December Appointments Vol. 3

The biggest news of the day - the giant MRI now has a video screen so kids can watch movies while they lay there getting scans taken! Sada tried to draw out the MRI as long as possible, so the tech took 40 minutes - and that was with taking Dr. Daddy and his beautiful assistant on a mini tour of her brain so we wouldn't have to wait another hour to look at the scans with the surgeon.

General concensus was the spot seems a little bigger, so it has probably grown 10% or so in the past 4 months. The borders were a little fuzzy, and they weren't sure why, so it'd be really nice if that's because the tumor is dissolving and being absorbed by the surrounding tissue... the only way to really know is to have someone take a close look inside her brain again and that's last resort. The tumor still has to double in size before it would cause any kinds of problems with blocking cerebral spinal fluid or loss of balance.

The second little spot on her brainstem is more a spot than a blur - so it was probably left-over tumor instead of a little artery or vein "artifact" like the neurosurgeon has been hoping. It has a long way to grow before causing problems, too.

The neurosurgeon is going to send the scans on to other departments to get second and third opinions before setting us up for 3 month scans so he knows he has a couple others on board with her treatment (wait, watch and take it out when it gets too big). With her type of tumor, they kind of act like superballs - sometimes they act like you expect, and other times they bounce off the corners and end up stuck in the light fixture.

Sada did end up being a poster child on Primary Children's Facebook page to show off the holiday ice sculptures if you want to check it out, or just enjoy this one:

Merry Christmas!

December Appointments Vol. 2

Eye appointment today. After staring into a round bowl watching lights move around and beeping a buzzer to help the technician draw a map of where vision starts and stops, we walked over the skybridge to Primary Children's and stopped to look out over the city. It was amazing! Then we went to the doctor's office for a quick eye test and to hear about the visual field test results - looks like everything is the same as it was last spring, and maybe peripheral even improved a little bit. We were done in less than two hours in the doctor's office - that's a record speedy trip! Next week - MRI!

December Appointments Vol.1

So begins the epic journey of December appointments. Today was dentist day. We all came out cavity free. We got 2 tokens each. I got a sticky dart (these are awesome!!!!!) and a giant frog. It's a finger puppet. Next week? Eye appointment. And I don't get tokens there. to be continued...

Giving Thanks

I am thankful for:

Kayelynn,
a house,
food,
Mom,
Dad,
blessings,
cousins, . . .

That's all my cold hands can take. Happy Thanksgiving to all!

Love Sada!

Halloween Poems Part II

OK, I skipped a day but here are the rest of them.

In Memory of Anna

Here lies the body of Anna
Done to death by a banana
It wasn't the fruit that laid her low
But the skin of the thing that made her go

It Isn't the Cough

It isn't the cough
That carries you off
It's the coffin
They carry you off in

Columbus Day fun

To celebrate Columbus Day yesterday, we made a Nina, Pinta and Santa Maria and had races in the bathtub. Most of the boats sank fast. They never would have made it to America. Maybe the Canary Islands, but not America. We memorized a poem, too.

IN 1492
In fourteen hundred ninety-two
Columbus sailed the ocean blue.
He had three ships and left from Spain;
He sailed through sunshine, wind and rain.
He sailed by night; he sailed by day;
He used the stars to find his way.
A compass also helped him know
How to find the way to go.
Ninety sailors were on board;
Some men worked while others snored.
Then the workers went to sleep;
And others watched the ocean deep.
Day after day they looked for land;
They dreamed of trees and rocks and sand.
October 12 their dream came true,
You never saw a happier crew!
"Indians! Indians!" Columbus cried;
His heart was filled with joyful pride.
But "India" the land was not;
It was the Bahamas, and it was hot.
The Arakawa natives were very nice;
They gave the sailors food and spice.
Columbus sailed on to find some gold
To bring back home, as he'd been told.
He made the trip again and again,
Trading gold to bring to Spain.
The first American? No, not quite.
But Columbus was brave, and he was bright.

Thanks Chris!

Halloween Poems

I was going through "The Scary Book" and found some Halloween poems. Ready, set, go!

