Speechless

Yes, we're still here and plugging along. Things have been pretty intense & busy lately, and even if I had time to blog, I'm not exactly sure what I would say at the end of each day.

It has been glorious having a nurse for Jordan these past few weeks. It's given me a chance to catch up on a few things of my own, but, most importantly, spend some special time with Avery to do things like go to OMSI, a play date with Bonnie, and even take her along on errands in the afternoons. Since we don't have Jordan's Medicaid & Medically Intensive Program stuff in place yet (it can take months), we might run out of this benefit soon. We're trying to take advantage of all the nursing help we can get.

Devon was gone to his office in California for most of last week, so I was extra busy with the girls. In addition, I've been very focused on my father. He's very ill, and we're all trying to figure out the best ways to help him and the family. As you can see on his website (link on the left, too), I've been busy building the website, planning a benefit dinner & 60th birthday party, and getting the "Avery & Friends Children's Cookbook" ready for publication.

I seem to recall having a long & exhausting October last year, and this year it's building up the same. So bear with me, I haven't given up on the blog, I just might not have the time or the right words over the next month or so.

In The (Gary) Driver's Seat

I've spent a lot of time lately on my blog talking about my dad & his health battles with cancer. So, over the last few days I've been preparing a website dedicated just to him.


In The (Gary) Driver's Seat, Racing For A Cure Against Cancer

Please visit the web site frequently to keep up on his health, our family activities and fundraisers, and to send Gary your good wishes. Thank you everyone for your continued support & prayers.

Not Much News Here, Much News To The East

We've had a pretty typical weekend. Jordan is still a bit sick ("Juicy Joey"), and has had quite a few bigger seizures than she's had for awhile. She screams a funky scream at the end, which is really quite eerie. So far in September we've had to cancel 2 appointments with her neurologist because of her hospitalizations, but I'm hoping he'll be able to get us in soon. I just hate to see those big seizures, even though I'm getting used to the smaller ones at this point.

Avery had her typical busy weekend. Gymnastics on Saturday morning, and again on Sunday morning because she got moved up into the next level. Then on Saturday afternoon she had 2 birthday parties to attend: her classmate Brandi, and our neighbor Sarah (who turned 3). On Sunday she convinced Devon to take her to the Firstenburg center for swimming, which was helpful to me since I was trying to sort out and load up the toys I cleaned out of the playroom last weekend.

Unfortunately, I missed most of the fun on Saturday & Sunday, because I was trying to get my weekend chores done and at the same time come to terms with my dad's current health situation. On Saturday he had yet another mini-stroke, this time on the right side. He's doing well already, but there is a lot of confusion about his care & what should happen next. The neurologists and cardiovascular docs don't want to deal with his vascular issues until his blood cancer is under control, while the oncologists are not sure what the can do until his vascular issues are taken care of. And the rest of us are trying to figure out how to get him Seattle for a follow up at Fred Hutchinson Cancer Center. He's having some very serious claustrophobia/anxiety issues that make us all concerned about getting him across the state in a car, or an airplane. We're all working together to try to figure this all out.

His treatment during the trial study for MDS didn't completely cure his cancer, although it did have a positive effect on it. However, the next treatment on the plate is a bone marrow or stem cell transplant, and we're all worried that he won't be able to handle the 4 months in isolation. But, like I said, before we can sort out all of that, we need to get him to Seattle. . . .

We're Back!

Finally, we're home. Only 72 hours this time, phew. Not too bad. Jordan is doing better, but still weak & sleepy, and still poo-ing like a maniac. We're just wondering where it's all coming from, but getting it all out seems to be making her feel better.

And to top things off we got to come home to nursing! Yippee. It's been a long week, and we're happy to greet the weekend.

Doublating?

Well, I don't know if it's "doublating*" or one-up-manship -- but every time Jordan heads to the hospital these days, so does my dad. He called this afternoon to say he'd gotten another helicopter ride (I think that's ~5 since last November). He had a minor heart attack last night. Last time Jordan was in the hospital he had a small stroke. Of course these are bad enough by themselves, but with his bone marrow/blood cancer he can't have the usual treatments. We're all just hoping he'll get off this crazy bad health roller coaster soon!

As for Jordan, she seems to have a bit of a stomach bug, and is still pretty weak. She started back on pedialyte this afternoon, and seems to be tolerating it well, but she won't be coming home until she is able to eat normally again. It's nice that it's not a respiratory issue (like pneumonia, which we were worried about), but it isn't fun to see her so wiped out all the time. We're hoping she gets off he crazy roller coaster soon, too!

