The Rowes in the Rose City

Bye Bye Grandpa Grandpa

2009-02-01T22:18:00.001-08:00

After catching pneumonia in late December, and having a few other health issues to follow, my grandpa John Driver died early this morning. He would have been 84 years old on 12 Feb. He had a happy & healthy life right up to the end, but that doesn't mean that we aren't devastated at his loss. He was a husband to Martha for 53 years, father to Gary & Linda, grandfather to Leslie, Jill, Amanda, Jennifer, Michael, Jon Paul, Stephen, & Jessica. He was grandpa-grandpa to Avery, Jordan, Brayden, and Birkeley John, whom he didn't have the privilege of meeting in these past 5 weeks. He was a friend to hundreds.

We Love You & Miss You

Randomness

2009-01-28T04:28:00.000-08:00

Birke is really setting the tone of the household lately, and if I had to pick a theme, it would be "random." Although he's clearly a good eater (as told by his weight gain), he's definitely a free-spirited snacker who will not get onto any type of schedule. And let me tell you, if I can't get him onto a schedule, no one can. So, we're having a bit of a power struggle, and he's winning. We do what he wants, when he wants to, and chaos abounds. As a nursing mom this is a little difficult for me to accept, but what choice do I have? And if it weren't for nursing, I wouldn't care in the least. Only my milk supply cares -- it's a bit confused.

This is the blog that reflects our theme. So many things have been happening lately I can't seem to stay caught up and on top of them all.

Birke in a messy, milk drunk state a couple of weeks ago

One of Birke's common snooze positions, all curled up in the Boppy
He sleeps well in the swing, too, although he doesn't sit well in it. . . .
Wait a minute, that's not Birke -- scat Sierra!
that's more like it
Jordan finally got her new wheelchair a month ago. From the first evaluation, through finding the right chair & components, insurance & Medicaid approvals, and ordering & shipping, it took 13 months.

Jordan also got a TLSO (thorasic lumbar sacral orthotic) in December. It won't correct or even prevent her scoliosis (which is pretty bad already), but it does give her body support & allows her to work on her head control. The problem is, she HATES it. So far we're still "stuck" at about 30 minutes per day, and she fusses & fusses the whole time. Oh well, hopefully it will get better with time, as it really helps her body. It also makes her a full 2 inches taller, so we have to adjust her headrest on her wheelchair each time she's in it.

It even gives her support to sit up without her wheelchair

Night time is snuggle time, and most nights Devon & I unwind from the day by watching a little TV & taking turns snuggling with Jordan & Birke (Avery is in bed by this time). Sometimes we get a little stacked up. . . . Hey, I'm hungrythis cheek is givin' me nothing!Avery thought it was a riot to ride in Jordan's car seat the other day (it goes to 105 pounds!)

Our neighbors were up early on Sunday to make these snowmen before it all melted by the afternoon. There were actually 4 of them, but one of them had already fallen down (on the left) by mid-morning, and I didn't get a photo of itAvery got Aquasaurs for Christmas from our friends the Woods. The package said there were 50 eggs, about 5 of them hatched, but we're down to 2 that are alive & thriving. They're kinda creepy, and I'm not sure the kitchen counter is the right place for them, but we all love watching them.

1 Month Old

2009-01-28T00:47:00.000-08:00

Birkeley turned 1 month old today. I wanted to take some pictures in the sunlight, but since we didn't have any sunlight (in fact, I woke up to ~2 inches of snow, but it melted away by mid-afternoon), I had to settle for OMSI light (while the girls were off playing, see below).

It's been a wonderful, tiring month. The tiring is obvious -- "Newborn Fog" as my friend Kelly calls it. But the wonderful is rejuvenating. It's totally worth the exhaustion and juggling. It's such a relief to have a healthy baby that does things he's supposed to do. After a week or two I completely quit worrying that he might have neurological problems like Jordan, and now I just bask in the positive energy his existence has brought to the house. He's so strong & expressive, and growing like a bad weed (I weighed him on our scales tonight and he was 9.8 pounds -- making me wonder if our scales are right!). We're so lucky to have him!

Mostly Birke just slept, slept, slept through the whole OMSI experience.

I did get a few with his eyes open, and some funny faces, too.

An OMSI Date With Kate

2009-01-28T00:36:00.000-08:00

We needed a day out of the house, so off to OMSI for the afternoon.

Birke had to come along too -- he was ecstatic Learning something science-y

The puppet show

Birke's Birth Announcement

2009-01-28T00:30:00.000-08:00

Baby Birkeley Shower

2009-01-27T23:58:00.001-08:00

Birke & I stopped in at Landau on Monday for a visit & were treated to a surprise baby shower. Cheryl went all out on decorations & dessert -- aren't they cute?!

These bags were all full of the sweetest baby boy clothes!

Yes, you can see the tiredness in my bloodshot eyes

YUM! Dessert from Saint Cupcake. The frosting was to die for -- seriously, better than you can believe. Everybody took at least one turn holding Birke -- except Jake who is too scared of breaking babies to hold them! Birkeley slept through it ALL!

Heidi & Birke
Cheryl & Birke

Andrea & Birke
Jessica & Birke

4 Weeks Old

2009-01-25T21:57:00.000-08:00

Where does the time go? Birke was 4 weeks old yesterday, and I can hardly believe it. Here are some pictures taken by Kelly Wood on Tuesday. THANKS KELLY!

Tiny hands

Tiny feet

Even Kelly's daughter (Avery's BFF) Kate calls Birkeley "baby brother"

A More Mellow Saturday For Jordan

2009-01-24T16:55:00.000-08:00

Jordan made it home today around 1:30pm, with a discharge diagnosis of "neurometabolic event of unknown etiology." Typical Jordan, always a mystery. It seems that the shaking might have been related to the high fever she spiked while she was in the ambulance -- her fevers come on fast! Once she was stable at the hospital she was back to normal & they didn't know exactly what to do with her. So they discharged her, and we've been watching her temps very closely. So far she's been fine all afternoon. No source for the fever was ever identified.

The neurologist came in to see her today before she was discharged. He also decided her shaking was fever related & not due to a seizure. We've seen the chin quivering before a fever before, but never this dramatic. Sometimes Jordan just throws us for a loop!

The "Fun" Never Ends

2009-01-24T04:01:00.000-08:00

Wow, do we know how to have fun on a Friday night, or what!? Jordan had a strange episode this evening, strange enough that I called 911 rather than letting Devon drive her to the hospital himself.

She was acting a little "off" during the late evening, then around 9:40pm she started shaking all over, with a very pronounced chin quiver. It was as though she was shivering very strongly. She didn't seem to be "out of it," like during a seizure, but since we really didn't know what was going on, we treated it like it was a seizure.

When the ambulance got here her heart rate was very low (45-60ish), but her temp was normal. They started oxygen immediately, so I don't know how her oxygen saturations were. By the time they got to the local hospital she had a fever of 102'F, which is usually what happens when I see her chin quivering. Her heart rate there was 170+, so I'm not sure if the paramedics equipment was working properly, or if her heart rate was just all over the place. Devon said the paramedics didn't mention it to the docs that it had been so low.

They were in a hurry to get some seizure rescue medicine in her, and couldn't get an IV started, so they did an IO (intraosseous) in her leg instead. Devon said she didn't even flinch when they drilled into her leg. I was glad I wasn't there to see that. She had quite a cocktail of drugs, including Versed, and the shaking stopped.

Soon after that they transfered her from the local hospital down to Emanuel Children's Hospital in Portland. Her own pediatrician is attending this weekend on the floor, so that was nice. Once they can stabilize her vitals & (possibly) determine the source of the fever, they will send her home. There's not too much they can do for her, and knowing now that she did spike a fever, I am less convinced that she was actually having a seizure. Just a perfectly normal "Jordan fever," with the shaking to warn us it was coming.

A Sunny Day

2009-01-20T22:23:00.000-08:00

This crazy weather! It's been like spring for the last few days, and yesterday we got out to enjoy the rays. Avery had lots to do, like pogo sticking, hoola hooping, skate boarding, and bike riding.
Avery wanted to take some photos with my camera. She held it right up to her eye & click, click, clicked like she was a photographer at a shoot. Thank goodness we didn't have to pay to have the pics developed, as she took close to 200 photos in a matter of minutes. These are her shots.

When she let me have the camera back she was in a great mood & had one of her best smiles ever.
Birke was getting a little hungry. . . .
So Devon took him to calm him down
Hey, what happened to my mommy milk? This tastes like boogers! Bleck! MOM!!!

School Days

2009-01-20T21:56:00.001-08:00

It's been a long time coming, but the day has finally come. Jordan went to pre-school today for the first time. Devon and I went to our first meeting about this in March, and since then there has been a lot of planning. Yesterday I said to Avery "can you believe Jordan is going to school tomorrow?" and she said "well, yah, you and dad have been talking about it for, like, a year or something." Well, we still can hardly believe it, but it happened.

So, what is pre-school like for Jordan? The bus comes and picks her up at the house (with her nurse, who rides the bus with her), then at school they sing songs, study letters, have snacks & playtime, and do therapies (physical, occupational, speech). Jordan is in Classroom 5, and her classmates are 7 boys -- no girls except her. School lasts for 2.5 hours, 4 days per week. Hopefully she'll stay healthy enough to be able to attend full time (you know how those schools are full of germs & sickness).

Snuggles With Birke

2009-01-18T23:09:00.001-08:00

Birke doesn't "do" too much, yet, but he does snuggle well!

Helping dad with his geostatistics reading

Jordan is a great snuggler, too!

"Doublating" on the nap

Helping Avery snuggle in for bed

snuggles with Grandma Linda

Scooby Chia

2009-01-18T22:47:00.001-08:00

Avery loves Scooby Doo & projects, so she got this one for Christmas from Devon & I. I've never grown a Chia before, and it certainly didn't turn out like the lush head of "hair" shown on the box, but Avery loves it anyway.

