Stripes & Solid Orange

Avery's cute new rain gear!

(Thanks Kelly!)

Avery's very into stripes this season.

Boots, mittens (pastel) & fleece (primary colors, under rain jacket), all in one outfit!

Avery standing on the pumpkin she & Nana Noma grew this year in the garden. Soon after standing on it and trying to move it all by herself (with not much luck), she decided it was time to play Mr. Pumpkin Head with it, too. Better late than never, I suppose.

What A Mess!

Two new rooms out of a garage. What a deal! I can't wait until they're done. The new entryway/pantry.
The house is almost un-manueverable with stuff right now. Can't wait until this is over, but it's much less traumatic than the kitchen & bathroom remodels!
Yes, that's a freezer full of breastmilk right in the living room. The new playroom/dining room.

A Weekend With Betsy

The road to Latourell Falls, in the Columbia Gorge, Oregon Hiking up to the falls. Devon carried Jordan the whole way. It hurt my back just thinking about it. Jordan enjoys the ride.Avery pauses for a couple of minutes at the first viewpoint.A view from farther up the trail.A well deserved break under a nice big tree.We made it, and Avery walked all by herself all the way up!These leaves were huge! (Sorry no scale, but trust me, they were big.)Avery bums a ride for about 30 feet on the way down, after seeing a spider on the trail.
At Vista House, nearby, for another look over the Columbia Gorge.
Betsy & Avery get some final shots at the train station, before Betsy headed back to Seattle & on to Calgary on Monday. Avery started sobbing hysterically when the train started rolling away. "She's my best friend, and I miss she [her]" she cried for about 15 minutes. I guess we'll have to head to Calgary soon to visit our friends there.

UCLA in Pics

At SeaTac. At least someone is sleeping at this hour of the morning. I wished it was me!

Patterson Lake, Washington. Looking down from the upper portion of the road up to Sun Mountain. How does the waiting room at UCLA Medical Center have a painting of an insignificant little lake in the middle of nowhere Washington? Why was I there to see it? Once again, small world.

Getting her hooked up for an EEG -- fast. This one lasted almost 48 hours, and confirmed that she was not having tonic seizures. Phew!
Don't touch my head, Jordan screams, but they just ignore her and keep going, at record pace I might add.

Not one single electrode even wiggled loose over 48-hours. They sure know how to anchor those things.

Finally, some peace and quiet.

Hooked up for an EKG, too, during her PET scan and during the pyroxidine challange.

Uhhhh, does oxygen really help if you aren't even breathing. Jordan ended up not tolerating Propofol for sedation, despite the overwhelming desire for the 3 anesthesiologists we met with, caused Jordan to either stay away, or sleep so deeply she wasn't breathing. Seems like a problem to me.

One more time, into the PET.

We make due in the hospital, even if that's bathing in bed in a dishpan. And believe me, she needed it! She was barfing and pooping everywhere, and I hardly knew which end to attend to. Sedation can make one nauseous.

Hospital bed 1-2-3:

Believe me, I've slept on worse!

In Like A Lion -- In November?

It was a gorgeous day, although a bit chilly. But that sounds like the last of the gorgeous days. Rain rain rain, here we come! Oh well, winter was bound to come soon enough, and we did have a nice indian summer.

We were so busy we hardly noticed the weather, unfortunately. In a strange twist, it was actually Avery who went to the doctor today. The eye doctor, that is. She seemed to be rubbing her eyes, particularly the left one, quite a bit. So I thought I would take her in for an all purpose exam -- to see if she had a scratch on her left eye, to see if she could see okay (considering Devon's prescription), and, since we were there, might as well have a look for genetic or metabolic diseases (many can be seen in the eye). She wasn't happy about it, and tried to convince me on the way there that you need to be "30 and a half" to go to the eye doctor, but since he was a pediatric opthamologist, she didn't convince me. She did okay during the exam -- not great. She refused to speak during the eye chart test (cake, horse, duck), but it didn't matter. They put 2 sets of drops in & dilated her pupils, so the doc could evaluate her vision anyway. Let me tell you, this was excrutiating. She did NOT want drops in her eyes, so I had to hold on tight. The results are that her eyes are perfectly healthy, and no genetic/metabolic issues, either. Phew.