So, Jordan wins on number of days in the hospital, and grandpa Gary wins on number of helicopter rides. Avery is a little jealous; she LOVES to watch the helicopters come and go from Emanuel. Hopefully one day she'll be able to ride in a helicopter doing something she loves -- like fighting wildland fires or collecting rocks in the Yukon (just like her mommy used to do). I definitely do not suggest flying around in helicopters while lying on a gurney, you'll miss the awesome view!

*Doublating, if you missed that blog post, is Avery's term for 2 things happening at the same time, like when you're swinging in unison, the van doors closing at the same time, or taking a bite of cereal together at brek-raf (breakfast).

Catching Up A Bit

We managed to finish up the playroom this weekend -- well, until late on Sunday night when I noticed that there was still paint tape around the window. . . . Oh well, maybe next weekend. It's so much more spacious now.

Out with the old, in with the new -- can you tell which is which? The new carpet is the long rectangular piece, and the old carpet is the square below. That's what happens when you buy remnants from the same store -- even 10 months apart. Getting ready to install the carpet. . . . . . with a little help from Avery

Yippee -- we're done! I'm so happy I could do somersaults!

Re-organized for more roomMaking the most of the room! Devon & Jordan catch up on the news of the day

On Monday the girls and I took a walk around the neighborhood. It certainly feels like fall these days. As we walked past Avery's (& nana Noma's) favorite tree, I decided to help her up in it. She loves to look at it, but wasn't so excited about sitting in it. When you can't get to the fair in Minnesota, the fair can come to you. Thanks Kelly-Ann (& Grant & Linae) for the awesome box of fair fun! Avery LOVED it all, and even made me wear the second set of John Deere antlers today while we were running errands. Too silly!

Same Old Same Old

Wouldn't ya know it. No nurses for 4 days, and now Jordan's back at the Hotel Emanuel! Bleck. She was doing okay (despite the ear infection) on Saturday, but on Sunday & Monday she was looking pretty pale & acting very lethargic -- never a good sign. And so it began about 01:30 am -- the coughing and the retching. By noon I had her at the pediatrician's office, and she wrote all the orders there. We walked onto the floor & checked in in record speed. Even nurses I didn't know remembered Jordan (from before her discharge just 12 days ago). Her ped was worried about a bacterial pneumonia, but so far the results of the x-ray, blood work, and urine analysis don't suggest an infection (perhaps the Amoxicillin for the ear infection was doing it's job). So, now she's NPO (no food), and we're going to give her GI system a break to see if she can get some strength back. She's so pathetic when she's this sick she doesn't even seem to seize, or squirm due to her hypersensitive sensory system. Hmmm, it's hard to imagine wanting those things back, but I do!

Busy, As Usual

This whole week has really been different. It's such a blessing and a relief to have some nursing care for Jordan (who's on Amoxicillin for an ear infection, but is otherwise doing fairly well). I went to a girls' night hot tub get together on Wednesday night, the the Landau Associates new office open house on Thursday with Devon, and Friday night we had a date & went to see Body Worlds 3 at OMSI. It was pretty cool. After we left Devon's first comment was "If I learned one thing it's that there's not much to eat on a human. I didn't see any good lookin' steaks. I guess if I had to I'd go for the thigh and the butt." Lovely!!

I've really tried to take advantage of the nursing care while we have it. I definitely don't use it to sleep, there are too many other things to do! Like painting & remodelling mostly.

We decided on Wednesday that we needed to replace the 10-month-old carpet in the playroom, thanks to an accident the cats had last December while we were on vacation. We just couldn't get the smell out. I bought another remnant from the same store, and was only mildly surprised to find that it was the exact same carpet -- exactly. So, you can't even tell the difference. Devon decided that he could install it himself, and, by golly, he did! He rented some apparatus this morning, and had the carpet installed in time to watch the USC/Nebraska game with Galen at 5:00pm.

Meanwhile, since I couldn't get in the playroom to paint in there, I decided it was time to finish up the mudroom painting once and for all. Phew! Glad that's done. Just some minor paint touch-ups in the playroom, and then it'll be time to move the construction equipment downstairs. Lots to do down there with the bathroom ripped out, the hallway tile sitting around waiting to be installed, and all the walls textured & primed, but not yet painted.

I just don't know what I'd do if I didn't have a thousand things to do around the house. Sometimes it makes me frustrated & anxious (because it never ends), but mostly it's a distraction (as Jaynie pointed out the other night). I think she's right! Besides, I've never been good at idle time.

Avery had a busy day today, too. She started gymnastics this morning and was a regular Mary Lou Retton (unlike last September, when she wouldn't do anything & we had to switch her to swimming lessons, which she didn't really like, either). Then she & nana Noma went to the Farmers' Market & playground (like they do every Saturday morning), and at home she "helped" us with the painting & carpet. We finished off the day with a trip to JJ Jump, with Kate, Sarah, & Sean. Finally she's at the perfect age to run off & play with her friends, and not need an adult to help her navigate. There was one slide that she couldn't quite get onto by herself unless she took a run at it -- it was hilarious to watch. Sometimes it took 3 tries, but she always got up on it in the end. Jordan slept through almost the entire 1.5 hours, blasting music, disco ball, & all.

