Starting Over

Finally, a new month & a chance to start over. June has been a bit crazy around here, but we survived. Jordan certainly had some bumps along the way, but she's holding her own, even with her newest diagnosis (from today!!) -- Roseola. Of course, since she only woke up with a fever of 104'F this morning, but no other symptoms, we'll have to wait it out and see if the rash follows in 3 to 7 days. Luckily we were able to control the fever with Tylenol, Motrin, and cold washclothes, and luckily it wasn't an inner ear infection (she had copious drainage from her right ear all last week, so we were worried her t-tube was plugged and the fluid was building up behind it in her middle or inner ear). But, her ears both looked pristine, so, that left us with Roseola, since it's going around. . . .

Last week, a couple of days after a spur-of-the-moment trip to the ENT over the ear drainage issue (bleck!) Jordan sailed through her Botox treatment. She only had to have oral sedation (Versed), so no digging for veins (phew, like the week before), and the 4 shot sites along her spine didn't seem to bother her at all. Now her back is weaker than before, so we'll start working her muscles to stretch them out this week. Hopefully this will help slow the curvature of her spine, partially caused by the shortening, tight muscles we are trying to weaken. It's a bit of an experiment, so only time will tell. The results of the Botox will last for about 3 to 4 months, so we'll have awhile to see if we think it helps her.

Of course during all of this with Jordan, we've had some wonderful visits with friends & family. I'm busy going through my photos, file after file, and plan to do some fun posting within the next couple of weeks. Hang in there with us! I certainly plan to be a much better blogger in July!

June Madness

Yikes -- I have thousands of photo to share and tens of stories to tell, but just can't seem to get to the time on the 'puter for the last few weeks.

First we went to uncle Jon Paul's high school graduation in eastern Washington (8 car-driving hours away). Then aunt Jill, visiting from Alaska came back to Vancouver with us for a few weeks. At the same time, nana Noma went to California with her sister for a vacation. Currently we have friends and fellow bloggers Astrid & Matt and Kim & Jamie staying with us for the week. Then next week grandpa Earl & grandma Linda will be here for a visit, too.

In between all this we've continued with Jordan's therapies, and a few extra doctors appointments here and there. On Tuesday Jordan had some diagnostic testing done that included 1.5 hours of poking ("fishing" in 11 different vein sites) to try to start an IV for sedation for a lumbar puncture (ouch!). It was devastating. Once they finally had her sedated and the LP done, they went for blood samples in her jugular vein, 3 times, and she was dry as a bone -- so we didn't even get to complete all the testing we needed. Then, after that I had to send samples to France & Canada for analysis, as the hospital isn't allowed to send internationally. This was no small or cheap feat. I was so wiped out by the events of that day I ended up in bed at 6:00pm. No Fun!

I guess I'll just have to delete all 503 e-mails sitting in my inbox & start downloading pics from my camera -- perhaps in July when all the company is gone. There's too much to do right now to spend too much time at the 'puter.

Yes, We're Alive

We're here, we're here. We were just gone for a long weekend to see my baby brother, Jon Paul, graduate from high school in eastern Washington. I think it's going to take a couple of days to get caught up! But, we're all doing fine, and are still relatively sane, considering it takes 8+ hours each direction to get to Cusick.

Check back again soon!

A Day In The Semi-Sun

It was sort of nice on Monday, off and on, so Avery, Kate, and even Jordan took advantage of the sun while the could. Unfortunately, all that exercise and fresh air for Jordan rendered her sleepy & drowsy for her physical therapy, education, and vision therapy later in the day. PT isn't too bad, Whitney can still bend & stretch Jordan's muscles & joints while she's sleeping, but there's not much Ms. Sarah & Cindy can teach when her eyes are closed! Oh well, some therapy days are better than others! At least she got to play outside with the girls that day instead.

A Busy Week

Monday was the Ear, Nose, & Throat doctor. He's a little baffled about why Jordan is so full of mucus, so we're going to "experiment" for awhile. He wanted to wait a week, then, if she's still so "juicy," try some antibiotics to see if she has a bit of a sinus infection. I, on the other hand, want to sleep through the night in what seems like my own comfy bed in my own comfy house, instead of pretending like we're camping and Jordan is the neighbor camper with diesel engine she has to warm up for a few hours before she gets up. Yes, her breathing is that bad!

So, instead of waiting a week to see if she might have something viral that might clear up on itself, I took matters into my own hand and am going to do a week-long trial of Zyrtec. Why not? Devon & Avery suffer from allergies, why shouldn't Jordan? I'm crossing my fingers that this helps, and we can avoid some of the other, more distant possibilities: sinus tubes, turbinate reduction, tonsillectomy.

Today was her yearly appointment with the ophthamologist. She says that Jordan's eyes are still anatomically fine, and mechanically sound, and that she should be able to see. Her pinpoint cataracts have not changed since she was born and are not located in a place that will impair her vision. Her retinas are pristine (no signs of genetic or metabolic disease), and her optic nerve is almost perfect (although a little more use would make it a little healthier, but we're working on that). Jordan does have a slight astigmatism & is a little near-sighted, but not enough that it would be worth trying to correct with glasses, and not enough that it should interfere with her learning to see with her brain. So, we will continue with a diagnosis of Cortical Vision Impairment, and continue to try to teach her brain to process what her eyes do see.

Then it was off to the dentist for both Avery & Jordan this afternoon. They were both superstars and both got "As" for great teeth. Avery managed to sit still for x-rays this time, which clearly showed her 6-year molars right about to pop through. Even Jordan made it through the cleaning and the fluoride without gagging all over. Superstars!

Watching The Backyardigans, while anxiously waiting for the hygienist to start cleaning her teeth. Hmmm, perhaps she thought she'd get a pedicure, too.

Avery gets a go at the "sucko!"

Even Jordan was a good sport & has great teeth (a big relief since they're so hard to keep clean, and I'm always worried about her teeth & gums due to all of her seizure meds)

Superstar! Avery loves taking Jordan along to appointments, as she always ends up getting to pick Jordan's toy or sticker for her (and tends to keep it for herself, too). Jordan is a good sharer!

Sink Or Swim

After a full YEAR of swim lessons (except August & crazy December), every Tuesday & Thursday night for a half-hour, we're finally starting to see the rewards. Believe me, it was worth it just to be able to get her head wet in the bath at age 3 (she was never a "water baby"), but now I'm super excited to see her doing it all by herself in the pool, and feeling great about her accomplishments, too!

Floating by

Finally swimming

Diving right in

You Whack Some, You Miss Some

Devon took Avery to play mini-golf today, and after watching her whack the ball good and hard, and making a hole-in-one through the windmill, he took her straight to the sporting goods store and bought her her first driver -- the Loco Kids! So, a couple of hours later we all shared a large basket of balls and each tried out some new clubs we've "inherited" from grandma Linda & grandpa Earl. Here's Avery having some fun with her new driver. She says that each ball she hit went about 1 mile -- she's not great on estimating distances, yet. (PS: And, as Avery learned today, the driving range has nothing to do with driving cars. . . .)

With a little help from dad

All by herself!