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.

Avery Bean, the Busy Bee

Now this is a hobby a parent can love, as long as it doesn't cause too much flooding.

To the mall for a pair of rain boots. How big is Avery? I'm this big, see!

Look how cute I am, mom.

Now it's time for a puppet show with Zoe the baby slipper.

Finally, mission accomplished, rain boots.

The usual please: The carousel, an ice cream cone, and a ride on the Bob-a-Builder toy (that's what Avery calls him, anyway).
Rowe Rowe Rowe your boat. . .Hey dad, you're outta tune. Let me turn those knobs, please please please.

Avery's styling salon. Now sit still & take it like a girl getting her hair brushed and fixed by her mother, who had to take it like a girl when she was a kid, etc.

LA LA Land

Now I remember why we don't live here anymore. It took us longer to get from LAX to UCLA (13.9 miles) than it did to fly from Seattle to LA. And it was the middle of a weekday! Brutal! We were late getting to the hospital, but like most things LA, they were later. We waited in the admissions area for 2 more hours before we even got up to our room (they were late with a discharge, and slow with housekeeping).

But we're here. They started the EEG immediately (I was impressed at how quickly and efficiently they got her all hooked up, without bundling her), and told me the next morning that she is NOT having seizures (despite her many odd movements and Dr. Chugani's diagnosis). We're relieved, and we believe them; we never thought they were seizures, and 2 other neuros didn't either. So we're stopping the Topamax, and I couldn't be happier. She might be a bit crabby for a few days without it, but I'd rather that than have her needlessly over-medicated.

Tuesday she had another PET scan. They had a hard time getting a usable scan, because of the anesthesia they chose (Propofol). Too much and she quit breathing, not enough and she wouldn't hold still. They couldn't find the magic in-between, but today the docs reviewed it and said it was good enough and we don't have to repeat it.

I met with the geneticist today. He's a guru in his field, highly recommended, and a wonderful man. He spent a lot of time with us, and said that we didn't need him, we'd already seen some of the best. In fact, the doc we saw at UW in June was his teacher, and the one at OHSU is outstanding in the next generation of geneticists. He offered his opinion, which, not surprisingly, was nearly identical to the one from UW. Then we talked much more philosophically for quite awhile, and I appreciated his candor, intelligence, honesty, respect, and insight.

Friday she'll have an MRI & a MR-Spectroscopy, so we have to hang around for that instead of coming home tomorrow night. The neuro team said that review of the PET showed some asymmetry in her left lobe, and hopefully the MRI & MRS will shed some more light on that. Until now we have been told that her brain was structurally complete & symmetrical, just too small (in the same way that some people have smaller feet than others, but they're still normal feet). All of these images will be overlayed to help show subtleties that otherwise might be missed. It will be interesting to see how all these images fit together, and how all these brainiacs are able to interpret them.

But, with that said, I think this will be the last stop on the road to diagnosis for Jordan. We are ready now to accept that we will likely never know what "happened." We're going to do our best to find Jordan a "normal" spot in our family, and release ourselves of the quest to find a cure or a diagnosis for her. Of course this is easier said than done, and logistics are still a huge problem, but we will try.

Devon and I have known for a long time that we will probably never know the cause of Jordan's condition. We've also known that there is no expectation for her to get any "better" or develop any more. We've "known" this for awhile, just as we knew when she was born that there was something wrong. But we needed to see all the doctors, go through all the testing, and live through the process, painful as it is. We needed to know that we did our best, and we need to be comfortable with the decisions we make as we go forward. And for all of that we needed data, opinions, and interpretations. We needed to come to terms with all of this. We needed time to digest things, and experts to share their thoughts and experiences. And now we're done, at least for now, at least until something new and different and logical presents itself.

Frankly, it's going to be very hard to go forward as a family while having a permanent newborn among us. It's screwing up all of our plans, hopes, dreams, expectations, and our lives. But hey, that's life. Shit happens (that's what the geneticist said today, so I'm quoting a medical authority). We'll cry, we'll be exhausted, we'll be stressed out about jobs , and money, and quantity time with each other and the girls, and quality time with each other & the girls. We'll let go of our old dreams & expectations, and learn new ways to forge through our unexpected life. We'll do the best we can, and hope that it's enough. We'll deal with it.