Day 3

Day 5

Day 7

Day 17 -- and it doesn't seem to be growing any more

Birke's First Bath

2009-01-18T22:20:00.000-08:00

Almost 3 weeks old, and Birke finally had his first bath on Thursday evening. His cord "broke off" before it was supposed to, so we had to wait until it was mostly healed before we could bathe him. He seemed to enjoy it at the beginning, but wasn't too happy towards the end. I hope he likes his baths more than Avery did, she screamed worse at bath time than for shots at the doctor's office for years!

Meanwhile, Back At The Ranch

2009-01-14T22:44:00.000-08:00

Jordan is home from the hospital as of yesterday! 8 days in the PICU, then discharged home (no time on the regular floor, thankfully). She's on the mend, and almost back to normal. We're just glad to be all back together. We're hoping that she'll be well & healthy for her first day of pre-school next Tuesday.

Meanwhile, Birkeley is now 18 days old, and becoming a bit of a character. He likes to stay up & eat for most of the night, and merely snack & nap all day. Jordan joined the "party" last night with some pretty hefty coughing. I'm by nature a night owl, and this would all be fine with me, if only Avery would stay up with us at night so we can all sleep during the day. But she's a solid sleeper from ~8:00pm to 8:00am, so she's good to go for the day! Ugh!

As for all that eating, Birke is a bit of a pig! He had his 2-week check up today, and weighed in at 8 pounds 5 ounces, which is just 1 ounce short of a pound over his birthweight. He also grew 1.5 inches in length (up to 22 inches), and his head grew, too. This was a relief, as a lack of head growth was the first red flag the doctors had that something was wrong with Jordan. Our pediatrician assures us that everything Birke is doing is perfectly normal, which is a relief, of course. But it won't stop me from watching & wondering over the next few months as he is supposed to start meeting milestones (like smiling, holding up his head, rolling over, etc.). But for now all is well, and we definitely appreciate it!

Holding Pattern

2009-01-12T14:47:00.000-08:00

Jordan's taunting us. We thought she'd be home by today, but it looks like the plan is for tomorrow (Tuesday) instead. She's doing well, but still needs a small amount of oxygen. This is a very typical cold pattern for her, but this seems to be a harsher cold than most, so her recovery is dragging out longer than usual.

Devon has been a trooper for a week now, spending almost all his time at the hospital making sure Jordan's getting the best of care! With the help of nana Noma & Kelly, Ed, & Kate, I've been holding down the fort at home. Birkeley is doing very well, but is awake a little too much at night for my liking . . . and of course, Avery is as busy as ever. But, fingers crossed, we'll all be home together again tomorrow. We've missed Jordan & Devon incredibly!

Turning The Corner

2009-01-10T20:46:00.000-08:00

Yeah! Jordan made great progress today, and will hopefully be coming home tomorrow, or at least by Monday. She's off the forced oxygen, eating well, and is awake & alert, and a little bit annoyed -- all good things! So we all have our fingers crossed that this is the beginning of the end of her stay in the PICU for now.

A Slow, Tiring, Recovery

2009-01-09T19:30:00.000-08:00

Ahhhh, if only the rest of us could sleep like Jordan is! She seems to have a whopper of a cold (virual), and she's not snapping out of it as quickly as she usually does. I would have thought by today she'd be almost back to normal, but she's still in the PICU on forced oxygen, and sleeping pretty much all the time. They're weaning her off the oxygen slowly as she gets better, but I'm sure she'll be there at least few more days. Of course we just want her home!

Meanwhile, Devon & I are not getting much sleep at all! Birke is still on the eat every 2-3 hours "schedule" -- and I use that term generously, as he's not much of a schedule kid at all!! So I'm up all day and all night with him, and last night he decided he wanted to snack & party until 5:30am, so it was a particularly long night. Devon has been staying at the hospital with Jordan most of the time. He's been sleeping for a few hours at a time at night in the parents' room, and working during the day. Yesterday he had a very long day in Olympia & Seattle, which cut into his sleep time even more. If only Jordan could share a little of her sleep with us!

Update From The "Hotel Emanuel"

2009-01-07T21:44:00.000-08:00

There's not too much to report on Jordan today. Luckily she doesn't have pneumonia or an infection, just a plain old cold (something viral). She's sleeping most of the time, but does have terrible coughing fits & needs lots of suctioning. She's also on oxygen, and getting respiratory therapy every 4 hours. Devon just talked to the intensivist, who says she's plateaued now, and is on the mend. She'll be in the PICU at least one more day, then maybe on Friday she can move out to the floor.

Devon spent the night and most of the day with her. Then Avery, Birke & I went down and were able to switch out a couple of times so I could see her, too, and Devon could keep Birke away from all the sicklies. Devon will be out of town tomorrow, so Jordan will be on her own most of the day, but nana Noma is going to join Avery & I for a visit so we can switch out with Birke & Jordan, too.

A New Juggling Act

2009-01-06T20:37:00.000-08:00

Jordan went off to the hospital this afternoon, and was admitted to the PICU for "respiratory distress." She possibly has pneumonia, but I'm still waiting to hear the results from the X-ray. Devon will be calling with a full report soon.

So what's new? Devon is on hospital duty, since Birke can't hang out there, especially in the PICU (too much sickness for a newborn), and I have to nurse him every ~3 hours around the clock. We'll probably do some switching in and out tomorrow, but for the most part he's on Jordan duty for awhile. Good thing they have wireless there!

More Birkeley Photos -- Age 6 Days

2009-01-04T21:11:00.001-08:00

Oh yes, more pictures. This are from Friday, the height of his jaundice, when he was 6 days old.

Birkeley is now 8 days old, and on Friday he got a clean bill of health from the pediatrician. His jaundice is subsiding (he's not even yellowish today), and he had gained 3 more ounces from Wednesday. That means that on Friday he was 7 pounds 4.5 ounces, only 1.5 ounces below his birth weight, in only 4 days (he has 2 weeks to get back to his birth weight).

He's such a wonderful baby. I find that I can just sit & stare at him for hours on end. He's so expressive, and I love watching all the funny faces he makes. He very much reminds me of Avery!

Jordan Turns 3

2009-01-03T14:35:00.000-08:00

It's been a little hectic around here, but we did manage to celebrate Jordan's 3rd birthday on 30 December.

The birthday girl over daddy's shoulder

Avery, Kate, Jordan, Devon, Birkeley, Leslie, Sean, and Sarah, waiting for Jordan to blow out the candles so they can have an ice cream cone cupcake (thanks nana Noma, the cupcakes were a hit!)

Avery's top bunk is always the hit of the party

All the kids help Jordan open her presents

An Elmo puppet book

A nice, new sweater

nurse Lisa reads to Jordan from her new birthday book on animals

nana Noma got some snuggles with Birkeley

5 Days Old

2009-01-01T22:09:00.000-08:00

The weather was dreary & grey, but we tried to take a few shots of Birkeley at 5 days old anyway. Here are a few favorites

Post No. 700: Birkeley Comes Home

2009-01-01T21:31:00.000-08:00

It's hard to believe it's Thursday already, and we've been home since Monday afternoon! In that time we've been adjusting to Birkeley as the newest family member, celebrated Jordan's 3rd birthday, our 8th anniversary, New Year's Eve, and even made a 3-kid trip to the pediatrician for Avery's 5-year check-up, Jordan's 3-year check-up, and Birke's first weight check & second bilirubin test.

As you can see, Birkeley is a little bit jaundiced, and has to go back for another bilirubin test & weight test tomorrow. He did well with his first weight check: He gained 3.5 ounces back from his take-home weight of 6 pounds 14 ounces, which was 8 ounces less than his his birth weight on Saturday (7 pounds 6 ounces). Technically he needs to gain back to his birth weight in 2 weeks, so as of yesterday he was almost half-way there. But, he also slowed down his eating a bit over the last few days. Sometimes jaundice makes babies a bit lethargic, then they don't eat as well, which makes the jaundice worse. It's a vicious cycle I'm hoping to prevent. . . .

All packed up and ready to head home
First he got snuggles with Jordan. She's a good snuggler, because she doesn't wiggle and flail around.
We even convinced Avery to join in the picture
Sleep, sleep, sleep. . .
Traditions. This is the same bassinett that Avery & Jordan slept in, not to mention Avery's best friend Kate, too.
Daddy is a pro at "baby burrito" -- sometimes I wake him up in desperation to get him to wrap Birke up after a night feeding. It puts him right to sleep! (Thanks for the hat, Kim).
Oh, yes, the bouncy chair. Who doesn't love the bouncy chair? Avery & Jordan sure did!
If we can get him calmed down we can get him to suck his own fingers.
Snuggles with Devon & Avery. Avery is even starting to hold him on her own, and walk with him a little bit, as long as Devon or I am near
Snooze time ( he really doesn't look that orange without the flash from the camera, I swear!)

My Favorite (Birkeley) Things

2008-12-28T22:04:00.001-08:00

Birke in a very newborn Avery-like pose (I wish I had some old pics of them for comparison). She did the crooked bottom lip thing, too.

Devon is home with the girls for the night, so Birkeley & I are hangin' at the hospital watching The Sound Of Music. I thought it was appropriate to share a couple of my favorite Birke things. . . .

Favorite thing 1. Crying & fussiness! I'm probably the only mom here that loves to hear her baby fuss for food, diapers, burps, and just because. It's such a relief!

Favorite Thing 2. Sucking -- not only is he eating like a monster (yeah), his suck is very strong, and he loves fingers too. Devon even managed to get him sucking on his own fingers for an hour today. Yippee!

The "Newborn Fog" Begins

2008-12-27T23:39:00.001-08:00

Birkeley John Rowe

"Birke"
27 December 2008
1:51 pm
7 pounds 6 ounces
20.5 inches long
Good Samaritan Hospital
Portland, Oregon

Dr. Robin Barrett joins us for a picture. She's delivered all three of our babies, right here at Good Sam!

"baby burrito" -- Devon is a serious pro at this technique -- thankfully

This was the actual color of his feet for the first couple of hours (called acrocyanosis) but they are nice and pink now.

Visitors

Avery & Birke
Avery thought he was pretty cool, was a little nervous to hold him at first, and was obsessed with the fruit plate they brought me from the cafeteria -- I think she ate half of it! Then she helped the nurse out with his first "bath"

Snuggles with daddy -- he wasn't too happy about rubbing up against the beard, though

Grandma Linda & BirkeGrandpa Earl & Birke

Nana Noma & BirkeKate, Kelly, & Ed even made a stop into see us, and Kate did a great job holding Birke (even though she was a little nervous at first). A big thank you to Kelly for the treats, the visit, and even snapping a few pictures for me!