Then it was off to run errands with mommy. I returned about $50 worth of blank DVD+R/RW. We just can't seem to get our ILO DVD recorder to recognize any blanks, and I couldn't bear to keep opening worthless package after package, $20 at a time. Suggestions welcome.

Then it was off for a lunch of pizza, then a ride on the carousel, and of course, an ice cream cone. Today she picked bubble gum, and it actually matched her sweater, thereby minimizing the stains I need to "Shout Out" tonight. A few more errands, and then home to get her bangs trimmed (by me!). She did a pretty good job sitting still, but she still seems terrified of the scissors on her forehead. I did my best. It's been a year since I attempted that, and great leaps have been made. Nana Noma was here to help distract, but even that wasn't quite enough to get her to sit still completely.

Then I had to catch up on some Jordan stuff (calling pharmacies looking for dietary supplements, scheduling appointments, etc.), and as soon as the phone is in my hand, the show is on. Avery actually seems to be jealous of me talking on the phone, instead of paying attention to her. Just as I was on my second to last call of the day, Avery lost her balance while absolutely mauling me on the couch, and bam, a** over tea kettle right onto the floor. Then I had to keep her from falling asleep, afraid that perhaps she had a concussion. Froggy movie (Leap Frog Word Factory) seemed to do the trick to keep her awake, and make the ouies go away, too.

Then there was the incident with the oven. I found 2 of her toy foods (a hot dog in a bun, and a piece of corn) melted to the floor of the oven when I opened it to put my baked potatoes in. Apparently she put them in there to cook while she was making me "dinner" a couple hours earlier. Daddy managed to scrape them off, and Avery promised to never play in/with the oven again. Boy did that stink at 450'F! Avery's advice to Devon while he worked away:

1. It's okay, it will dry.
2. Nevermind.
3. Oh, just forget about it.

She's just about always got somethin' to say (unless you want her to talk, then she's suddenly shy & quiet! What is that?!?!?)

Straight into the bath after this shoulder position vomit!
Jordan has been a bit barfy the last couple of days, and pretty crabby this afternoon & evening. However, she seems to want to be sitting UP, with her head cocked wayyyyy over to the right. It's the only position she's happy in, and she' getting a bit of a neck workout with it, so that's okay I suppose. I really hate it when she's crabby, since I really never know why (except when it's ACTH). I put new straps on her TumbleForm seat last night, installed her new carseat in the Pilot, and gave her new stroller a good bath, so now she should have lots of places to be mad about sitting in. She'd always rather be held. That's okay, I really don't mind holding her if it makes her happy, and neither do her grandparents. She certainly gets alot of holding most days.

I'm getting down to some of the last things on my big ol' list, and the spare room is getting ready for some paint soon. This weekend it sounds like. YIPPEE!!

The End Of October

Phew, finally we have survived the month of October. I knew it was going to be rough, and I'm glad it's finally over.

I'm very behind, and having a hard time catching up. Chaos rules. So, what else is new? That's life, eh? I have a huge list of things to get done, soon, like sorting out things with the insurance company, getting Jordan's new carseat installed, cleaning the new stroller, fixing her tumbleform seat, going to feeding clinic, physical therapy, and getting more lab work done. Okay okay, you get the picture. Jordan's life certainly keeps me busy!

I got home very early on Saturday morning, then slept a good part of the day (I stayed up all night at the hospital with Jordan, and at LAX getting home). But, I did get up in time to get unpacked before our friend Betsy arrived for a weekend visit. It has been 2 years since we have gotten together! Way too long. We did lots of catching up, went on a short hike above Latourell Falls (Avery walked all the way up & down all by herself!), and took in another scenic view at the Vista House. Betsy even took Avery shopping in northwest Portland while Devon, Jordan, & I went to feeding clinic on Monday. Obviously Betsy made a BIG impression on Avery; she sobbed for 15 minutes after the train started rolling away Monday afternoon. All the way home in the car: "But I miss Betsy, and she go-ed," "I want Betsy to come back, she's my friend." She was sooooo bummed, it was incredibly sad. So Betsy, please come see us again as soon as you can!

