And lots of pretending, too!! Maybe she has Devon's imagination & artistic talents (I sure hope so).
• Devon is busy managing the house projects during coffee breaks and into the night, and working his real job during the day. There are a gazillion things to do around this house Earl seems to have decided to do them all (I am not complaining, I'm just worried he's taken on too much). Hopefully he's not feeling any stress to get these projects done on a tight timetable, because we aren't. We've got the main living area of our house under control, so everything else they get done this week, or this month, or this year is just icing on the cake. Yippee. They're preparing (physically & mentally) for texture coating all of the entire downstairs walls on Saturday. . . . It could be a long day.
• I have been free as a bird this week -- relatively speaking. I've run so many errands all by myself it's bizarre. I'm disoriented. I wander through stores like a kid on her first trip to Disneyland. Then I feel the pangs of guilt: I should be home feeding Jordan, doing this, doing that. Earl & Linda must think I'm an absent parent with all the time I spend out and about when they're here. I feel bad for "abandoning" her with them, but when I return I always find them snuggling her and grinning, so I guess it's not as bad as I imagine. They seem happy being in charge of her, so I might as well let them do it and get some errands run by myself.
• Yesterday I bought a great new stroller for Jordan. It's very supportive and versatile. We had a great walk in it today. I also monkeyed around with our spare 3 car seats (and various attachments) to make one more secure for her to be in. She is still floppy as a noodle, but we don't want to spend $600 to $1200 on a carseat that essentially has lots of nice, soft, extra padding. I think I've bought everything I can find -- most of which I'll take back when I finally find the magic combination.
• I have been getting relatively good sleep for the last couple of nights and it makes a big difference during the days. Jordan's still on the sick list, but getting better for the most part. I really have to learn how to use her suction machine appropriately!
• I've had so much free time to do other things, and to sleep, that I'm days behind on e-mail, pics, blogging, and other household chores. OH WELL. I'll just count my blessings! There's always time to get caught up on those things. I have to take advantage of work release when I get it.

Speaking of sleep, I better start heading that way. We have a big outing planned for the Portland Children's Museum tomorrow morning.

The Grass Isn't Always Greener, But It Could Be

Mentally things have been pretty heavy the last couple of weeks, and are going to be pretty crazy over the next few weeks to come. Even with all of the help we've been getting, it's still pretty darn hard to manage this household & keep it all together. But, there's always something around the corner to remind you how good things are, relatively speaking. I went on a walk with a new friend today, and left feeling grateful that we found each other. We have so much in common with our children & their difficulties, and so few people to talk to who can even vaguely understand.

But the major thing I took away from our stroller* walk around the state park was how grateful I am for Avery. It's hard sometimes to have Avery around to compare Jordan against (Avery was crawling at nine months, Avery was sitting at six months, etc), but I never really appreciated that at least we have the chance to be "normal" parents, too. We get to enjoy Avery as she hits new milestones and does amazing things. To parents whose first child is a special needs child they are often robbed of the "normal" things that come along with parenting, and that in itself has to be mourned & survived. It's the loss of a dream, an imagination that built up in the parents' minds for at least 9 months, some for years. This mourning is normal for all of us, but I can imagine it can be even more difficult for people who meet these challenges right out of the starting gate. Or, possibly it's easier, because they don't know anything different and don't have another child to compare to.

So, who knows where the greenest grass is?

*Jordan's maiden voyage in the new stroller.

Milestones

HAPPY BIRTHDAY AUNT JILL!!

Welcome to the 30s club. We hope that you had a wonderful day.

For some odd reason, memorable events happen on Jill's birthday. For example, 8 years ago I signed my masters thesis, thereby completing my M.Sc. at the University of Alberta. Today we have a new milestone to mark -- Avery barfed ALL in the toilet!! Yippee! No mess to clean up for once. No loads of laundry. No more "barf-daddy" in the doctor's office.

Another day, another milestone.

Now, if we could only train Jordan like this (no kidding, she barfed on me we while I was writing this!).

Quotes Of The Day

When grandpa Earl asked Avery if she could say "Arizona" she replied: no, but I can say "donut!" Must be her Canadian genes talking!

Avery's also taking note of her emotions and feelings more. The other day she said: "Avery didn't get enough sleep" and then promptly put herself to bed at 7:15pm (alert the media, this is the kid we fight to get to sleep before midnight). Then today I asked why she didn't want to go to Childrens' Museum with grandma & grandpa, and she said that she was "too crabby today for the Childrens' Museum." Another funny thing was that last night when grandma spelled m-u-s-e-u-m, Avery immediately chimed in "I want to go t o the museum, I want to go to the museum."

A good part of my day was taking Jordan to the gastroenterologist. Things are going well from his end, and he only needs to see her 2 times a year, unless something changes with the stoma.

Okay, I'll try to do pics tomorrow -- but no promises.

Lullaby And Goodnight

What can I say, I've had to chose sleep over blogging the last few nights. I promise I'll be back soon. I miss my nightly brain dumps, and so much has been happening. I almost have pics ready to post, too. But, like my sleeping angels, I just gotta get some shut eye sometimes.

