Sparkle Snow by Sada

Today it snowed. It was also very windy. The wind made the snow blow offthe roof and the sun made it sparkle so there was sparkle snow in the air. Dad took lots of pictures and Kyra watched it, too. I think she liked it. I know I did. It's my favorite kind of weather.

Now accepting applications

She's hired! Given that most days I feel like I'm running a one-roomed nursery, preschool, and grade school, it was awfully nice to get a break at least from the preschool duty today. Sada wanted an Easter activity to make this afternoon, so I found a cute little chick poem complete with chicks and a barn all in corresponding colors for her to make. I thought she'd just color and cut a cute little activity(boring, but great for increasing dexterity). Instead, she made a full flannel-board lesson with 18 good-sized rainbow-colored chicks in eggs to match to the poem colors and gave Paige and Jason an art/ language/ math lesson all in one. She found the felt and flannel board - that alone is impressive. But the best part - she did it all on her own without any help from yours truly, freeing me up for a good 15 minutes while kids were HAPPILY occupied in school! Yeah!

If Oprah likes it, it must be good

On Tuesday, Oprah's friend Dr. Oz showed off a few ways to detox and improve longevity - and hyperbarics made the cut! Granted, the chamber Sada uses is a VW Bug compared to the Lamborghini they showcase, but they also spent enough money on that one to buy their own private island (or at least at timeshared private island). We tried to record the show, but that very day our machine had 17 Grand Mal seizures and kicked the bucket. Luckily, Oprah keeps her website updated and you can check out the mini-article on the benefits of diving dry at
http://www.oprah.com/article/oprahshow/20090305-tows-oz-live-longer/4
(you'll have to click on page 5, too, to finish up the tour). As far as the "Wear 100% cotton to avoid sparks" advice, that's like saying make sure your umbrella doesn't have a metal spike on top to avoid being hit by lightning during thunderstorms - VERY proactive.

If you want to keep reading about more fun stuff, the infrared sauna on page 6 is high on the list of detox "must-dos" in this house, too. The ultimate dream spa would have an IR sauna session for 20-30 minutes, 15-20 minute lymph massage to work out all the toxins that were released from fat cells, cool mist shower to wash off all those toxins that came out with perspiration, then an hour in the hyperbaric.... with someone else watching the time so I could fall asleep on the pillows in my personal hibernation cocoon.... makes me dreamy just thinking about it. :-)

A test that's painless AND useful - finally!

Another trip up to the Moran Eye Center ended today in a nearby gas leak that shut down all roads off hospital hill very effectively for about an hour. But this time we planned 5 hours for a 15 minute test and the timing ended up being just perfect, even after being stuck on the road in front of the hospital for 45 minutes without moving. The campus shuttles and buses were just as stuck, so we didn't feel like the inconvenience was too bad - at least we could choose what radio station to listen to while going nowhere.

For the Goldman Visual Field test, the tech shines a little 1/2" round light, like a flashlight, on an 18" white dome while the patient watches a little hole in the middle (a magnifier to see into the eye). As soon as Sada saw the light, she beeped a little buzzer and the tech ploted her peripheral vision borders. Her left eye was uncooperative today and didn't want to work at all, but the mapping really explained a lot with her right eye.

She has a cone of vision that is about 30% of normal, which is why she's still tripping and falling into things. Try this - look straight ahead with your right eye (close your left) and spread your hands out to the side, then start bringing them forward while wiggling your fingers. Stop when you see the wiggles. Normal is about 120 degrees wide. Now move your left arm straight out in front of your left shoulder, and right arm two or three inches out to the side from what would be straight in front of your right shoulder and imagine a big circle connecting the two. The circle goes on for infinity. That's Sada's visual field. She's missing the side views, but also things above and on the ground - if something drops, she might not see the counter below her and bonks her head.

The vision she does have is perfect with glasses, luckily. And she can read whenever she wants - within normal parameters (4 hours straight every day isn't normal?). We'll do it again in a few months and see how things change. But next time we go up for tests, no more broken gas mains, please!

A Very Merry Springday to You!