I, for one, have just one small hope: That she keeps on smiling that ridiculous, gorgeous, goofy, heartwarming smile. Forget rolling, and sitting, and walking, and talking, and learning. I just want her to smile while she's here on this earth with us, and I'll imagine it's because she knows how loved and cherished she is, and that she's happy being a part of our family. Corney & cliche as it sounds, it really does make it all worth it when I see that grinning face and those useless front two "beaver teeth" shining through.

Another Day, Another Doc, Part Gazillion

It was a busy weekend getting ready for our big trip to UCLA. Luckily we were able to head over to the Firstenburg Center this afternoon for a family swimming outing. It's got a great water slide & an awesome pool, including a lazy river.

Actually, this time I'm not dreading things too much. I think I'm already pretty drained, and I'm really worried about her "seizures" and her Topamax, so I'm actually excited for the video EEG this time. And to talk to the doctors to see what we should or shouldn't be doing about her episodes. Boy was she miserable this weekend, and I hate to see her like that.

I am kind of excited to be going to LA, and hope to be able to meet up with some people on Thursday or so. Our schedule is totally up in the air in terms of the hospital stay; it will depend on what tests they want to run once they see her and her EEG. So I'll be winging it. [If any of you in SoCal are reading this and want to try to get together, call my cell phone or track us down at Mattel Children's Hospital at UCLA.]

I've been trying to prepare Avery for a week (+/-) away from BOTH Devon & I. She doesn't even seem to care, she's just excited about getting to stay with Nana Noma the whole time. I choose to believe that she doesn't really understand that we're all going to be gone for that long. They are mostly going to be here at our house, to make her feel more comfortable, and to keep an eye on the cats & the construction (and the freezer full of breastmilk that Alan and his crew cannot uplug). I hope that it's not going to be too hard on her, but I also hope she misses us at least a little bit. . . .

On Saturday night Jordan & Daddy watched almost a whole night of Hockey Night In Canada, while Avery & I went t the mall to find a new pair of rain boots for the winter. We also had ice cream and rode on the carousel. We did find a pair of boots, but for some odd reason, it wasn't that easy. Not much out there, and not much selection, which is odd, since the rainy season is coming. But many places (including Target) put their boots out in the spring. I'll remember that for next year. . . .

I'll keep you posted as I can. I'm crossing my fingers for wireless in the hospital, like they had in Detroit. That rocked!

P.S. In case you didn't know, you can watch full episodes of TV shows (like Grey's Anatomy, etc) on the major network websites (abc.com, nbc.com, cbs.com). It ROCKS!!! They only leave the episodes up for a certain amount of time, and only do it for certain shows. I LOVE this!

More Punkins

Our Little Helper

Avery's growin' up.

We always joked that we couldn't wait to have kids to do things like get us the remote control and mow the lawn.

We're getting there. Avery's interested in things like washing dishes herself, sweeping herself, going potty herself. "I can do it all by myself, 'cause I'm such a big girl." We hear it all day long.

I suppose, however, it's a little bit early to get her going on the lawn mower, considering she's still terrified of the vacuum cleaner & the coffee bean grinder.

Avery decided to wash the dishes tonight, all by herself, so she climbed right up & washed all the clean ones in the drainer.

Phun Phone Photos

The quality isn't great, but it's fun!

These are some shots from the Children's Museum on Wednesday, and the after at Kate & Kelly's house.

Phirst Phun Phone Photo Ever

Don't Play While You're Eating

Our cleanest garage ever











Becomes our new playroom/future dining room. Yippee!











Out with the old, in with the new (I love the smell of fresh lumber)

Mojave relaxes between bangs.

It should all be done in time for Astrid, Matt, Julie, & Jack when they come for a visit in mid-November. Betsy, I'm not sure how far along we'll be by the time you get here, but maybe. . . .