Three's A Charm, Too

HAPPY BIRTHDAY BEST FRIEND KATE!

Welcome to the 3-year-old club

Wouldn't you know it, I've been trying to squeeze in a trip to the Children's Museum with Avery ever since the holidays were over, but Jordan's (and sometimes Avery's) illnesses kept getting in the way. So, once again, this time for Kate's birthday, there we sat in the hospital. But, the stars were aligned, and Jordan & I made it home just in time to trade off kids with nana Noma, and head back down to Portland (for the 3rd time before 1:00pm).

Wow, can 3-year-olds play. I think they hit every single activity there, although some areas were, as usual, more interesting than others.

Tonight as Avery & I were recapping the days activities, I had an idea: The museum for the kids, and a big ol' nap room for the moms?

I'll try to post some pics tomorrow -- now it's time to try to stay awake for Law & Order, CI & SVU (it's almost a bummer to double them up on one day).

Third Time's A Charm

Yeah, we dodged a bullet today! At about 4:00am Devon finally left the room to sleep in the guest room, and I took over Jordan miserable, hacking, barfing, sneezing, eyewatering, agony duty. By 05:15 I was all packed (for 4 days, with books & my computer), and headed to the hospital.

But, after 3 hours (and about 7 minutes total face time, but that's a whole different story), Jordan & I got to come home. She has a left ear infection, not too bad, an upper respiratory infection, and pneumonia, which could possibly be aspirated mucuous, but because of the other infections were going to treat it like pneumonia, just to be safe (and by default). She also got a Rocefin shot, and then they sent us home. She had some low grade fevers over the last couple of days, and obviously a horrible cough, but when hooked up to the pulse-ox, it showed that she was getting plenty of oxygen. YEAH! This, and this alone kept us out of the hospital, because if she can get enough oxygen on her own, we can take care of the rest.

A mid-morning follow-with our regular pediatrician brought at least one good change, too. A switch from Zantac to Prevasid (or Prilosec, whichever the insurance will cover), should finally take the reflux variable out of the equation. I've asked the gastroenterologist 3 times to change it, but he wouldn't, and basically ignored my concerns about reflux playing a bigger role in her barfing. But, he didn't think it was an issue. Thank goodness our topnotch pediatrician is on top of things (her idea to switch, not mine)!

Man, it's brutal, as soon as we get all ironed out from one trip to the hospital, the next one falls in line. Luckily the stays are getting shorter & shorter. But somehow, it always seems to mess up my most recently established "good" sleeping pattern, this time included.

The 10-Day Cycle?

Enough already! I'm just DONE with the cold/flu/RSV season, so if you're sick, get over it and get rid of it so we can move into spring all happy & healthy.

It's been 10 days since Jordan was last released from the "Hotel Emanuel" -- and of course as the sun went down yesterday, Jordan's mucousy never-ending cough reappeared. It was 10 between our previous hospitalizations, also -- so I'm beginning to see a pattern here. . . .

Cross your fingers that we don't end up there again. So far it's just a cough, but that's how it started out last time, and the time before. This time, however, no one else is coming down with anything; Avery has not been the harbinger of illness to come. So, since the pattern is broken, maybe this will pass without another hospital stay.

She coughed every ~10 to ~20 seconds from 8:00am until 2:00pm (and she fell asleep from 1:00pm). Her body and my psyche finally got a break from 2:00pm until 4:30pm, then it was back to cough festival. For the most part it's been wet & messy, but as the night dragged on, it started to sound drier & hoarser, more and more like a seal bark (croup). At least she finally fell asleep around 10:30pm, so we're crossing our fingers for a restful night.

Boy were we glad tonight, when she barfed all over the floor, that we reverted to the original hardwood. . . . It's a pain to shampoo carpet, and pretty hard to throw the sofa in the laundry [like the piles and piles of blankets, towels, and clothes I already do daily, largely due to her barfing, coughing, and spitting up], so if nothing is nearby to barf in or on, we just tilt her over the floor and then go get a bath towel/rag.

Stiped Shirt 'Sisters'

What a great day we had today -- just playing. Kate came over, and the girls didn't sit still for more than a moment, except during lunch & 3:00 o'clock snack time. Play Doh, dolls, chase, tag, jumping, sliding, bike riding, reading books, making "hot cookies," building long sticks from marbletrack pieces (I had to make the actual racetrack), memory game, it just went on and on. The cookies were just perfect for snack time, so I finally got them to sit down & watch Madagascar then, too. (Kate brought it with her, we've never seen it. Very cute.)