My pre-delivery pedicure -- orange for me, blue for Birkeley. Of course I got them done last Saturday (then we got cancelled), but they held up for the week! Gotta have soft feet & fun toes for a delivery! Labor Story, etc.

Labor was induced, starting at about 1:00am last night. Actual labor began at about 8:00am today, and at 1:00pm things were progressing, but somewhat slowly. Then at 1:30 I felt him shift into "position" -- and he was delivered 21 minutes later (at 1:51pm). His delivery was short & sweet and thankfully uneventful, but we had a staff of nurses here to help out in case he got stuck like Jordan (she had a shoulder dystocia). I am feeling great, I guess the 3rd time's a charm.

Birkeley seems to be an extremely healthy baby. He was very average in weight & length, had APGARS of 9 & 9, and has no signs of the many anomalies we noticed right away with Jordan. His sucking, eating, and swallowing are great -- in fact a little too good for my tastes -- he wants to eat or suck every second he is awake. I finally relaxed and cried when he did (and he's good at it when he needs our attention), since Jordan didn't make a peep for a whole month, and to this day rarely tells us when she "needs" something.

It's easy to compare him to Jordan since she has consumed our lives for the last 3 years, but it's hard to remember what "normal" is and what Avery did. I feel like a rookie again, and am pleased to constantly notice the things he does do, instead of the things he doesn't do, or the things that don't seem right. Our own pediatrician is stopping by in the morning for a full check up, but I'm already optimistic that she'll give him a clean bill of health. I'm sure it'll be a few months before I'm completely convinced, and will wince at every jerk & cringe every time I think he's doing something "Jordan-like." But so far we're off to a good start. Now, if we can just get some sleep to keep us going through the "newborn fog."

Superstitious

2008-12-26T20:10:00.000-08:00

I am a little worried about jinxing things, but, as of right now, Friday night, we'll be heading to the hospital in ~3 hours to start the induction of "baby brother." It's been a long week of waiting, but now that it's actually here I'm getting a little nervous. You'd think by the 3rd time I'd have this down, but each time is a new adventure, I guess. Then we'll have to switch into "newborn fog" mode, which is a challenge in itself!

The last few days have been pretty crazy. With the weather we were actually stuck here last night (for the first time in 2 weeks of the "Arctic Blast 2008"), but Devon shovelled and shovelled and managed to free the van this afternoon. The weather has been above freezing all day, and isn't expected to drop again for a few days, so all the snow on the roads is now slush. I've never been so excited for rain in my life, and I admit I was starting to worry about what I would do if baby brother decided to come early on his own. I was really not in the mood for a home birth . . . luckily that didn't happen.

Nana Noma ended up staying two nights in a row and being a big help with Avery over the holidays. And grandma Linda & grandpa Earl were able to weather the storms and made it here this evening. They will be staying the night with Jordan & Avery over the next few days, and both nurses are working extended hours during the day to keep the status quo with Jordan while Devon and I are at the hospital. Even though it was a long wait for me, it is working out for the best in terms of scheduling, so I have a much better feeling about things tonight.

Fingers crossed. . . .

Here's a picture of us from tonight -- 38 weeks 6 days.

Super Sledder Avery

2008-12-23T00:25:00.001-08:00

Super Sledder Devon

2008-12-23T00:17:00.001-08:00

Uni-Snow-Mobile

2008-12-23T00:10:00.000-08:00

Avery Turns The Big F-I-V-E

2008-12-23T00:03:00.000-08:00

Well, it wasn't a baby brother, but it was a snowy day full of presents, playing with nana Noma & Kate, snow, and sledding-- even sister Jordan got in the act. And, she got to stay up late -- she & Devon got in from sledding tonight after 9:00pm, then she got her birthday cupcakes & hot chocolate going (both of which had colored marshmallows & whip cream on them by the end).

New Free Willy gear. . . .

Birthday cupcakes & cocoa to warm up from sledding, way past bedtime. . . .

Jordan Goes Sledding, Too

2008-12-22T23:58:00.000-08:00

All bundled up and ready to go
Jordan squishing Avery, Avery squishing Devon
A push from neighbor Melanie

Winter Wonderland

2008-12-22T23:20:00.000-08:00

This is the snow that caused the cancellation of "baby brother" before Christmas. . . .

A Make-Shift Birthday Party

2008-12-21T22:57:00.001-08:00

It was too snowy outside to go out for Avery's "party" this afternoon, so Devon drove the chained-up van over to Kelly & Kate's house and brought them to us. After sledding for a couple of hours, we had dinner, opened a few presents, then the girls had fondue & cupcake decorating. What a combo that was. Can you say "sugar festival!"

Avery's creation

Kate's cupcake

best friends on a sugar high

Postponed!

2008-12-21T20:59:00.000-08:00

The weather outside is frightful! And "baby brother" is canceled for 5 more days, until the delivery doctors are out of emergency-delivery only mode. It's very frustrating & disappointing, but like I've always said (well, since I was on fire crew in college), if you can control the weather, you can control the world. . . .

You should have seen the "master schedule" of nurses, grandparents, and friends I had ready to cover things at home with Jordan and Avery! But frankly, things have been falling apart for a few days, so I guess we were meant to wait. First grandma Linda wasn't feeling well last week so they postponed their trip down (they were going to arrive tomorrow). Nana Noma is doing well, but still recovering from her knee replacement surgery, so she's unable to do any 1-on-1 with Jordan because she cannot lift & move her. Also, the nurses had to cancel as the roads are just terrible, and it's not worth everyone's safety to be out and about. We're just going to hole up in the house and wait it out.

The worst part is that tomorrow is Avery's birthday. She was looking forward to having baby brother as her main birthday present, but oh well. Then to top it off, we were going to go to Big Al's for a little lunch and games or bowling this afternoon, but it, and Chuck E. Cheese (and most other places in Portland/Vancouver) were closed. So we threw together a little make-shift party with nana Noma, Kelly, & Kate. Kate & Avery went sledding with the neighborhood kids, frosted cupcakes & had chocolate fondue. Avery even opened a few presents early, so she doesn't seem too disappointed about things so far. Nana Noma is staying the night tonight (as planned before) and will help us celebrate Avery's real birthday tomorrow, whatever that brings.

So, it looks like we'll have a white Christmas, and hopefully be able to get our master schedule back together for the weekend. Then we can bring baby brother home early next week, once and for all. 5 more days. . . just 5 MORE days. . . .

Snow Day, Finally!

2008-12-20T21:21:00.001-08:00

Yeah, finally enough snow to really make a day of it. Devon & Avery were outside playing in it from dawn 'til dusk, with just a few warm-up breaks in between. Even Jordan got out for a few minutes, but she wasn't thrilled about the snow hitting her face, so she didn't last too long. Sledding & snowball throwing were obvious, but the unicycling neighbor was a little unexpected. Who would have known you could do that in the snow on a hill?

The wind-up. . . .
The toss!
Down & around
And back up again
What is this stuff and why is it hitting my face?

The Blizzard. . . .

2008-12-19T15:40:00.001-08:00

We finally got some snow. Not much though. This was about as much as we got on Thursday morning, then again on Friday morning, but both days it was nearly melted away by lunch time. Avery wore her snowpants to school, just so she could wear them, but it was really overkill! She did get to play in a little more snow at Ariana's house in Portland on Thursday afternoon, so that made her happy. The neighborhood kids were out sledding both mornings, but it didn't last long.
Our token icicle. Avery was worried it was going to fall off and hit someone in the head, so she started whacking at it with the rake to break it off. It melted soon enough, and no one was injured!

Elf Your Friends & Pets

2008-12-15T00:35:00.000-08:00

Avery LOVES ElfYourself, and begged me all day today to make a special one for her. Here it is, as requested:

Avery, BFF Kate, Sierra (Avery's grey kitty), Mojave (Avery's orange kitty), and Piper (Kate's golden retriever).

The Rowes Got Elfed!

2008-12-15T00:33:00.000-08:00

Thanksgiving is over, time for Christmas. Enjoy!

Blizzard! Blizzard?

2008-12-15T00:24:00.000-08:00

Hmmm, according to the Portland news channels, it's brutal out there. But this is all we got at our house:
Devon and I went to see Four Christmases today -- hilarious! The roads and parking lots were icy, but it wasn't that bad. Now, according to the news in Portland, it's a nightmare on the roads. Almost all of the schools in the area are closed, the governments have late start times, and roads in Oregon are requiring chains. Of course, Jordan has an appointment "on the hill" (Oregon Health Sciences University) tomorrow, and now I'm worried we're going to have to reschedule it. She's supposed to go see this neurometabolic team every 6 months, and we already had to cancel our September appointment due to her hospitalization for her tonsillectomy scare, and 15 December (3 months) was their first available! If we have to cancel tomorrow & get the next available appointment it'll be March -- a full year -- before we can make it up there again. But, boy, it is a steep hill to get there! I foresee Devon putting chains on the van in the morning. . . .

This And That

2008-12-14T22:13:00.001-08:00

It has certainly been busy around here, no denying that. Holidays, birthdays, a baby brother about to make an arrival, on top of the normal medical stuff that we're always dealing with. So here's a little update for those who are interested.

Jordan has been very awake & alert in the afternoons and evenings for the past few weeks, since we stopped giving her an afternoon dose of Tranxene. Here she is a couple of nights ago while sitting in Devon's lap. She rarely had her eyes open & was this awake before. Catching these moments with a camera was virtually impossible, but not any more!
Tranxene is a drug mostly used for anxiety, and was first prescribed to her over 2 years ago when she was coming off the effects of ACTH (steroids) that controlled her brain-damaging Infantile Spasm seizures. But, because it also has anti-seizure effects, no one ever wanted to take her off it completely. With a hefty dose of Tranxene, in addition to Keppra & Depakene, we enjoyed a full year with virtually no seizure activity. However, Tranxene is very sedating, so Devon and I decided to work with her neurologist to see if we could decrease the dose so she could "wake up" a bit more -- and of course, keep seizure control. Success! Well, mostly success. We are seeing a few very small seizures each day, but it's worth it to us so far to use the smaller dose of Tranxene to allow her to be awake & alert for so much more of the day. She's "babbles" more, and moves more, and it's worth the trade-off (as long as the seizures stay the same or improve, but if they get worse we'll probably have to add it back).