Sada's turn: Spring is here and it put a bigger spring in my bounce. I made a collage today from the flowers that are blooming outside in the front yard. It was so warm I almost wanted the air conditioner on! I hope it doesn't snow on us anymore :-)

I'm counting blessings today. First off, Sada can talk - the majority of pediatric tumors are located in the back of the skull (right where Sada's is) and 25% of those kids who have surgery are unable to talk for anywhere from a week or two up to six months. Second, Sada hasn't had chemo or radiation - of the dozens and dozens of parents we've met over the internet, there is only one other child with a JPA who went through surgery and hasn't had any other full artillery follow-up with chemo and radiation. Third, even with the no sugar/loads of vitamins, Sada doesn't rebel and throw tantrums. It gets old day after day, but she makes up little games and races to get them down faster (she's up to swallowing 4 small capsules at a time). And finally, she's still here to tuck in at night. That's a very, very nice way to end a day.

With a wee bit o' luck...

...this picture will post. We've been busy making our house festive and trying to catch leprechauns (the more cutting and tracing Sada does the better). Our masterpiece finally took over the fireplace right in time for St. Paddy's Day!

Do a little jig for the fun of it:

Just put your hand up in the air, the other hand on your hip.

You tap your toe, you tap your heel,

you bounce your knee a wee bit.

You dance and prance around the room and circle 1-2-3.

Saints be praised - I'm most amazed!

You all look Irish to me!

Happy Birthday, Lynny Leprechaun!

A little higher, higher...... ahhhhhhhhh

A huge plus to Sada's daily vitamin regime is the extra energy boost to her nails and hair. The 10" strips on her head that were shaved for surgery have grown out now to almost two inches long - I might have to start calling her Rapunzel. Her nails have become "I'll get you my pretty" wicked witch of the west nails like she's NEVER had before. They're white, thick and beautiful and if she gets them all grown out (at the same time) to at least a quarter inch she gets a manicure the color of her choice. That's a pretty big deal, since her nails have never been this long before.

There are so many extra additions to our lives thanks to her tumor. It doesn't do any good to complain about the situation and we decided at the onset to be grateful for the good instead of bemoaning the bad. She's getting really good at scratching all our backs :-)

Gulp!

Sada decided it was taking too long to swallow all her pills so she upped her mouthfuls to two small capsules or one horse pill per swig. It cuts off about a minute of pill popping time. This is the girl that (three months ago) we had to sit with at the table for an hour at every meal saying, "Take another bite, now chew, bigger bite - that's the size of pea, try a strawberry-sized piece. Ok, put that piece on your fork....."

Watching her take supplements on her own really is like living with a different child in a very, very good way.

Little House on Grand Ave

Little House books have a huge fan base around here. In commemeration of Sada finishing for the umpteenth time and Alexis' first time reading the the whole series, we had dessert prarie-style. They learned the recipe from Laura and Mary, but adjusted it a wee bit since we ran out of real maple syrup a couple weeks ago. Two hours after snow storm started this afternoon, Sada ran a big bowl out to the front lawn to catch clean snow (her idea). A couple hours later, after they'd all finished dinner, she tromped out to get the bucket o' new fallen snow and we scooped up snow cones. When we drizzled warm honey on top, the honey hardened into candy but melted the snow just enough to taste like "snow nectar." Simple things can make life grand!

I Spy With My Little Eye

After 3 hours of eye tests and consultations, the conclusion is - drumroll, please - Sada is in fact seeing better out of her right eye than her left eye. (Big thud in the background.) That's me dropping my jaw and thinking, "That's it?" Really, that's it. We found out definitively that the problem is somewhere between her eye and the interpretation in her brain - trauma from surgery, pressure on the optic nerve, pressure to the eye, either before or after surgery, occurring now or then, possibilities are endless and completely open for speculation. Now we have an official baseline "The left eye is not seeing well," so they can document if it improves. Please hold your applause - it gets better!

