Prom In The Cul-De-Sac

It was prom night for neighbor Emma last night, and too much excitement for us to resist. After a few minutes of thinking about it, I convinced Avery to put on her Easter dress & go pose with the waiting, and waiting, and waiting limo (neighbor Marjory's idea -- a good one!). The driver was happy to let Avery pose for some pictures, and even let her crawl in the back & take a balloon to play with. Soon neighbors Sean & Sarah were in on the fun as well.

Finally, as Emma & her friends & their dates were getting ready to make their big appearance, we sat on Sean & Sarah's steps to watch the activities. The balloons helped pass the time.

When the girls finally came out in the fine dresses, Avery & Sarah were invited down to take a few pictures with them. There were lots of roses to go around, so Avery & Sarah got to keep theirs, too.

What a fun little evening in the cul-de-sac. Emma reports to have had fun at prom, too.

Emma and the girlsSean gets to smell the roses, too!

Good Riddance!

Today was Jordan's first monthly appointment with her orthopedist to assess the usefulness of the Rhino brace. After we explained to him how much we all hated it, especially Jordan, who was actually moving it around & bending it so it was never in position, he told us we could stop using it. Hallelujah!! We left it in the garbage can in the exam room! He does seem a little worried about her popping her hip out of socket with her arching, but obviously the brace was not stopping her from doing that, so we will move on and try something else.

And that something else is Botox, which is now scheduled for 25 June. I can't wait to see how that works. We even talked to a parent at Shriners today that said Botox has made a huge positive difference with her son, so I'm hopeful.

In other good news, Jordan was fitted for her wheelchair last week & it has now been ordered. No word on how long that will take, but the worst case scenario seems to be 3 months, and hers will be pretty standard so it should be less than that. In the meantime she is going to get a "loaner," which we should get delivered as soon as early next week. Now that the brace is off we have no reason to leave her "lying" about the house. She was sitting up like a champ already today in her Kid Kart to and from occupational & speech therapies (although she's really outgrown that, and it's hard to keep a "noodle" seated without all the special tricks her new wheelchair will have).

Positively Jordan

Monday was a great day for us for a strange reason I suppose. Jordan had a follow-up appointment with her physiatrist, who hadn't seen her since October. She noticed right away that many things had changed since October -- and all of them for the best.

It's difficult for me to see changes with Jordan, since changes happen so slowly. In fact, most days feel a little like Groundhog Day around here. But, after 7 months, apparently the changes were obvious to the physiatrist. She noticed that Jordan looked at her, and turned her head to her, saw her purposefully moving her hands around (and toward her mouth), and thought she looked healthy with her skin, her height, & her weight (and was glad to hear we are feeding her a blenderized diet of real food instead of formula).

She was excited & enthusiastic and had many ideas & instructions.
1. Get her a new wheelchair so she can sit up -- and get it now (she is even going to try to get the wheelchair company to loan us one until hers arrives within the next few months).
2. Use Botox on her back muscles and her left calf to force her muscles to relax for awhile (one treatment usually lasts 3 to 6 months). This might slow the progression of her scoliosis, and also help keep her from arching.
3. Get her more vision therapy!
4. Get her switch toys. Any battery operated toy can be converted to a switch toy, so she can control it herself.

Later in the day Jordan had appointments with her teacher & her PT, so we already got the ball rolling on the vision therapy & the switch toys. The order went in for the Botox, and this morning we were finally able to order Jordan's new wheelchair, the FAST. I can't wait until she gets it, and doesn't have to lounge about the house all the time in her Kid Kart that's too small & doesn't offer enough support.

Now, we just have to get her out of that ridiculous hip brace. Back to Shriner's next Wednesday, and the orthopedist is going to have his work cut out convincing me that she needs that stupid brace!

Welcome Baby Noah

On Thursday our friends Heather, Sam, & Katie welcomed a new addition to their family:

Noah James Morley Sarmast

(6lbs, 10oz & 18 inches)
(photo from the Sarmasts)

He was a few weeks early, but happy & healthy all the same. On Saturday Avery & I sneaked over for a quick peek of the new man of the house. He's a cutie!

Congratulations!

Sunny Days

I guess the week has come and gone. Jordan is pretty much recovered from her pneumonia, and life is getting back to normal.

This weekend we did "divide & conquer" as we didn't have a nurse for Jordan and it was too hot to take her out & about. Devon & Avery walked down to the Hazel Dell parade on Saturday morning, then did yard work together for most of the rest of the weekend. Unfortunately, not being used to the sunshine, both Devon & Avery had a bit of a lobster look going. . . . OUCH!

Here are a few favorites from the parade

Here comes the band -- which frequently caused Avery to put her hands over her ears.
Apparently she only got excited when she saw the horses

Meanwhile, Jordan & I enjoyed the cool air conditioning while I finished up some projects inside the house. I had to get ahead on a few things before Devon leaves us, and the impending rain, for a week in sunny SoCal. Typical! He'd rather be here in the rain. . . .