The baby bat screamed
out in fright,
"Turn on the dark
I'm afraid of the light!"

Jonny drew a monster;
the monster chased him.
Just in time,
Jonny erased him.

The black bat sat on the black cat's hat.
The black bat sat till the hat was flat.
"Scat bat! Scat bat!"
Said the mad black cat to the sad black bat.
(Try saying it super fast. I can do it!)

My fingers are tired. I'll do more tomorrow.

Sweet dreams

Friday and Saturday we had a sleepover with our Aunt Tawnya, babysitter of Kyra and lover of children.

On Friday night we drove up to have dinner which was salmon, grilled zucchini and broccoli with sauce. Then we got to have Tawnya set up her projector and we watched two movies. The first one was a VeggieTales called "Big River Rescue." It was all about helping others. Bob and Larry had to help Little Jimmy aka Big Jim find his Mama. My favorite part was when Larry came running back from Muscotine yelling, "Beware the babies!" The next movie we watched was "The Love Bug." Good movie!

Saturday we went to a whole lot of parks. There was one that had a playground like the Taj Mahal and we played Hide and Seek there. It was awesome! There are so many places to hide. We went horseback riding as soon as we finished with the parks. Tawnya's friend, Dan, has neighbors with two horses, one named Seeker and he was jealous. The other one we called Peggy. Even Tawnya got a ride!

We went out to lunch at Zupa's and ate 5 huge salads and one huge bowl of clam chowder. Then we went back to Tawnya's and took baths in her big tub. We also got to choose presents from her stash of promotional freebies. I got an electric fan, Jason got a cow, Paige got a Snoopy, and Alexis got a notebook. It was fun!!!!!!!!!!!!!!!

"Hmmm, seems like it's a little smaller."

That was the first thing out of Dr. Daddy's mouth when the resident pulled up the last two MRIs on screen. It was followed closely by, "It does seem to be a little smaller," courtesy of the resident, and that observation was officially diagnosed when the neurosurgeon walked in and said, "Hmmm, looks a little smaller." With three doctors concluding the same thing, it must be true - the tumor is smaller than it was just two months ago!

Sure, it only went down by about 25%, but considering the only way they know to shrink it is by going in with a knife, no carbs and a few pills is much less invasive. We're thinking the secrets to this success are she's been almost completely off carbs for 4 months (maybe a handful of blueberries and tomatoes, or if she skips the fruit she gets one piece of bread) as well as taking some really strong anti-cancer supplements that seem to have really done the trick. Wahoo!!!!

Happy Birthday to Mom!

Today is Mommy's b-day! She is 35 years old. She got a riveter, hybrid shoes, a CD, a DVD, a vase, blueberries, and a card from me. Tonight we are having a movie night. HAPPY BIRTHDAY MOM!!!!!!!!!!

Baby Boy Time!

Today at 5:54am, Kyra became a big cousin instead of the littlest cousin. My mom's only brother became a dad because my amazing aunt had a wee little tyke! He was 7 lbs 10 oz (which is the same weight as his dad) and 21" long (same length as his dad, too). He has reddish brown hair, just like daddy. So everything is like father, like son! .

When I was little, mom promised my uncle that if he babysat me I would babysit his kids when they were babies. So, it's on to babysitting for me and parenthood for them. I'm so glad I've had practice with Kyra - I'm really good at diapers, even the dirty ones. I'm good at feeding, too. I've had enough baby sisters and a brother so I'm great at playing with babies. I've learned they love patty-cake, peek-a-boo, counting piggies, and newborns love smiles. I'm set!

Red White and Blue - Wahooo Wahoo!

The fourth of July was great this year - it started with close to 2 dozen hot air balloons at 6am, watching them be filled and then lifting off. Then we went down to wait for the gigantic parade that came by our stakeout place around 9:30 and ended about 11:00. I got to see my teacher and give her a hug when Freedom Academy's fire truck went by. They also had an alien Primary Children's float that I liked, too. Then we went home to rest and went over to eat and light fireworks at Grandma and Grandpa's house. They're in a culdesac, so we don't have to worry about cars driving by. There was one that sent up parachutes that we had to run to catch and Dad said that something that fun should probably be illegal. I love the USA!