One of the many reasons we wanted her to be more alert during the days is because she's off to pre-school in January. Her home-health nurses will be going with her (for 1-on-1 care), and if she's in school for therapies & education, it seems like it might be a good idea for her to be awake for the activities. It's taken me almost a year to come to terms with the idea of sending her to pre-school, I feel like we are basically sending her to the moon, but at the same time, why not!? All the other kids do it, right? She'll get her therapies & might even reach some developmental milestones, and if nothing else, she will get to know the world and the world will get to know her. I am fascinated about the other children will interact with her. I'm sure it will be a positive experience for all involved. At least at this age, right? For now we're just trying it out. If we find that it's too overstimulating, overwhelming, a logistical nightmare, or she is exposed to too many germs & gets too sick we'll re-think it and have school come to her, which is another option. But for now, off to the moon!

Avery & Devon are doing well, despite both having minor colds. Nothing to stop them from getting ready for baby brother, birthdays, and Christmas. Avery is counting the days -- 7 days until Winter Solstice, 8 days until her 5th birthday & baby brother's scheduled arrival.

Yes, in 1 week from today I'll be packing my bags and heading to the hospital to get "baby basketball" -- his new nickname -- out! There are so many things for me to worry about that I have almost entirely given up worrying about them, and am now focussing on my sore back & hips, and exhausted body. Why can't I just bank up a bunch of sleep between now and then, instead of "practicing" for a newborn by only sleeping 1-2 hours at a time? Ugh, okay, I'll quit complaining.

We saw the perinatologist on Wednesday, who says that his brain development is wonderful. Everything is there, and is the right size. The rest of his anatomy is correct, too, and I don't have any signs of polyhydramnios at all this time (in fact, his tummy & his bladder were full, and my fluid levels were 50th percentile -- totally normal). We don't have much to go on as to what went "wrong" with Jordan, but we do know that her brain didn't grow right. Had we been looking at this level of detail, we probably would have seen these malformation in utero, but we weren't looking. The only thing that was strange with Jordan and my pregnancy with her was the excessive amniotic fluid levels -- she wasn't swallowing the fluid like she should have been.

The only other notable thing is that the little mister in there is fairly small. His growth seems to have slowed. He was estimated at 5 lbs 5 ounces last week, which at 36.5 weeks is only 17th percentile for size. However, if he does gain a half-pound per week until he's induced at 38, he'll be pretty close to Avery-size (she was 6 lbs 7 ounces when she was born at 38 weeks). Jordan, on the other hand, was a whopping 8 lbs 5 ounces at 39 weeks -- which is a big difference we were told -- usually babies from the same mother are all about the same size, boy or girl. So, even though he's small, it just makes him more "Avery-like" in my opinion, which is a good thing -- as we all know how smart & healthy she is!

So, fingers crossed for health, and counting the days -- unless he decides to show up early, as I'm already dilating and he's already in position. Yikes! I don't have nurses scheduled until the 22nd to pick up the slack with Jordan while I'm in the hospital though, so I hope he hangs in there until next Monday!! That would be a scheduling nightmare. . . . ;-)

A Regular Trip To The Dentist

2008-12-14T21:56:00.000-08:00

After the big Santa party at the dentist office on Tuesday we had to return on Wednesday for the girls' 6-month check-up. Jordan has some serious oral aversions, but did really well. She doesn't like anyone playing with her mouth, but she didn't gag and barf on anyone, so I considered the trip a success. Although the cleaning with the hygientist went well, she did cry, and I mean sob, when the dentist was poking & scraping. He didn't seem to get the gravity of the situation, but to those of us that know her intimately, there are only a handful of things in the world that make her tear up like that -- and oddly enough, hairbrushing is the main one. She doesn't even cry like that when she gets shots, blood draws, or IVs started, so teeth scraping is an entirely different level of discomfort for her!

Hey, this isn't my sucko!

Avery was a good sport about things. She even got to choose the movie on the TV screens for the whole office -- she chose Elf -- same as last December.

Then she gave the sucko a try for herself (even though she's quite familiar with suctioning, she's never brave enough to try Jordan's, and thinks it's hilarious that Devon is that brave! )

Hangin' out with Morgan, who was waiting for her sister to be done in the next room. Morgan was fascinated with Jordan, and got hooked on Elf so stayed to watch while Avery was having her turn.

Watching Elf while waiting for the dentist -- good news, no cavities for either of them!

Santa At The Dentist

2008-12-09T22:56:00.001-08:00

Each year Avery & Jordan's dental office (Adventure Dental) has a Santa party. Besides a chance to sit with Santa & Mrs. Claus, there are activities for the kids, and even cookies & milk for the kids (but they have to brush their teeth when they get home, right!).

Jordan gets a snuggle from the Clauses

Avery managed a smile too, and asked for Moon Sand & a pogo stick (she's been hooked on those 2 items for weeks now, and I don't know where she heard of either of them).

BFF Kate joined the festivities, too

After sitting on Santa's lap Avery went back to her recent "hipster" look. She never used to like wearing a hat, now she tells me she likes to wear hats "like boys" -- I guess she must have picked that up at pre-school. Note the High School Musical bling, too! Writing letters to Santa -- Moon Sand & pogo sticks were on both Avery's & Kate's lists

Playing a silly game at one of the activities

The Lumberjacks

2008-12-09T14:15:00.000-08:00

For Christmas this year I booked a session with a professional photographer who does pictures of special needs kids, and the only time she could come was on Saturday, 6 December, at noon. So, I HAD to get the tree up and decorated before she got here. The only way to do that was for Avery & I to venture out for a tree ourselves.

On Friday we went to a local tree farm to find the perfect tree. "Perfect" being the operative word, here. I'm more of a "Charlie Brown tree" person, and would have loved nothing more than to drive up into the forest for an hour and chop down one not-so-perfect tree. But time, and frankly energy, were not on my side, so this year it was girls only to the tree farm (where they strive for unbelievable perfection in their trees). The weather was crisp & clear & gorgeous, so Avery and I wandered around for ~2 hours before we found our "perfect" tree -- a Balsam pine. One of the workers said he would come cut it down for me when I found it, but I couldn't be bothered*, and frankly, their saws were sharp & the cutting was like butter. Then I packed it back to shake it and pay for it -- Avery scolded me every time the tip hit the ground, so it must have been a site to see me & my 36-week pregnant belly packing this 7 foot tree on my back, with an almost-5-year-old scolding me for letting the top touch the ground. Good thing it was nice & light and we weren't too far away from the barn!

Devon helped me unload it and get it in the stand when we got home, then Avery & I decorated it before the day was done. We were ready for the photographer the next day, phew! And we have a great tree to enjoy for the rest of the holiday season.

Acres of "perfect" trees. . . .

In the shadow of Mt. Hood -- we could see Mt. St. Helens & Mt. Adams from the tree farm as well, but I didn't get any shots because the trees were always in the way in those directions (north & northeast).

Avery on the hayride (a covered, tractor-pulled wagon with plexiglass at the front). When we went on it we were the only passengers.

A few favorite shots

For the first hour Avery was OBSESSED with sawing through a stump all by herself. I let her try & try, but she never made it all the way through. I guess she gets this trait from her mother. . . (do I see a summer job with the Forest Service in her future?)

Oops, muddy knees. . . .

She only wanted her picture taken if she was balancing on old tree stumps, but once I got her up on this stump she thought it was too high to be safe -- can't you see it in her face?!

Avery was psyched to find a burro at the tree farm. She ran up to him yelling "Tonopah, Tonopah" and I had to drag her away to continue the tree hunt. When we were back out in the trees she asked me "Mom, why are all donkeys named Tonopah?" Well, Avery, because you name all the donkeys you see Tonopah. . . . Ahhhh, circular reasoning with an almost 5-yr-old!

Right next to our tree -- it looks like fall instead of winter!Avery posing with "our" tree, all natural!

Ready to head home (the tree farm worker actually placed the tree on the roof for me, but didn't stay to help strap it down, so I had to do that myself, too). Exactly the right height!!

Avery & I almost done decoratingAll done decorating -- ready for pictures with the photographer on Saturday (with the daylight through the french doors -- much better!)

*I spent 5 (college) summers on a US Forest Service fire crew, and when I wasn't putting out fires in the woods, I was thinning (culling sick & damaged trees) old logging units, getting them ready to burn in the spring & fall. So, this was about the 60,000th tree I have cut down, although perhaps only the 5th or so with a hand saw instead of a chainsaw.

Playin' Catch-Up

2008-12-05T22:54:00.000-08:00

I'm trying to pace myself for the holidays, and the arrival of "baby brother", expected just before Christmas. So, I'm a little behind. . . . oh well.

Afternoon snow at grandpa-grandpa John's house

For Thanksgiving Devon & I took the girls to the family farm in Usk, Washington, ~1 hour north of Spokane. That's 8 hours from here, which is a long way for kids and an 8-month pregnant lady. . . . But, Devon managed to get us there in time for turkey dinner with the family: Grandpa-grandpa John, grandpa Gary, uncle Jon Paul, aunt Linda & uncle Brian and their family, even some neighbors joined in the feast. Then we had some brave guests that showed up outside, too!

"wild" turkeys at grandpa-grandpa John's house

We were able to stay the weekend and had a good visit with the whole family.

When we got home we were able to squeeze in a little gingerbread house-building tradition with Kelly & Kate. It didn't go quite like planned, but we all had a good, chaotic time anyway.

Mid-way through, and you can see the structural failures of Avery's gingerbread house -- both roof pieces were broken out of the box. I tried to "glue" it all together with frosting and popsicle sticks, but it just wasn't strong enough to survive . . . .

We looked away for a second, and bam! Collapse. As soon as it was down it was game over -- they were frosting the pieces, and eating them hand over fist.