You'll have to wait yet another day to catch up on the Rowes In The Rose City soap opera. Thanks for tuning in.

No Wonder We Don't Get Enough Sleep

It was a busy busy weekend. I have a bunch of pics to post, but that might have to wait until tomorrow. I'm doing a little moonlighting for work, and need to get a few maps finalized tonight so I can send them off before Monday morning.


Grandma Linda & Grandpa Earl came on Friday night. They're here for a week while Nana Noma is in Palmer, Alaska visiting Jill. Avery is beside herself with excitement, since both Daisy (the cat) and Dorothy (the goldfish) are here for the week. Sierra & Mojave are not so happy about it, but I'm sure they'll be friends soon.

Devon & Grandpa Earl are going gangbusters with cleaning and organizing & fixing up. Grandma Linda has been doing lots of Jordan holding, and treating us to gourmet dinners every night. And Nana Noma left us with about enough fresh veggies from her garden to feed 47 people. Delicious. I wish she could grow beans, tomatoes, peas, & cucumbers like those all year 'round. It's easy to forget how delicious non-supermarket produce can be!

Jordan is smiling up a storm these days, even "laughing" sometimes. She makes this adorable noise right before & sometimes during her smiles. It's nice, and we're all very pavlovian these days, instantly turning to meet her grin when she sounds the "smiling bell."

Avery is unbelievable busy. This weekend she helped me with lots of my errands, began a fascination with glue, and decided everyone needs pipecleaner bracelets on their arms and legs, all the time. Boy is she exhausting. She and I also helped our neighbor Sarah celebrate her 2nd birthday today. Happy Birthday Sarah.

Updates: I finally got Jordan's file & pictures mailed off to the NIH yesterday. I wonder how long it will take them to review it and decided if we need to take Jordan out for a consult. I also wonder just how many pictures they needed of an 8-month-old. I sent 19 (in a nice little electronic package, with a print out & details about each one). I bet they'll find one or two they can use.

And with the dairy business: I'm down to 10 minutes (4 times per day) of pumping. Still getting gallons of milk, but I plan to have the pump all packed away by the weekend. I just hope I won't have to fight leakiness the following week in Detroit (but I will be pcking lots of extra clothes anyway).

So, hopefully we'll be hearing the updates about Nana Noma's trip to the great north this week on Jill's blog Northern Exposure. (No pressure Jill, ha! You gotta keep us informed!)

Okay, pictures to come later (Monday?).

Unfortunate Closing Thoughts

Do you ever wonder why people go out of their way to be insensitive? I just read Jordan's entire 141-page medical file and found nothing medically surprising. We'd heard it all before, and even though there were many sad things to read, nothing shocking.

At the bottom of each consult dictation is a closing to the affect of: "Thank you for allowing me to participate in the care of this child." One doctor said "Thank you for allowing me to participate in this young lady's care." I thought that was sweet -- Jordan as a young lady, rather than just a patient or just another appointment.

But one closing struck me, and makes me laugh (so I won't cry) & makes me furious at the same time. "Thank you for allowing me to participate in the care of this unfortunate little girl." Yep, that's what she wrote at the end of 2 of her dictations. WHY? What purpose does that serve. Not to my surprise it was the doctor we have had a history of disliking, and were able to ditch in favor of a much much much better (behaved) pediatric neurologist. And, from what I've heard from a number of other parents, this is standard MO for the beast. I'm guessing that she simply has no filter for unnecessary cruelty, and we all know that she's a terrible pediatric neurologist as well.

Boy will the other mothers (who can't stand her) understand my fury when they hear this. I did write a scathing letter to her, but I'm sure I'll never send it. There's clearly no point. She really has no idea what's acceptable and what isn't. At least I got it off my chest.

PET

After Sesame Street yesterday, Avery told me she wants a dog. Mommy has wanted a dog for years, but apparently I'm not ready for that kind of responsibility, yet. At the bare minimum we need a fence first. . . .

But, actually, that's a whole different story. The PET I was going to talk about here is Jordan's PET Scan in Detroit on the 4th.

PET stands for Positron Emission Tomography. It's a technology that combines the fields of medicine, computer science, chemistry, physics, and physiology to study the function of organs such as the heart, brain, and bone. In PET, a very small quantity of substances (trace) which are used by the body, such as sugar, are made radioactive and administered into your blood stream. Highly sensitive PET scanners detect the location of the radioactive tracers, allowing the physician to identify normal and abnormal function. [The radiotracers remain in the body for only short periods of time and have no known side effects.]

Hopefully this procedure will give us an idea of what parts of her brain are functioning. We know from x-rays and MRIs what parts are there, and what condition they are in (good, except minor cerebral atrophy -- no tumors, deformities, or missing parts). It's the logical next step.