Makin' "hot cookies" -- luckily they cooled in time for 3:00 o'clock snack time.

Showing off their flower sandwiches (PB&J). They both had a fit when they saw me put the bread in the microwave (to defrost it -- it had been in the freezer), and started screaming "don't cook it, don't cook it." They both had to feel the defrosted bread before I was allowed to continue on with my sandwich artistry (okay, it's a gigantic cookie cutter).

One thing that's definitely true about older kids is that 2 is easier than 1 (at least with us). Kate & Avery are playing together so well these days, even when there is a scuffle they can usually work it out for themselves (phew). Usually. But it's such a joy to see them playing and talking and interacting like two little kids.

Bike races on the deck (we had about 7 different rounds of this, between rain showers). They'd ride down and back, then get to the end and yell "trade," jump off, and each get on the other bike -- up to 20 times in a row. Hilareous. Kate always wanted to win ("I win, I win"), but neither of them seemed to know what the criteria for winning actually were.

Meanwhile, Jordan was quarantined due to a constant (and I mean constant) mucousy cough. She coughed every few seconds from 8:00am until 2:00pm, when, despite a dose of Benadryl at 10:00am, she finally fell asleep. I think she was actually sleeping around 1:00pm, but the she was still coughing for about an hour after that. I hope we don't end up in the hospital, again . . . . Seriously, NO MORE COLD/FLU/RSV SEASON!

And on a final note: WHAT IS WITH THE WEATHER?!?!?! Today we had sun, clouds, rain, hail, & SNOW (AT ~8:00pm)!! No wonder we're all sick all the time.

That pokey, miserable tree -- transformed (at the hand of Devon & his new hack saw).

Keeping Busy

We certainly kept ourselves busy this weekend. I started off on Saturday morning with errands at 7 stores, and was back home in 1hour 28minutes -- all done. Then we went to nana Noma's to help her out with some of the tougher yard work she needed done: pick up the last of the soggy wet leaves, rototill the garden, and put up the pea fence, all in the soaking rain (okay I admit, Devon did all the outside work at her house).

And after such a speedy start to the weekend, we got to do all kinds of household projects at our home while Avery had a Saturday night sleep-over at nana Noma's. Devon primed the ceiling downstairs for painting, installed all new light fixtures, installed new shelving in the mudroom, and limbed the tree we were considering cutting down to create our new grassy, enclosed area to the side of the house. Although I was on Jordan duty most of the time, I helped out when possible, including getting a bunch of stuff moved out to the duck barn and/or ready to go to Goodwill. We're definitely into "spring cleaning" mode, even though spring definitely isn't here yet. (Actually, the bug hit me a couple of weekends ago, but I swear, by the time we get all this stuff done it'll be time to start over.) We also watched 2 movies on Saturday night -- amazing (The Last Kiss -- LOVE Zach Braff!, and Kiss Kiss Bang Bang -- despite all, still love Robert Downey Jr, too -- who doesn't?).

Unlike this weekend, I often get to the end of the day and wonder "Where has the day gone, I don't feel like I've done a thing." Then I realize that just keeping Jordan going is a full time job, but there's not much to show for it. For example, her feeding, medicine, and dietary supplement schedule would put any administrative assistant to the test for memory, organization, and scheduling. I've had a few different systems over the last year, and now I'm on to my new one. I sit down for ~15 each night and measure out everything for the next day. This helps to make sure no one gives her a dose twice, and no one has to remembr to write it all down. If it's not there, she's had it. If it is there, she needs it.

0600: Zantac
0800: Tranxene, Flowvent, Formula with Miralax added
1200: Formula with protein powder added
1400: Zantac, zinc chloride, poly-vi-flor vitamin
1600: Formula with Tribasic (calcium phosphate supplement) added
2000: Formula, Tranxene, Flowvent
2200: Zantac
2300: Formula for overnight slow feed, with protein powder added

On other fronts, Devon has been working with Jordan over the last few days to start bottle feeding again. So far he's had great luck! On Friday night she drank an ounce of water, and on Saturday night she drank a half of an ounce. Okay, okay, reading that it's not very impressive, but if you could see how orally defensive she is (she gags over anything that gets near her mouth usually), you'd know this is big stuff. She hasn't drank from a bottle since March -- almost a year. She won't even suck on my thumb any more, but recently she's been getting better at letting me rub her gums, and she even tries to chew on my finger a bit when we do this (which hurts if it's lined up with her 4 teeth!).