Kelly ended up decorating the remaining one, while the girls, all honked up on frosting & gumdrops, played like maniacs for at least another hour -- completely disinterested in the gingerbread houses

Happy Thanksgiving

2008-11-27T06:48:00.000-08:00

Maybe I'll have an exciting story & some photos to go with it within the next couple of days -- or maybe just a relaxing turkey day. Enjoy!

A Decoration For Nana Noma

2008-11-22T23:21:00.000-08:00

When we went to the hospital today Avery felt like she needed to bring nana Noma a decoration to brighten up her room (the flowers just didn't do it for her, even though there were 2 mini-sunflowers in the bouquet -- her favorite). Somehow she decided on making her a gingerbread house for her hospital room, so she & Devon made it tonight & we'll take it to her tomorrow.

I'm really not sure what that face was about -- something serious I'm sure

All done, and it looks great!

Ouuuiiieeee!

2008-11-22T22:32:00.001-08:00

Warning: gory picture below

After ~25 years of limping & pain, nana Noma had her right knee replaced (with a titanium one) on Friday. It's incredibly painful, partially because of the surgery itself, and partially because her knee is straight now for the first time in a quarter century (and all the muscles have to adjust to their new "normal" position). She had the surgery on Friday afternoon, and PT showed up at 4:00am on Saturday morning to get her up & walking (with a walker). As long as she doesn't twist it she can't hurt it, but boy is it hurting her at this point!

Defying The Odds

2008-11-22T00:59:00.000-08:00

Jordan seems to have croup, or perhaps it just started out that way (it's going around). On Tuesday night she was "barking" when she coughed, but it turned all moist & mucus-y shortly after. Now she just seems to cough when she's sitting up, but lying down she's fine (at least for about 95% of the time). She went to the pediatrician today for a "baseline" check on the cold -- no pneumonia, bronchitiolitis, ear fluid build-up (in the left ear, the one without a tube temporarily). In fact, she's had no yellow goo or fevers, so there's no reason to think she has an infection going on. Just a terrible, juicy, cough. This is definitely defying the odds. I would have guessed she'd be in the hospital by now, but she seems to be on the upswing (knock on wood). But boy is she pathetic & miserable when she coughs! Breaks my heart!

In other statistical anomalies, Mojave is one of the 20% of cats that has a yeast infection in his ears (instead of ear mites). 80% of the time a cat has black goo in his or her ears it's from ear mites -- so we've been treating him for ear mites since he came home in late September -- to no avail. I finally dragged him to the vet this week, and he confirmed my suspicioin -- no ear mites. Fortunately, the cleaning drops & ointment the vet gave us seem to have eliminated the problem in 3 days. Unfortunately, we're supposed to keep up the treatment for 10 days. Ugh!! In case you didn't know this -- cats hate having stuff in their ears -- so it's a rodeo every night. 3 days down, 7 days to go. . . .

And in even skimpier odds, Sierra is one of only 1.2% of cats that had oxalate bladder stones. Unlike the "normal" (98.8%) bladder stones that are nice & smooth, oxalate stones are sharp & shaped like jacks, are hard to feel, and cause extreme pain & bleeding as they poke & cut around the bladder. No wonder she was having such peeing issues! Unfortunately the cause seems to be the catfood she'd been getting for the last year. I had her on Iams for 7 years & she was fine, then our former vet told us to switch her to NutraMax, and voila! oxalate bladder stones for Sierra! Now we have a new vet, who quickly identified the problem, removed the stones & insisted that we get her back on Iams. Luckily I switched her back to Iams on my own a couple of months ago. Hopefully the horrible peeing incident chapter is closed, and we can all move forward with great litter box habits!

Another Update

2008-11-20T14:08:00.000-08:00

Well, besides raking up the leaves (see below), we've been very busy, as usual.

We're sorry to report that nurse Robin is no longer with us. She was traveling from a few hours away and staying in a hotel to be with us each week, and it just got to be too much for her life & family. We totally understand, but we do miss her. So, we've been in the process of finding a new nurse to help us out with Jordan. We're glad to report that Amy has joined "the team" & will be here 3-4 days a week. We're very thankful to have her, as she is a wonderful, caring person!

Good thing for the help, too, as Jordan is sick again. I've thought a couple of times since Tuesday night that we'll be heading to Emanuel (the children's hospital) at any time, but just when it seems like it's time to go she bounces back. She's coughing like a maniac, which requires constant suctioning, and she's miserable. Luckily, she doesn't have a fever, and if she can fall asleep, she can stop coughing. Unfortunately, when she is coughing, she's getting dehydrated, too, because she can't keep her food down. So now we're doing a continuous, slow feed all day, instead of her usual 5 meals a day (each ~1 hour long). Fingers crossed that we can weather this "storm" at home, as I'm in no mood to spend the night in a blue chair in the PICU at this point.

Of course Avery is probably the culprit -- she has a bit of a runny nose. . . probably picked it up at pre-school. Nothing worse than that for her. Jordan just can't handle colds the way the rest of us can! I have a little bit of the snuffles, too, but not nothing serious. I'm hoping it stays that way for all of us.

I finally broke down and went to the hand surgeon about my finger. I made them put 3 lead blankets over me for the x-rays, which was why I was avoiding the doctor. But, after almost 6 weeks I knew I had to do something, because it's still swollen, painful, and I can't bend it. The doctor seemed a little disappointed that I don't need surgery, but I was happy to find out that even though there is a small bone chip in the middle joint, it shouldn't be a long-term problem, and that most of the damage was to the ligaments & tendons. He said to get bending it soon, and come back in 3 weeks. I am making real progress at bending it now that I'm not worried it's going to make it worse. I really need my hand back! Talk about inconvenient!

And best of all, Devon is home from his 3 days at the office in Orange County. Luckily he doesn't have to travel too much, because boy do we miss having him at home!

Leaves, Leaves, Go Away!

2008-11-20T13:30:00.000-08:00

After a week of torrential rains, it cleared up last weekend and we were able to get most of the leaves raked up and out of the yard. Phew, what a relief. Too bad the Sweet Gum in front won't be done dropping leaves until mid- to late-December, but at least the rest of the yard is done! Avery was a good helper, mostly with stomping!

Neighbor Sarah came to play (help) too!

And then they were gone (trust me, there's a lot of leaves in the trailer -- more than it looks -- I was the one stomping them down!!)

Fun In The Autumn Sun

2008-11-14T23:44:00.000-08:00

Heather, Katie, and Noah invited us over this afternoon for a spontaneous play date. We need to do this more often -- how does life get so busy? The weather was great, and so was the light, so I made sure to get some pictures of the gorgeous babes.

Avery (almost 5) & Katie (almost 4) took turns in the Dora Jeep.

Silly pose on the sofa

Katie's baby brother, Noah (6 months old already?!?!)

Katie, Heather, & Noah

All About Jordan

2008-11-11T22:02:00.000-08:00

When it rains, it pours, and it has been pouring here lately -- literally & figuratively!

Jordan getting ready for a walk with Devon on Saturday morning, rainboots & all.

We always seem to be pretty busy around this house, but lately it's been exceptionally busy, for Jordan in particular. It seems to come in waves with Jordan: We can go months in "normal" mode -- then suddenly we're in high gear with all the "extras."

Besides Jordan's normal regiment of feedings, medicines, & therapies (physical, occupational, speech, vision, & education -- each week or every-other week with the therapists, and daily exercises at home), she's had 2 hospitalizations and numerous doctor appointments in the last two months, and more on the horizon over the next few weeks.

After her tonsils came out in September (and she survived respiratory arrest from a bad Codeine reaction) her sleeping & breathing improved almost unbelievably. But, the tonsil removal didn't totally solve the "gurgly" breathing, so just to make sure we aren't missing something, I took her to the allergist last week. He tested her for a few foods & the common environmental allergies (28 pokes on the back!), and as usual with Jordan, her test results were totally normal! No allergies, and no more Zyrtec (it seemed to help back in May, but I must admit that when we stopped it last week I haven't noticed any difference or increase in mucus or secretions gurgling around in her throat).

The allergist is partners with a dermatologist, so we set up an appointment with him as well. Over the last few months she has been getting red marks on her right elbow, hip, & knee. I was worried these were the beginnings of pressure sores, and asked every medical person or therapist she saw what they were. No one knew, and no one thought they were pressure sores, but even so, we avoided putting her to rest or to sleep on her right side just to make sure*. The strange thing was, that even when she wasn't on her right side for almost a month, the red marks didn't disappear for weeks. Also, sleeping & resting on her left side didn't cause the marks to appear on her left side. The dermatologist quickly admitted that he didn't think they were pressure sores either, but he also had no idea what they could be, so she had to have a small skin biopsy right there in the office. Poor Jordan, not just more needles (numbing), but an actual cut in her arm this time (it was her 3rd skin biopsy, as well, the first two were for lysosomal storage diseases/metabolic diseases when she was 6 months old -- also totally normal, as are all her tests [except brain MRIs & EEGs]). Those red spots finally faded, and on Sunday she had 2 more small ones -- one on the right hip & one on the right elbow. The biopsy results came back today (after an independent second opinion no less): non-specific. Of course, just one more of Jordan's little mysteries!

It seems to be a particularly harsh cold season already, and Jordan is suffering like everyone else, only worse. She's already spent 4.5 days in the PICU in October for nothing but a cold, and it hasn't fully resolved yet. Two weeks ago her ears were draining a mucky yellow goo -- this was good -- it was draining through her T-tubes instead of backing up in her ear & causing an infection! But, as all good things, it had to come to an unfortunate end. The T-tube in her left ear extruded, so last week I had to take her to the ENT & have him remove it from her ear canal (it had been there for a week & hadn't come out on it's own). T-tubes are supposed to be semi-permanent, and last a couple of years, rather than a few months, like more traditional ear tubes. But Jordan has only had them since February, so the one that extruded only managed to stay in place for 8 months. Ugh! Also, she had a bit of granulation tissue on her eardrum, so she's been on antibiotic/steriod drops for over a week. She went back to the ENT yesteray to see if it has healed (almost), and in 3 more weeks he'll decide when to replace the tube. She frequently has drainage from them, which prevents infections, so it's important to keep them draining. Luckily it's a simple, outpatient procedure.