She had three tests - 1. Watch a checkerboard on a TV screen while electrodes on the ears and back of the head record brain waves as the black and white squares change back and forth for 1 minute. 2. Wear flashy-red-light goggles with the same electrodes for 1 minute. 3. Sit in a dark room with dilated eyes for 30 minutes so the eyes can relax, then insert HUGE contacts with tubes on the front ($1000 each) designed to keep the eyes open for 3-5 minutes. Then watch a red flash, light blue flash, white flash, and one strobe light while the electrodes on the ears and contacts record whether the retina observes the flashes or not. One or two of the tests they did (not sure which ones) were not actually the tests that needed to be done... the opthamologist wasn't too happy and promptly had his secretary call over to make sure we wouldn't be charged for it. We couldn't do the one test we were actually supposed to have run right then because her pupils were still humongous. So we have another 4 hour trip to Salt Lake sometime this month to hopefully learn something we don't already know. :-)

However, there was a bright shining moment in all the fogginess. All the tests were at the Moran Eye Center, which is connected to Primary Children's by the skybridge, and the opthamologist's office is the first door past the stairs (which is the first door entering the hospital from the skybridge), so we didn't have to trek through the whole building that now is bulging at the seams and double-bunked with RSV patients. They can keep their germs there and we'll keep ours here, thanks. The cloudy sky was perfect for Sada's saucer-size eyes on the way home and the flakes falling down were beautiful. With that snowfall out of the way - hop to it, Spring!

Seeing Things?

Sada was putting on her shoes this weekend and about half-way through stopped and said, "I can see the outline of my knee." Really? I sure hope so. She has a two-hour long flashing-light test this Friday at the hospital that will determine how much information is getting from her eye to her brain. Most of the time everything is black through her left eye, but every once in a while she'll see shapes and shadows. There's no rhyme or reason to it - to be expected since brain damage takes seemingly forever to heal. She's been a little put out that depth perception is harder now, however she's teaching herself how to work around it pretty well and the physical therapists laugh at how fast she learns to compensate for weaknesses. I'm so glad we've got them to catch her bad tendencies fast before they become habits.

Who needs tupence?

Or paper or string, for that matter. With an aptly named Windsday waiting, all the kids made kites out of plastic grocery bags and twine and ran outside to be blown around a bit. Thicker, bigger bags usually work a little better but today it didn't make an iota of difference because the storm front was creating massive gusts that flew the bags 15 feet in the air as soon as they stepped onto the back porch. Great for keeping little people entertained all day and even better for luring little Miss My Legs Are Sore out for some serious stretching. When kites failed to hold their interest, bubbles blowing away faster then they could run kept them on their toes. Tonight when Sada went to sleep, she didn't say a word about aches or pains in her legs... playing Mary Poppins must have limbered them up!

I'm tired and bored and I've kinks in my legs...

Following up on the Dr. Seuss theme, Mayzie really gives a perfect description of Sada after Tuesday's physical therapy workout. Poor girl could barely walk without holding onto something because her legs were shaking so bad!

She's so much stronger than she was that now she gets to push to see what she's really capable of - namely balancing in different positions, landing steady after squat jumps, crossing midline hopscotch games and more. Rubbing arnica cream into her sore muscles helped and she went to sleep faster than any of the other kids. I'm going to add "Do Your Exercises" to her vitamin list so she'll remember her mini-workout every day and not lose what she worked so hard for. She also got taped again on her hands (to help with detail work) and back (structural posture support). Last week her arms were covered in bright blue Kinesio tape, so she changed it up and went with neon pink this time. We're going to hide it from Paige and Jason so they don't get any new ideas and duct tape themseves to the bed, or worse, to each other.

There is no one alive who is Youer than You!

Happy Birthday, Dr. Seuss!

We like Theodore Geisel a lot around here - Horton Hatches the Egg is required memorization in this house. Today Sada's favorite quotes from the Cat in the Hat's creator are:

I like nonsense, it wakes up the brain cells.

Don't cry because it's over. Smile because it happened.

I have heard there are troubles of more than one kind.
Some come from ahead and some come from behind.
But I've bought a big bat.
I'm all ready you see.
Now my troubles are going to have troubles with me!

And will you succeed?
Yes indeed, yes indeed!
Ninety-eight and three-quarters percent guaranteed!