In terms of mobility, we're about to get some equipment to help us out. On Wednesday she's getting a "stander" that will help her stand up for part of the day and allow her spine to stretch & straighten. I haven't seen it yet, we're getting it on loan from from our early intervention program (PRIDE), but looking at the pics on the web, I think its going to be big. And next Monday (not tomorrow), she's getting fitted (by 2 physical therapists) for a KidKart, also on loan from PRIDE. Again, I haven't seen it, but I've heard that there's a wheelchair base, and a smaller indoor base, so we'll just have to wait and see how all this equipment fits in this house. [PRIDE is able to "recycle" a lot of equipment as kids grow out of things, and considering the cost of this equipment, it's a godsend to almost everyone -- with or without insurance].

On a totally different note, I can't recommend enough Strange Piece of Paradise by Terri Jentz. It's her story of discovering the truth about her attempted murder in 1977 near Bend/Redmond, Oregon. It's not a quick, easy read, but it's worth it (whether or not you're familiar with central Oregon).

After dumping herself on her bum, Avery helped Devon with the annual 'scrubbing of the deck'. You can't see it, but it gets slippery with virtually invisible moss/algae.

New shelves in the mudroom. Play clay: that's what Avery calls modelling clay. We were playing with it on Friday night, and realized why Play Doh is so popular (it's soooooo soft in comparison to the clay). If you were wondering, I made the flower, and Avery made the toothpick bug that was attacking the flower. I'm not sure what the yellowish ball on the leaf is supposed to be, but Avery insisted it be there. Jordan joined right in, squeezing the blue clay into a worm (or snake, depending on what mood Avery's in).

A rare pose from Avery on Friday night (this time she actually asked to be photographed, and sat down to pose for it).

There's A Hole In The Middle Of -- My Kid

Just in case you're faint-hearted, this is your warning.

Every 3 months or so, Jordan's Mic-Key button needs to be replaced. So, I did it tonight, and of course, now that I'm not queasy about it, photodocumented it.

1. Extract water (5 ml) from the "bulb"
2. Pull out button
3. Insert new button
4. Insert water (5 ml) into the "bulb"

Easy as pie.

Now, for the gorier parts:

All the supplies (new Mic-Key, empty syringe for extracting the water from the balloon of the old Mic-Key, syringe with 5 cc water to put into the new Mic-Key balloon)

Extract the water from the old button, and pull it outSadly, her stoma has a lot of granulation tissue, we are working hard to get it cleared up!

The old button, deflatedThe old button, inflated (the balloon holds it in place in the stomach)Inserting the new button into the stoma (with some surgi-lube)Filling up the balloon on the new button -- all done!

Rowe Rodeo

Get me outta here or I'll pounce!!!

It's all relative. Sierra & Mojave are normally terrified of Avery, but there's one person in the world they dislike even more: THE VET!! They only leave the house once a year, but boy is it a production. Off to the vet every February for a yearly checkup and booster shots.


As all cats do, they have their quirks. Unlike many cats, though, when these two pea-heads are scared, they freeze and try to flatten themselves out of existance. It's odd, but preferable to turning into shredding machines.


Avery was a big helper today -- after the rodeo (i.e. catching the cats and getting them into the travel carrier). I think they actually "enjoyed" her comfort, as much as they could enjoy anything at that point. And Avery loved to watch yet another doctor hard at work keeping our family well. I suggested that she could be a kitty doctor when she grows up, but she is still planning on being a baby doctor instead, so she can help babies like Jordan when she grows up.

Right On Target

Here was our laugh for Saturday evening. I wonder how many times I've walked past this and never noticed it (considering it was on the door at a nearby Target)?

Frustration & Procrastination

It's been a couple of weeks since our last round of intense medical issues started. First was the 8-day stay in the hospital for RSV, interwoven with a 48-hour video EEG*. It's somewhat common knowledge that EEGs should not be preformed during illnesses, because being sick and/or febrile can drastically lower a person's seizure threshhold, and they are not really representative. In addition, Jordan was definitely not herself during those 48 hours, and I don't believe that we caught any of the activities I was worried about. Believe me, I was confused as to why we continued on with the previously schedule EEG.