Last Monday she had to have her blood drawn for the neurologist. We see him next week. We've had great success over the last year controlling her seizures with Keppra, Depakene, and Tranxene (much to the medical world's shock & amazement), but we have to monitor her Depakene levels every 3 months to make sure her dose is still therapeutic. Equally important, we have to closely watch her liver function, as liver failure can be a nasty side-effect of Depakene. In the past getting blood from Jordan has been a nightmare (and starting IVs is not much easier), but we totally hit the jackpot this time! The phlebotomist at the lab on Monday was the only that had never drawn Jordan before, and she got her bleeding like a stuck pig on the first try! I was amazed, and for once she got ALL of her labs drawn all at once (Depakene trought, complete metabolic panel, complete blood count). For once we'll have a great set of data when we see the neurologist next week!

Unfortunately, we have been seeing seizures here and there lately. Not alot, and not serious ones, but but enough to make us wonder if the "honeymoon" of seizure control is near. Having seizure control with her has been our saving grace this past year -- she really couldn't function at all when she was seizing all the time, so we're desperate to prevent seizures at almost all costs. But, on a side-note, we're also very interested in seeing what her alertness would be like without her Tranxene. It was never intended to be a seizure med for her, as we started it as an anti-anxiety med when she was about 8 months old, after a brutal 8 weeks on a steriod (ACTH) for infantile spasm seizures (which are one of the few types of seizures that can cause brain damage). It calmed her down, but perhaps a little too much. And desperate to get & keep seizure control, we have continued her regiment for the last 2 years. But now, since the Depakene seems to be the major player in stopping her seizures, Devon & I both want to know how much more awake she would be without it. Could increased alertness help her see & learn a little better? We've decided it's worth trying! Unfortunately, it's very difficult to get off Tranxene, and I wouldn't be surprised if it takes up to a year to wean off. I hope that the neurologist is supportive of this idea.

Things are changing all around, and along with some minor siezures, we're starting to see evidence of reflux again. Since we started her on blenderized food (instead of formula) over a year ago her constipation resolved, and her reflux followed suit. She's been off her Zantac since May & doing great, but now the painful burps & hiccups are back. We're starting the Zantac again to see if it helps, and will be off to see the Gastroenterologist next week. I hate adding medicines to her daily regiment, but I hate to see her suffer even more, and Zantac side-effects are relatively minor compared to some of her other meds.

She also has an appointment with the Neurometabolic team & the dentist in December. Never a dull moment!

On the school front, Jordan will "age out" of her Early Intervention program when she turns 3 (30 December), so now we are in the early stages of figuring out how we're going to get her to pre-school. We met with the school's nurse last week as a very preliminary step to getting her into the classroom. I can see that it is going to be a logistical nightmare, if nothing else, and I am nervous (especially in this economy) to see how the school district is going to handle her special needs. Of course they are federally mandated to accommodate her at school, but that doesn't mean that they are funded to do that (nice trick of government, eh?). Devon & I are determined to fight for her rights, but we're hoping it doesn't come to that. We just believe that she deserves to be in a classroom with other children, or at least to give it a try & see how it goes. But everything from getting her there to what she will do while she is there is up in the air. Obviously someone will need to go with her -- a nurse from the school? Provided by us? We'll just have to see what the logistics will be when we get to her IEP meeting (individualized education plan).

It's only going to keep "raining & pouring" around here, through November right into December. And right around Christmas-time it'll be time for "baby brother" to join the chaos! Never a dull moment!

It's enough to wipe a girl out! Jordan is an even better sleeper since having her tonsils out in September, and we sleep better, too!

*Pressure sore scare me to death -- Christopher Reeve eventually died due to infected pressure sores -- and he had to have some of the best medical care in the world!

Happy Birthday!!

2008-11-08T16:40:00.000-08:00

HAPPY 35th BIRTHDAY DEVON!!!

Yes, Devon turned 35 on Friday! Grandma Linda & Grandpa Earl were on hand to join in the festivities. Avery loves birthdays, and was so proud of her cupcakes & birthday presents. Nana Noma helped her make mini-cupcakes & pick out a t-shirt for daddy. I helped her pick out a new belt for a gift. But the one she was really, really excited about was the one she picked out herself: A SpongeBob Squarepants jump rope. We're not sure why she chose this, but she couldn't have beamed with more glee than when daddy opened that present (first, of course). She's having a blast trying to jump with it. . . .

A Cold Rainy Day

2008-11-05T22:42:00.001-08:00

You know the short, wet days of winter are upon us when we get out the box of marble tracks & spend the afternoon in the playroom. Avery is getting very good at building her own, and I'm getting better at letting her :-).
I guess you're never too big to play in a box. Well, until you are too big to fit into a box, but Avery's not quite there yet.
Jordan had a nice, restful afternoon watching us build the track and race the marbles, between naps that is.

Crazy Days

2008-11-04T22:05:00.001-08:00

Usually it's "no news is good news" here on my blog. Over the last few days it's been "no news because there's no time to update." I'm hoping to catch up soon -- there has been a lot going on. We are all well, but just barely keeping our heads above water. . . . Tomorrow is going to be another busy day, too, but maybe by tomorrow evening I'll have a chance to really update. Or not -- we'll see, but don't lose heart, we're still here!

Trick Or Treat!

2008-10-31T23:14:00.001-07:00

Ugh -- Halloween & rain! I was worried this morning when I saw the rain & clouds, but luckily as the day progressed the weather cleared up. It was even a nice temperature for trick-or-treating. Jordan went along, too, although I think she "gave" Avery all her candy. Avery, however, is willing to give things that have nuts & coffee (i.e. toffee) back to Jordan (so that she can have it in her blend -- NOT!) or "share" them with Devon since he's the one that took her to all those houses. I guess Devon's going to score all the unwanted loot.

Horsey Avery & her horse jack-o-latern

Horsey Avery & her "scary" jack-o-lantern

This horsey is an Arabian (like "the Black Stallion" -- her favorite character right now): see how its tail sticks out? Getting ready to go

Toucan Jordan

Devon dressed up as Paul Revere and went trick-or-treating with them

Okay, now it's late and things are getting silly! That miniature horse is too small for Paul to make his midnight ride!

Trick-or-treating at nana Noma'sA rest for the horse & the toucan on nana Noma's lapEnough of the toucan suit! Jordan was glad to be out of it.

Neighbor Sarah was a gorgeous princess (Devon made candy apples for us to give out, although I accidentally got the credit since I stayed home to pass them out -- our neighbors should know by now who the real cook is in this house. . . . )Neighbor Sean was a Teenage Mutant Ninja Turtle (and not at all interested in getting his picture taken. . . .)

Jordan decorated this pumpkin this afternoon (with help, of course)

The jack-o-lanterns waiting for the trick-or-treaters (we only had 7 -- about what we expected, since our neighborhood is full of cul-de-sacs, has few street lights, and no sidewalks, so only the few local kids show up)

I was very disappointed that the owl pumpkin didn't last very long this week. . . . UGH! Must have been the nice, warm weather

Can't Get Enough

2008-10-29T00:14:00.000-07:00

Despite my nagging, annoying cough, the weather was too wonderful to pass up another trip to the pumpkin patch on Monday. Avery & I picked up Arianna & Heather in Portland and drove out to Sauvie Island so they could get their pumpkins ready for Halloween on Friday. Avery was adamant about "No pictures, I did them last week," so most of the shots are of Arianna. Most were action shots, as the girls ran & ran & ran for the entire 1.5 hours we were there -- I had to beg for a few seconds of sitting still. Avery was asleep about 2 minutes after going to bed that night (following an "awake over" at Kate's the night before (was supposed to be a "sleep over" but you can guess by Kelly's description how it went . . . .), and ice skating lessons immediately after the pumpkin patch). So much to do, so little time! Such a wonderful place to be with friends -- and I love the pumpkin patch!

Arianna & Heather -- Arianna paused long enough for 2 shots only!

A rare shot of Avery on Monday

Silly girls!

running, running, running

Time to head home with the pumpkins

Avery's Pumpkin Carving

2008-10-29T00:04:00.000-07:00

Avery & Devon carved her pumpkin on Sunday morning, and she found out first hand just how tiring it can be on your hand. This is the pumpkin of her own design (and about half of her carving -- luckily Devon was able to help her out).

Our very own Halloween spider web on the mailbox
Jordan watched us intently on Saturday as we were carving pumpkins -- or at least she had her eyes open

Jack-O-Lanterns

2008-10-25T22:55:00.001-07:00

I got my pumpkins carved today -- there goes 6 hours down the drain. . . . A super big thanks to Devon (and Avery) for doing the dirty work! They got up and cleaned out the insides of the 5 big ones while I got to sleep in (and because my finger is still mangled & it would have taken me a lot longer to do it than the 1.5 hours they spent). There are 2 little ones to go, and Avery really wants to give it a try this year, so perhaps she & Devon will finish them up tomorrow.

Avery & her Black Stallion pumpkin -- the one she picked from the Vancouver pumpkin patch a couple of weeks ago

Pumpkins Pumpkins Everywhere

2008-10-25T22:14:00.000-07:00

Sauvie Island Farms, October 2008

BFFs Kate & Avery (both 4.5 years old)

Kate did not think it was too funny when she fell in the mud at the end of the dayUntil Avery "accidentally" fell in, too, and couldn't quit laughing about it. Good thing we had some extra clothes back in the car, and a pumpkin bath . . . . Kate & her mom, Kelly

Pumpkin Patch Flashback

2008-10-25T21:40:00.000-07:00

Every October is pumpkin patch time at Sauvie Island. Here's the first blog from our trip last Tuesday. There's at least one more to come.