Jordan is a good project partner, when she can stay awake

Catchin' Up

Well, being home has certainly kept us busy. Sleep exhaustion ruled the weekend -- no matter what they say, hospitals are not restful places, especially if you're the parent. So Mother's Day on Sunday couldn't have come soon enough. I got to sleep in, had a wonderful breakfast in bed (with Avery who thought that was the coolest thing ever, so of course she joined me), and then I kicked her out and slept a little more. The rest of the day I just tried to relax and catch up a bit from being gone, then we rounded out the day with a dinner at the Outback with nana Noma.

Monday & Tuesday came and went in a blur, but today was the killer of the week. Thankfully it's over. We started off with a pediatrician follow-up at 10:15am in Portland, gastroenterologist at 11:00 (at a different Portland hospital, no less), speech & occupational therapy at 1:00pm at the hospital here in Vancouver, then back to Portland at 3:00pm for a meeting with the dietician. Then we zoomed home, dropped Jordan & Robin off at the house, grabbed Devon, and went to the Vancouver Early Childhood Center to see where Jordan will be going to pre-school after she turns 3 at the end of the year. Well, that's the idea, but I'm really not sure how Jordan's going to manage pre-school when the time comes. But, we might as well start gathering information about services in preparation, as she'll no longer be eligible for Early Intervention after she turns 3.

On the home front, other than some unexpected barfing, Jordan is getting better and stronger after all that pneumonia. Just in time for the good weather (finally). It's suppose to get up to 98'F (38'C) on Friday -- I CAN'T WAIT!!

. . . . Jiggidy Jig

That's right, we're all HOME!! Devon stayed the night with Jordan so I could come home and sleep in my own bed last night, and then he surprised Avery & I by pulling into the driveway at 9:30. I was hoping she would be coming home today, but I wasn't expecting it to be that early.

She's still "juicy" and coughing, but she passed the test yesterday and last night, so now we know what we need to do at home to make sure she keeps getting stronger and better.

All-in-all it wasn't too bad: 9 days total, for Jordan, with pneumonia. She's had stays that long for colds.

Now, to bury out from the stacks of mail, laundry, dishes, dust, ugh! How do things get so out of hand at home when we're not even here to cause it?

You know Jordan's almost back to normal when she's back into her banana. After 8 long days without it, she was pretty happy to have some banana time on her tummy this afternoon. And she did very well with her oxygen saturations during the banana chewing time, too -- she's definitely on the mend.

Hopefully she'll make it through the night like a champ, and get discharged in the morning, although she was teasing us a bit as she went off to sleep tonight. I kept telling her we were on the 12-hour countdown and not to mess it up! Fingers crossed.

Super sick 6 days ago. She wouldn't even look at the balloon, was on forced, humidified oxygen, and was raging with fever (hence the no clothes style).

Fun Stuff

It's not all doom & gloom hospital stuff, and I try to keep Avery busy & having fun, even if it isn't necessarily with me. On Sunday afternoon Sean & Sarah invited Avery over for awhile to jump on their super-fun trampoline. On Monday Avery got to play for the afternoon at Kate's house, and was particularly interested in zooming along the sidewalk as fast as she could on Kate's bike (which makes me long for a flat sidewalk neighborhood, oh well)After the afternoon at Kate's, Avery & I went to the hospital to see Jordan for awhile, and slipped out to he nearby Alameda pub for dinner on the sidewalk in the fresh, spring air. As you can see, Avery is still very much into hopping & jumping, even a couple of weeks past the MDA Hop-A-Thon they did at school in April. Avery also likes to "hop" up into bed with Jordan for some snuggles, and for some nursing attention, too.

On Wednesday, Avery came to the hospital with me for awhile, where we planned to spend a couple of hours doing the Child Life Ladybug Garden project. There were 7 ladybug projects to do, but unfortunately, they each took no more than 4 minutes, so we were outta there in just about 30 minutes.

A little while later we picked up Ariana & Aidan, and their mommy Heather, for a trip to see the dinosaurs at OMSI. Ariana & Avery are so alike in so many ways it's eerie. They're definitely both tomboys, and we could hardly drag them away from worm collecting in Ariana's yard to go to OMSI. Once there they were both fascinated by the dinosaurs (skeletons & robots), digging for bones in the bone pits, playing in the ecosystem stream, and of course, checking out all the creepy crawly things, too.
Aidan thought the girls were pretty funny, he was very entertained watching them. He was being a ham for the camera, too.
The girls put on a mongoose puppet show for us, too, although it really mostly involved waving the animals around.
Finally, the creepy, crawly things (okay, they have a whole room of them. The girls couldn't be dragged out, finally the museum closed around us and we had to leave).
Of course on Tuesday and Thursday after an afternoon of gardening with nana Noma, there were swimming lessons. (Unfortunately I didn't get video of her swimming on her tummy, which she can actually do by herself for a little bit)


And on Fridays it's gymnastics time at the end of the day (she's in the middle distance, in the pink & purple leotard).

After a work out like that for 45 minutes, Avery was pretty excited to go to Sweet Tomatoes, her favorite restaurant (a giant salad bar) with Devon for dinner tonight.

With all of this it doesn't seem like it should suck to be the "healthy" kid, but it's still not fun, either, to have mom & dad's attention spread so thin for 9 days.