A week later we received a call from her pediatric neurologist, saying that, once again, her EEG is basically a dog's breakfast, and combined with all the movement artifacts from the horrific coughing, it was very difficult to make sense of the results. In short: she is possibly having mild seizures, and maybe we should be medicating them. He was going on vacation for 10 days, and we are going to meet when he gets back (should be sometime in the next week or so) to make a game plan for moving forward.

After much thought, and guidance from friends on an internet group for childhood seizures, I've decided to insist on a new EEG once she's healthy again. Then, to add insult to injury, during our last trip to the hospital, I found out from the attending doctor that both she & the ped neuro were against the EEG while she was sick, but she had it nonetheless -- no one knows why. Talk about frustrating! Oh well, it was annoying, but it didn't make or break the hospital stay, and was responsible for getting us moved into a single room in the School Age ward of the hospital**.

As for procrastination, I'm having a terrible time doing any research on the variant Retts Syndrome (CDKL5) that Jordan will be tested for soon (we had to reschedule the blooddraw last week -- she was in the wrong hospital). From the first few papers I've read she fits the description to a tee. But even though there are more medical articles, research studies, support groups, and even other families all available to us, I just can't seem to get motivated to connect with any of these people or information. I just cannot believe that her test will come back positive -- since all the other hundreds+ tests have come back negative. I guess I don't want to get my hopes up by being prepared for a positive result.

And yes, I do want a positive result. It took me awhile to decide that, but in fact, I think a positive result would be a huge relief -- even though it would not change her prognosis, and there are no "cures." We still wouldn't reasonably be able to predict what the future will hold for her, but at least we'll have a name and a sense of understanding. We'll also be able to find out if this is something that Devon and I are recessive carriers of, or, if, as in the vast majority of cases, it was a random genetic mutation.

Either way, it's been a long 3 weeks, and we still have a long road ahead of us over the next couple of months.

*Note: Do not mock your neurologist, or change your clothes with the bathroom door open. Not only will it be recorded for all eternity, but it's broadcast to the entire floor from the nurses station (yes, pointing out into the aisle). Hey, where's the HIPPA for mom?!?!?

**Of the 11 days we were in the hospital in the last 3 weeks, we only had to share a room for one night -- the night she was first admitted, and we didn't even get into that room until 3:00am. It certainly pays to get to know the nurses, residents, & attendings. . . .

Speeding Up

Here it is Monday night, and I'm still spinning & swamped. I think I finally let my sickness catch up with me on Saturday, and ended up sleeping most of the day away -- Sunday too. I guess that's what happens when you get to be so old -- 35!!!! Just what I need, time speeding up due to aging.


After sleeping for the better part of 2 days, I'm starting to feel a bit better, but still feeling swamped with "things to do." It's very frustrating, since I have a number of projects almost done, but haven't managed to finish any of them, thanks to all the hospital days.

Jordan, Avery, & I are still somewhat sick, but definitely on the rebound. Devon mostly dodged it this time, thank goodness! I've even caught a couple of smiles from Jordan over the last couple of days, between brutal coughing episodes.


Here are some pics from the last few days -- a picture is worth a thousand words, right?

Avery made sure to tuck her valentine's bear into Jordan's bag as we headed down to the ER. Here she is resting and snuggling with sister's bear, waiting for our room upstairs.

The wagon train home.

Hey, can I get one of these for home -- this is fun!

The welcome home laundry pile -- it was only 4 loads in the end (and I admit that probably 1 or 2 loads came home with us from the hospital). I keep hoping if I use the stairway as a laundry shoot for long enough we'll figure out how to put a real one in someday. . . .

Something we haven't had to deal with in awhile -- shadows on our pictures.

Avery thinks she's in heaven with a spoon that size.

Avery wasn't even sure they made 35 candles, so we didn't count, she just grabbed a handful (thanks).

Ahhhh, now this is more like the weather we're used to in February -- wet, but not too cold.

Scoot scoot. All these hills make this a tough neighborhood for wheeled activities. It's a pretty short driveway, but for now it'll do.