Avery (4.75 yrs old) & Leslie, October 2008
Avery (3.75 yrs old) & Leslie, October 2007
Avery (2.75 yrs old) & Leslie, October 2006
Avery (1.75 yrs old) & Leslie, October 2005
Avery (10 mos old) & Leslie, October 2005
Jordan (2.75 yrs old) & Leslie, October 2008
Jordan (1.75 yrs old) & Leslie, October 2007Jordan (10 mos old) & Leslie, October 2006Jordan (2.75 yrs old), October 2008
Jordan (1.75 yrs old), October 2007
Jordan (10 mos old), October 2006
Avery (4.75 yrs old), October 2008
Avery (3.75 yrs old), October 2007Avery (2.75 yrs old), October 2006Avery (1.75 yrs old), October 2005Avery (10 mos old), October 2004

Bits & Pieces

2008-10-22T20:49:00.000-07:00

I seem to have come down with a terrible cough (feels like razor blades in the chest) -- but only when I lie down, so I've been up for hours today. . . . Just call me "Zombie Mommy" for the next few days. I did get a little sleep after Avery went to pre-school this morning. At least I didn't get the cold that Avery gave Jordan (that landed her in the PICU for 4 days a couple of weeks ago). That was a nasty one, and everyone around me seemed to have had it. For the most part Jordan has recovered, but she's still a little "juicy."

In the mean time, I thought I'd update on some of the bits and pieces of our life over the last few weeks.

Grey kitty, Sierra, has been having "pee issues" for a couple of months now, and after a 2nd opinion vet, she had surgery this morning to remove bladder stones. Ugh! I wish we had figured this out earlier. I can say that we definitely have a new, better vet for the cats now. She came home this afternoon with a 1.5 inch incision, and staggering like a drunkard. She's really pathetic, but should be on the mend soon.

Orange kitty, Mojave, brought back with him ear mites, after his 27-day outdoor adventure in Aug/Sept. So, each day, twice a day, I'm supposed to catch him, clean out his ears, and put 5 drops of ear mite medicine in each one. Yeah right. Devon and I are lucky to get it done once every other day, but they are slowly getting better. Over the last few days he's been whining like a Siamese cat with a car parked on his tail because his sister Sierra has been at the vet and he misses her. Back to earplugs for me when I try to sleep. Now that she's home he's driving her crazy by "chasing" her around and sniffing her, and she can barely stagger away from him -- but wants to. So now they are separated, and he's whining again. . . .

And speaking of ear drops, Jordan's ears are draining a gelatinous, yellow goo. I should be glad, because this means that her t-tubes ("permanent" ear drainage tubes) are working and her her ears are not getting infected with what's draining out. But, when this happens, we have to keep her ears clean and give her ear drops twice a day (which I personally consider pure torture, so I'm not too excited about administering them, either, to child or cat). We've been doing the drops for a few days now and they seem to be getting less gooey each day.

And as a pure inconvenience, I managed to mangle (break, I think, but I won't go get an x-ray because I'm pregnant) my left index finger a couple of weeks ago when I was leaving with Jordan from the hospital. I was wheeling her to the van after her PICU discharge, stepped on a rock, and we both bit the dust in the ER parking lot. Luckily, at 6.5 months pregnant, and with Jordan well strapped into her wheelchair, my finger seemed to take the brunt of the fall. But now, almost 2 weeks later, it's just a huge inconvenience to have my index finger out of commission. It's particularly difficult washing hands (keeping the splint dry), picking up Jordan, and typing. Ugh.

And to think, just days before falling in a perfectly flat, paved parking lot, I was ice skating with Avery. Which happens to be her new favorite thing. She and BFF Kate started lessons on Monday, and she cannot wait for Monday to get here again so they can go again. Perhaps Devon will be able to take her again on the weekend, but if not (he has a sore foot), she still has 8 lessons to go this fall with her fancy new skates (thanks to an early birthday present from grandma Linda & grandpa Earl).

The weather has been great, so we went out to the pumpkin patch on Sauvie Island yesterday. I haven't sorted through my pics yet, but I did get these 2 from Kelly last night -- which I LOVE. She's such a good photographer. Aren't they great!! More to come later, when I get a chance.

(photo by Kelly Wood)(photo by Kelly Wood)

Pumpkin Flashback (#1)

2008-10-20T20:19:00.000-07:00

For nostalgia's sake, here are "my pumpkins" in 2007 (at the bottom of the blog entry) & 2006.

Off to the pumpkin patch tomorrow -- stay tuned!

My Little Punkins

2008-10-19T23:01:00.000-07:00

I love halloween, pumpkins, and my girls!

Goodbye, Aidan

2008-10-18T22:54:00.000-07:00

Aidan
(at age 4.5, May 2008)

Aidan & his sister Ariana joined us one afternoon for a playdate at OMSI while Jordan was in the hospital with pneumonia in May.

I'm at a loss for words, for once. Our friend Aidan died in his crib on Monday night, and the world has lost one of the best smiles. My heart is broken, especially for his family. His mother has worked tirelessly for 5 years to give him the best the medical & therapy world has to offer, and even today at the memorial she was sharing her plans to continue her work with other children & families that need extra help to care for their special children.

Having a special needs child can take a toll on families (physically, emotionally, & financially), and really drives home the point that "it takes a village." It's not unusual for children with severe disabilities (like Jordan & Aidan) to end up placed in medical foster care or facilities, as these kids often need 24-hour a day care. There's an actual limit to the amount of care one family can provide, because the reality is that we all have to sleep sometime. I know from experience that a person can survive for months, even a couple of years, on virtually no sleep, caring for a child who is sick, delayed, seizing, etc., but eventually your body & mind begin to wear out. And the only way to keep going is to get some help. In our case Jordan qualified for 8-12 hours a day of nursing care (at age 20 months). In Aidan's case he hadn't yet qualified for nursing or respite care in the home, although his mother was fighting the system tooth and nail for this. A night nurse to watch over him in his sleep, or even just a specialized bed, could have prevented this tragedy. But the (very complicated) system was working against Aidan & his family, and this is a price that no family should have to pay. Never again. I'm going to help his mother fight on for the care our special kids, in Aidan's name!

Seaworld, San Diego, Again

2008-10-15T18:44:00.002-07:00

Avery & I sneaked off at the beginning of October for a mother-daughter get-away in southern California. We met up with friends Kim, Wil, & Jamie in Orange County, then went to Seaworld the next day. When we were visiting in February we found out that the day passes to Seaworld were good for the whole year, so we decided to take advantage of that one more time. And lord knows, Avery can never get enough of "Free Willy" (her name for any killer whale with a bent dorsal fin, just like Keiko from the movie).

Here's Avery at John Wayne Airport, pretending to be the Statue of Liberty -- one of her favorite things these days thanks to her Viewmaster

Instead of a bath on Wednesday night we decided to have a dip in Kim & Wil's pool. It was lovely!

Jamie enjoys a dip, too

Leslie & Avery (Wil skipped the dip in the pool & was on camera detail)

Kim got a swim, too

Showin' the love -- Avery & Jamie are always fast friends

Off to Seaworld, starting with the main attraction: Free Willy -- as Avery calls them (all), although she does understand that at Seaworld they prefer to call them all Shamu

Avery is convinced that all trainers are "Jesse" from the movie "Free Willy"

Ready, get set,

GO!

"Willy"

Seaworld is owned by Anheuser-Busch, so of course they have Clydesdales

Petting the sting rays -- they were very friendly & begging for attention. Their stingers are trimmed with fingernail clippers as they grow, so they are safe to pet

YIKES -- the sharks were scary, but we were safe on the other side of the glass

Aren't seals the cutest?

Feed me, feed me, they begged

Recently Seaworld added a Seasame Street area, complete with kiddy rides. It's a little sad to see it go so "commercial," as the kids got sucked into the area a couple of times and we had to drag them out to go see animals (which they loved once they were out of Elmo's grasp)

Avery would not go near Burt & Ernie, so I tried to go pose with them to draw her up on stage for a picture. No Way was her response!

But, she always has a hug for Elmo!

They could tell I was pregnant, so they wouldn't let me on the ride, and they wouldn't let Jamie on without a parent (even though both were under the 48-inch limit, but Jamie was about 1 inch shorter than Avery. . . .). So, Avery had to fly her Elmo fish by herself!

I know I would have puked if I had gone on the tea cups, pregnant or not

Weeeeeeeeeeee

Miscellaneous Seaworld Videos

2008-10-15T18:44:00.001-07:00

"Free Willy" Videos

2008-10-14T22:57:00.000-07:00

Avery LOVES Free Willy -- in many of these videos you can hear her yelling "Willy" in the background, all the way throughout. When we first got there we sat in the splash zone, at her insistence (Kim & Jamie went for much higher, drier ground). Then, once we were soaked to the bone, she wasn't too excited about it and we had to move up higher. . . . Good thing it was a warm day that day!

Legoland, Carlsbad, California

2008-10-14T22:34:00.001-07:00

What a fun day we had at Legoland (way back on 3 October -- I'm just getting caught up). It's perfect for this age (3-4), and nice & low key for tired moms, after a day at Seaworld the day before (blog coming soon).

Jamie (almost 4 yrs) and Avery (4.75 yrs) playing "freeze" -- they were so excited to keep going, going, going, this is the only way we could get them to stop. I'd yell "freeze" and they'd "strike a pose" until we could catch up.
There was even a little bit of good ol' fashioned hand-holding. . . .
Here are a few of my favorite pics from the day -- kids & legos both
Diggin' for dinos (see video below)
Splash pads are always a HIT!!
Ugh, here was a little fight over who got to go first in the lion's mouth picture -- Avery was adamant that she was "the guest" so she got to go first. I guess Jamie's season pass precludes him from being the "guest" at Legoland -- in her opinion.
After the train ride (video below) they were all smiles again.
Volvo driving (see video below)
A little helicopter ride for Kim & Jamie

Legoland Videos

2008-10-12T22:03:00.000-07:00

A day at Legoland (Carlsbad, California) with Kim & Jamie -- in video

A Big Weekend In Hope

2008-10-11T19:30:00.000-07:00

Grandma Linda celebrated her 60th birthday last weekend. Her brothers Larry & Neil joined the festivities with a trip out west from Ontario (and stayed for over a week to celebrate Canadian Thanksgiving this weekend, too). Grandpa Earl's sister Maureen & her friend Jeff were also on hand from Ontario, and Devon, Avery, Jordan & I were also able to make the trip. Grandma Linda also spent a good deal of time on phone with friends & family calling with wishes, and more than a few neighbors in Hope stopped by to wish her a Happy Birthday as well.