Flying South For The . . . Doctors

Well, it's been another miracle of coordination, but we've finally managed to get Jordan in the door at UCLA. In case you've never called the UCLA Pediatric Neurology Department, it takes an act of god to talk to a person there (or, as in our case, an intervention from another neurologist we know at UCLA, thank goodness).

Since we have appointments at the Children's Hospital of Michigan at the beginning of October, and the Neurogenetic Clinic at OHSU on the 16th, UCLA initially planned for us to have an outpatient consultation with the doctor, that would last ~1.5 hours, in late November. They figured that with all we've been through, and with all we're going to go through in the next couple of weeks, there'd be nothing left for them to do but review her records and have a look. WRONG! After trudging through her 141-page (high-graded) file, they called back today to have her come as an inpatient for three days, and the whole team (5 docs) will be consulting on her case. The list of tests is already being drawn up.

It's a strange feeling, having all of these doctors appointments. On one hand I'm thrilled that they are so interested in her and helping us find a diagnosis for her. On the other hand, the fact that these world famous docs are taking such an immediate interest in her is a little bit scary. Part of me wishes that they would review her records and say "Oh, she's fine, just a litte behind, nothing to worry about, you don't need us." But, over and over again they squeeze her into their schedules as quickly as possible, for which we are truly thankful.

Now, on to the next big task: Compiling her records & photos to send to the National Institutes of Health for the genetics review. This one is kinda scarey, too. I keep putting it off because I tell myself that I need to send a recent photo, and I don't have one more recent than July, so then I need to get my pics uploaded and ordered. I guess I'm just thinking of excuses to not do this, even though I really want to. But don't want to. But do want to know what is "wrong" with Jordan. But don't want to know what is "wrong" with Jordan. It's a double-edged sword for sure, but in the lonnnngggggg run we all agree that it really is better to know, even if its bad. It's not like any of us couldn't be hit by a bus tomorrow. . .

Avery-isms

Updated. . . .

Here are some of my favorite phrases and sayings these days.

• "Candada"
• "mecinine"
• "30-and-a-half" (the answer to ALL numerical questions: how big, how long, how tall, even what's you blood pressure, etc.)
• "Awery's not a tattletale, she's a chatterbox!" (and she is)
• "Daisy is a wild child!"
• "You're my best friend, and daddy's chopped lizard!"
• "You're welpum"
• "It means in Spanish" (as a reply to anything nonsensical that she says.)
• "Te Amo Crocodile" (a combo of Te Amo Mucho & After Awhile Crocodile)
• "Awery's such a bi' girw"
• "You didn't shave, daddy. Go shave right now!"
• "I juss 'retending."
• "That sounds like a great idea."
• "Too noise!"
• "It's okay, it will dry."

Wired! & Tired

Yes, this is Devon's office. I agreed to do a little work for Landau, so Terry dropped off my work laptop and I got it set up downstairs with the others. Now that's multi-typing, oops, I mean multi-tasking. [It's really only 3 computers, and five screens, since two computers are hooked up to two screens each.]

1,2,3,4,5 screens, for 4 eyes

Jordan was sleepy & pathetic today. She was still hooked up to the Pedialyte pump, and slept the day away while fighting off a fever. All that quiet gave me some free time to spend 3 hours on the phone back & forth with the insurance company & the hospital. It was worth almost $500 to get things straightened out, but since, in the end, both knew what each other wanted and needed, it seemed a little stupid for me to be the middle man in the deal. I was just mad because we were overcharged (and consequently overpaid) $275 in April, and the hospital FINALLY got that sorted out. Just when they were going to refund our money, the insurance company & the hospital got into a dispute about a different bill, so instead of FINALLY refunding the $275, they just diverted it to this current bill. Did I mention that we maxed out our insurance for Jordan in early May, so we are not supposed to pay anything for the rest of the year. Ugggggg. Now I've vented. . . .

Well, as luck would have it, Jordan was up most of the night, slept most of the day, and seems to be perking right up. . . . Seriously, I have got to get to bed early and sleep tonight (if I've said it once I've said it a million times.)

L-l-l-l-lola

Check out the kitten who walks on her two front paws. (a genetic defect made her back legs too long, so she learned to walk on the front ones!)

LOLA

Catching On & Catching Up

Yeah Julie, Jeff, Jack, & Jasper. We can't wait to add your blog to the daily routine! Welcome!

News From The Top Of The World

Picture Perfect

Avery's first French Braid. Of course the whole time I was trying to get her to sit still for this, she was telling me about how she likes French Fries. Whatever.

Our little monkey.











What more can we say!





We found a new playgroup up the street. It's at the place she was going to go to preschool (that they cancelled in early August).













One of my favorite fall outfits! I was so excited for Jordan to fit this already. It made me excited for the annual pumpkin patch. We better get a sunny day, the pending El Nino better not rain us out!

One of Avery's favorite new passtimes -- cutting paper. Nana Noma divised this system in an effort to keep the confetti contained. It works occasionally, but sometimes she does all her cutting in the box, then dumps it out when she gets out. It's proved to be a good lesson in cleaning up after yourself.

Avery took this one, and I liked it!