As usual, it's been a busy week!

Doin' A Happy Dance

What more can I say: We were notified today that Jordan has qualified for a Medicaid Waiver in the state of Washington. This is HUGE. I was almost in tears as the case manager told me the news.

The next step is to apply for the Medically Intensive Program, which will help us with more permanent nursing care for Jordan. And let me tell you, I'll take every single minute of nursing care I can get. Tomorrow Avery, Jordan, the nurse, & I are going to a park, and I can't wait! It is almost impossible for me to take the girls to the park by myself -- I can't play with Avery & care for Jordan at the same time, so both girls are left wanting & needing more.

We're breathing a huge sigh of relief and dancing all around.

A Warm Welcome To A Southern Belle

Deborah is joining the craze. Welcome, and we can't wait for more!

Musings From A Life Of Love

(this is also now listed on my Links, to the left)

All About Avery

On Saturday, 25 August, Devon, Avery, & I left the hospital together for a picnic at Washington Park in Portland. We tried to really enjoy ourselves while playing with Avery at the park, but it was very difficult. It was the first time that the three of us were on our own anywhere, since Jordan was born. Many times the four of us went out together, but more often than not it was 'divide & conquer': one parent out with Avery, one at home with Jordan (even if out just meant out in the yard). Devon and I both suffered from the feeling that that was what our lives would feel like without Jordan someday -- not a happy feeling (despite the fact that going out with Jordan or 'dividing & conquering' are both extremely difficult in themselves).

Saturday at Washington Park with Avery

Since Jordan was in the hospital for 18 days (and I got used to not being at the hospital 24/7) which was followed by the in-home nursing we are currently enjoying, Avery has really been reaping the benefits. I felt terrible (& terribly guilty) leaving Jordan home with the nurse, but at the same time Avery & I took advantage of this and spent the afternoon at the Oregon Museum of Science & Industry (OMSI) & the library.

At the fake beach, with nice, clean, dry sand

Giving a puppet show to anyone who would watch. Her imagination is really taking off these days. . . .

Shopping with Troy, the aggressive checker

Let's play chipmunk & hoard acorns for the winterBuilding her own forestEven the infant area was fun -- and why should those babies be the only ones with a ball pit anyway?

Gotta get some water play in

This last Saturday, in 'divide & conquer' mode, Devon & Avery scouted for new cabinets for the downstairs bathroom (even though that's probably months away), went to for a hike at Horsetail Falls, & then finished off the day at the Vancouver Sausage Festival for dinner & carnival rides. I hung out at home with our new nurse, and started cleaning out the playroom in order to repaint the blue & touch up the off-white (it was also a great time to high-grade the toys, since Avery wasn't around to hinder the process). We slapped this room together so quickly last fall that a lot of details, big & small, were brushed aside. Time to take advantage of the extra hands and get that room finished up once and for all.

Where's Avery? This game could take a long time. . . .

There she is! Phew, daddy found her pretty quicklyGood thing there was a female there to read the map
This is even cooler than looking at the map

Tape & plastic, again. Seriously, it's never-ending in this house.

And due to the duress we were under last October & November we ended up with a non-matchable blue -- so I had to repaint the 2 walls entirely. Oh well, at least it was only 2 walls. I like the new color better, but Devon liked the old one. Believe it or not, these two colors were as close as we could find on swatches.

A Saturday Tradition

Off to Farmer's Market on Saturday morning, an Avery & nana Noma classic. They buy an apple and a bag of popcorn, and finish it off with play time in Esther Short Park. Aunt Jill, visiting from Alaska, was able to join them last weekend & took these pictures.

Double swinging with aunt Jill

One Last Look At Emanuel

Avery came to hang out with me and Jordan on Wednesday last week (Jordan got out Thursday morning). It was a lovely almost-fall day, so we spent a good bit of it in the hospital garden. Here she's giving a silly cow (covered in tiny glass tiles) an apple.
Avery's not convinced this freakish thing is a donkey, like the sign says. The tin man towers over the yellow-brick road area
Watering the plants with the ??? -- what is that animal?
I really need to get her a shirt that says "I like them that way" -- yes, she always wears her crocs on the wrong feet! This is the silly cow that greets us as we get off the elevator on the pediatric unit. Avery stops to give it an apple every time she walks by. Snuggles with aunt Jill & sissy Jordan.
A late night at the hospital