Devon presents grandma Linda with a yummy birthday cake.
Opening gifts, Avery was right there to help while uncle Neil looks on
Aunt Maureen & Jeff
Jordan & me -- Jordan was still hanging in there like a trooper with her cold at this point
Uncle Neil, grandpa Earl, uncle Larry, and grandma Linda
Neil, Devon, Earl, Larry, Linda, & Avery
Then something strange happened -- Avery got an early birthday present from grandpa Earl & grandma Linda -- her own ice skates!! (her birthday isn't until 22 December, but this way she'll get extra use out of them this fall & winter)Now, to try them out -- at the Hope Arena
Funny how she forgot about "skating" once she got a hockey stick in her hand -- she couldn't resist after seeing all the other kids playing hockey during open skate time

Now for the live action videos, again

Unfortunately, Jordan's cold took a turn for the worse on Sunday night/Monday morning, so we left earlier than we planned. Grandpa Earl was going to take Avery skating again on Monday, but he didn't get the chance as we headed for home, and eventually ended up at the hospital that day.

An Afternoon At The Pumpkin Patch, Part I

2008-10-11T18:53:00.000-07:00

I hope this is Part I -- Jordan was too sick to go, and Avery, Kate, & I just needed some fresh air in the sunshine. Hopefully we'll get nice enough weather over the next couple of weeks to go again to our favorite pumpkin patch on Sauvie Island in Portland. But for a quick afternoon jaunt, this one a couple miles from our house in Vancouver was good enough (but boy were they crowded for a weekday afternoon, I thought).

Avery in the hay maze

Kate in the haystack
Kate at the pumpkin slingshot
BFFs on the haystack
BFFs at the hay maze
The haystack, swarming with kids (a boyscout troop in yellow t-shirts)
Tractor rides
Avery's favorite attraction (I had to drag her away) -- Jasper the donkey (although she calls him Tonopah, which is our old burro's name, and who, at ~35 years of age, now lives with my old friend Rami & her horse Jessie in Oldtown, Idaho)
Kate made friends with this nice bunny
Once we got out of the animal feeding & petting area we stumbled on the pony rides. Avery rode Major
Kate rode Ginger
Finally it was off to the pumpkin patch out in the back 40. We got to take a hayride to get there, and we each got to pick a pumpkin to take home.
The end was near when Avery got sad for the (dead) sunflower head that Kate moved away from it's "friends" -- sometimes tired just hits all at once, and with no rhyme or reason. . . .
Hitchin' a ride on the wagon back to the main farm
The wagon loading area
Avery & her gi-normous pumpkin (I could barely manhandle the dang thing) on the wagon ride back. Kate picked a very nice, reasonable one -- but not Avery -- the bigger the better!
An overview of the corn maze. We didn't go, as we heard it takes about 45 minutes WITH the map & no wrong turns!

Home At Last

2008-10-10T20:42:00.001-07:00

Jordan had a good day yesterday (Thursday) and a great night last night, so this morning they discharged her straight from the PICU!! Normally there would be a day or so on the floor, but with a nurse at home it's just as good. We were in the front door by noon & it feels great to be here. I can't wait to get a great night's sleep in my own bed for the first time 9 nights! Maybe I can even sleep in this weekend -- perfect timing!

It was even sunny enough this afternoon (after a week of rain) for a spontaneous trip out to the local pumpkin patch with Avery & BFF Kate. Avery has had a long week herself, and on top of being tired she is being "clingy" for mom. We needed an afternoon out together! It's tough to be happy & healthy and not have the attention of Portland's medical world, let alone your own nurses to care for you each day. It's a good thing Jordan is willing to "share" some of nurse Robin & nurse Lisa's attention each day.

Worn Out

2008-10-09T13:07:00.000-07:00

Jordan is definitely getting better & stronger, but sleeping a lot today -- more so than yesterday. I think all the coughing just wears her out. She's still in the PICU, but they're finally talking about moving her out to the ward (or even home), possibly as soon as tomorrow. My mommy instinct thinks going home tomorrow is a bit unrealistic, but hey, we'll take it if she's ready. Her labs look good, nothing cultured out of her blood, her oxygen sats are okay (could be better, but she's holding her own on room air right now), she doesn't have pneumonia, and seems to have dodged bronchitis. Just a nasty old cold virus!

As for the rest of us, it's pretty much life as usual. Devon gets Avery up & off to pre-school, then works for the day. Yesterday Avery stayed at preschool for the whole day, but on Tuesday and today nana Noma is picking her up for the afternoon. I hang out here with Jordan until ~dinner time, then head home for 6 or 7 hours of family time, then come back to sleep in the old blue chair overnight. It's much less of an imposition on the family when Jordan's in the hospital during the week -- life can almost go on as "normal."

Life isn't too bad for me in the hospital, either. I know that Jordan is getting great care here in the PICU, and the staff has been incredibly nice to me, especially since I'm pregnant. They got Jordan an adult bed so I can sleep with her (we had a great 2.5 hour nap early this morning together), and have arranged meals for me as well (which are not at all bad -- they cater very well to my picky, no-meat palate, perhaps because we're in the infant/toddler area!). And of course, there's always chocolate milk in the fridge. . . .

Same Old Same Old

2008-10-08T00:22:00.000-07:00

Mucus, suctioning, breathing treatments, mucus, suctioning, breathing treatments. . . you get the picture. And lots of sleeping, quietly I might add (thanks to last month's tonsillectomy, but that's a different "Hotel Emanuel" story).

Jordan is doing okay -- nothing major, just a cold (nothing cultured out yet at 24 hours, and her x-ray is still clear of pneumonia). She just can't handle them like you and I, so we're still in the PICU, and she's still getting lots of attention to keep her breathing strong & regular. I went home tonight for some family time with Devon & Avery so I didn't get to talk to the intensivist, but I'm guessing we'll be here for a couple more days.

While I certainly appreciate the level of care she gets in the PICU, I am looking forward to a flat bed (cot) & a private bathroom out on the ward. Having to leave the PICU to use the outside bathroom keeps a 6.5-month pregnant lady hopping! I guess I can't complain too much, I did sleep like a babe in the old-fashioned blue chair the nurse took out of an empty PICU room. They definitely shouldn't have upgraded to the other chairs, they are much harder to get a good night's sleep in . . . .

The Travel Stops Here. . . .

2008-10-06T21:30:00.000-07:00

Avery & I had an exciting trip to Orange County, Seaworld, and Legoland on Wednesday, Thursday, & Friday, then flew straight to Seattle where Jordan & Devon picked us up on the way to grandma Linda's 60th birthday weekend in Hope, B.C. Everywhere we went were "sicklies" -- seems a nasty cold has been circulating the west coast. Avery had a cough and a runny nose, as did our friends Kim, Wil, & Jamie in OC. And sure enough, by the time Jordan & Devon met us in Seattle Jordan was coughing non-stop!

But we persevered. We had a wonderful weekend in Hope with birthday girl grandma Linda, grandpa Earl, Linda's brothers uncle Larry & uncle Neil, Earl's sister & friend aunt Maureen & Jeff, and great-grandma Mavis (who turned 91 herself just today). Jordan coughed and sputtered and needed alot of suctioning, but she was holding her own.

Until early this morning . . . . We ended up cutting our trip short and heading straight home with "little miss blue lips." It was clear that Jordan was not breathing well through all the mucus, and as we drove we decided that we didn't just need to go home, we needed to go to the hospital. So, we waved at the house from I-5 as we drove another 10 miles past it into Portland tonight and checked Jordan in at her favorite children's ER. Her oxygen sats were low enough (83) to get her straight to a room, and combined with her blood gases (pH=7.29 & CO2=71) she's now on BiPAP and awaiting a spot in the PICU for the night. She's well hydrated and still tolerating her food, and they were able to start an IV fairly easily, so it could certainly be worse.

I guess the good news is that I'll have some time to get my photos organized and a couple of blogs posted about our recent adventures over the next day or two -- if I can get any sleep in the PICU, that is (no beds, just chairs that fold out almost straight).

No News Is Good News

2008-09-30T21:38:00.000-07:00

It's been awhile since I updated, I guess because nothing too exciting has been happening. Jordan is healing well from her tonsillectomy. She's still not snoring, gurgling less, and breathing like a champ. Unfortunately both Avery & Jordan seem to be getting a bit of a cold, so we're hoping it doesn't blossom into something big.

Tune in again in a couple of days as Avery & I are off on a great adventure early tomorrow morning. . . .

Watch Out Dorothy Hammel

2008-09-23T23:49:00.000-07:00

It was rainy on Sunday & we needed something fun to do -- so ice skating it was. It was Avery's first time, and after 2 hours she was doing great & wants to go again soon! You should have seen her when she was holding both of our hands -- we were flying around the rink (and I was desperate not to fall: 6 months pregnant, camera around my neck, video camera in my back pocket. . . .).

A hug before going up the stairs to the ice -- it was a slow walk up the 8 steps. . . . Starting off she was pretty adamant about holding onto the wall Holding onto dad's hands while she get's her "ice legs" Trying it on her own She didn't even mind falling every so often (which, we kept telling her, is good for learning!)
Now, for the live action -- the first few minutes

After about 1.5 hours

Changing A Button

2008-09-23T23:33:00.000-07:00

Not very "theatrical" -- next time we'll stage it a little better -- but in case you're interested, here's how to change a g-tube (in this case a Mic-Key Button)

Too Quiet!

2008-09-23T23:02:00.000-07:00

Totally typical! After a couple of years of not sleeping (well) due to Jordan's snoring, now I can't sleep because she's too quiet. Since the tonsillectomy 10 days ago Jordan has been breathing better than ever, gurgling less & less, and sleeping in complete silence. I find myself up every couple of hours with my ear to her mouth, checking to see if she is breathing. I guess I'll have to get used to this & learn to sleep as solidly as she finally is (~10 hours straight each night!).

So far the tonsillectomy has been completely worth it -- even though it took a scary turn the day after the surgery. I just hope the good sleeping & breathing lasts. . . .