Today Jordan had her labs drawn & went to physical therapy. It all went well: blood on the first try (for nutrition background & supplementation), and she was working hard on lifting her head up for Katie today. She is a bit crabby, though, and seems only to be soothed by being held and also by having her gums rubbed by my finger (instead of sucking on my thumb). Seems possible that she's getting new teeth, but I haven't been able to see or feel any yet.

As for supplementing her diet, she's getting just the right amount of calories, but now, at this age, she needs more protein & other nutrients, as well as vitamins, and minerals. The idea is that with a boost in these things, perhaps her muscles will work better and she will get stronger. I sure hope so!

On the home front, the new rooms are progressing. Devon picked doors today, the rooms were spray textured, and next on the list is finding paint. Ahhhh, so many colors to choose from.

Halloween has now come and gone, almost unnoticed. This is weird for me, usually I LOVE halloween, especially carving pumpkins, but it just didn't happen this year. Avery decided she would be Elmo this year (a costume she wouldn't wear last year), and Jordan was a ladybug. However, it was too cold for Jordan to join Devon & Avery (and neighbors Sean, Sarah, & Melanie) for a quick trick-or-treat trip around the neighborhood. Avery won the "funniest costume" at her daycare Halloween Party, and was so honked up on candy, cupcakes, cookies, & lollipops by the time she got home, she was totally out of control. Thank goodness that only happens once a year!

Yes, I have some pics to post, but I'm behind on that and will work on getting them up soon. They're more fun than my ramblings any day. . . .

Happy November Everyone!

Back & Forth

Finally home from LA. We were delayed from our planned Thursday arrival, due to rescheduling of her MRI & MRS. Devon made it home LATE on Friday night, and I was at PDX by 8:30am the next morning. Phew!

We had a frustrating & annoying day at the hospital on Friday trying to get Jordan's MRI & MR Spectroscopy. They made her quit eating at midnight in case she got moved up in the schedule (yeah, right, how often does that happen! I argued with the doctor). Poor thing, she didn't get started until until 4:30pm. Then, I had to ARGUE with 2 anesthesiologists to stop them from using Propofol to sedate her. The PET scan anesthesiologist had an impossible time with it on Tuesday, and wrote quite clearly on her chart that should never have Propofol again. I argued long and hard with the first one, until he turned it over to yet another doc, and she only agreed to use general after she found that the tests would take close to 2 hours. Maybe they own stock in the company that makes Propofol -- otherwise I don't know why they were so adament about using it. Oh well, whatever, it's over now, and the tests went well.

The doctor called last night with the results of all the tests that "the team" reviewed. As usual, nothing new. . . . She has a relatively small brain, no seizures, no need for meds or surgery, and "it looks like something genetic."

Back & forth, back & forth, neurologists think it's genetic/metabolic/mitochondrial, and the geneticists think it's a one-time brain insult, which is neurological. It's the same thing over & over. I doubt they'll ever agree.

Moving Forward: We have a few more local doctor appointments over the next few months, but basically we're going to kick back and try to survive the holidays, the birthdays, the anniversary, the new year. Then I'm going to continue, but this time I'll focus on finding something to make her life better rather than on a diagnosis. Now that she's a bit older we're going to start supplementing her diet, and I'm going to do some investigations and trials on different diets that might make a difference. In the cases of metabolic or mitochondrial diseases, food is the key. In many diseases of this nature, adding & subtracting vitamins, minerals, and nutrients can slow the biological processes causing the problems. But, since she has no diagnosis, it will have to be trial & error on our behalf. I hope I can find a dietician/doctor who is interested in helping us.

So, that was UCLA.