Entrepreneurial Ideas

I tried lemonade stands when I was little. I think I cleared a whole $2.75. Sada and Alexis started a store this week and invited their friends over to help run "The Quarter Store." They manned it for 14 hours and made $22! Yes, there were a few generous customers who didn't take their $.75 in change, but still! And the best part was I didn't have to help set it up!

They sold "Assorted Items" like giant crystalized rocks, lava rocks - "bubble rocks" that send up bubbles when dunked in water, necklaces, bookmarks, fresh herbs - thyme, sage, mint, lemon balm, sugar snap peas from the garden, plaster paw prints (best sellers) and plaster bug fossils. And for $.25 each item they did great! They did split the money between 5 or 6 helpers, but Sada told me that the amount of money wasn't important. "The most important thing is that we earned money by working hard and doing a good job." They plan on keeping it up through the summer and changing the inventory daily. Yes, they are adorable.

Graduation!

At Sada's physical therapy review last Tuesday, the team decided she's progressed enough that her basic need now is endurance and strength training - both so easy to work on during the summer without having to go to the clinic! Sada was thrilled not to have Sergio stretching her weekly and promised him she will work on her exercises so when we go back every 4-6 weeks she can show off. He will continue to keep tabs on her to make sure she's not compensating for balance or vision in ways that could turn into future problems. Just one extra appointment each week that I don't have to plan around brings such a sweet smile to my face - and she's earned a break. She is more limber than I've EVER seen her before, she can walk and run farther than ever before, and the workouts have affected her whole body from her walk to her sitting posture to even the way she holds her pencil while writing. Sergio has really helped her with a miraculous gross motor and balance recovery and thrown in a bunch of extra bonuses to boot. Everyone should have their own personal trainer for a few months at least once in a lifetime to knock out the bad habits we don't realize we have. But truth be told, Sada is glad to get rid of hers finally!

EIEIO

We tromped through two - count 'em two - farms this week. Thanks to some very patient friends, they've fed horses, cows, calves, farm dogs, chickens, been ignored by goats, geese, turkeys and roosters, and snorted at 4 pigs named Porkchop, Bacon, Kalua and Sausage. These city kids have all decided we will never raise chickens. While I'd love the eggs, wow - fresh air was mighty hard to come by when 400 chickens are fowling the air. (Bro-ak!) And I now see why rubber boots are essential farm tools... especially after a downpour or two while tromping through a minefield of cowpies. Sometimes, a hose with running water can truly brighten up the day!

Eau du spring

Paige, Jason, Kyra and I were running errands when it finally stopped pouring and started sprinkling. We rolled down the windows to feel the raindrops and breeze. I asked, "What does it smell like?"

Paige was the first to the buzzer. "Snail slime. And it kind of stinks."

"Do you want me to roll up the windows?"

"No, because now it's starting to smell good, like clean dirt."

We left the windows cracked until the next downpour started.

Zoo Night

We all headed up to the zoo this evening because they were having a special "late night" where gates didn't close until 9pm. It has been pouring all afternoon, and we hit a few showers on the way up, but by the time we got to the zoo it had just about stopped and warmed up to 70 degrees - perfect to run around without getting hot and the rain got rid of all the mosquitos (and people scared of getting wet).

We had a blast - the big kitties were prowling around, including the leopard and snow leopard (which we've NEVER seen moving before), they had a special birdshow with new jokes and hands-on helpers for the 40 of us that showed up, and when we rode the carousel there were only four others with us! We fed the birds while we ate dinner and pretty much did whatever because there was no one else to bother. Yes, that meant we had chimpanzees swinging from fences and zebras running down the paths chasing cougars, but the animals who were already asleep didn't seem to mind and we went home with very, very tired critters who slept the whole way home (except for Sada who couldn't stop talking until we put in a quiet music CD and told her to think instead of speak).

Let it rain, let it rain, let it rain

Today we went on a nature walk in the rain. Rainboots and ponchos and hoods kept toes and heads dry while we played in a hammock, splashed in puddles and ate teeny tiny bright red strawberries. All of them were really good, even the lighter colored ones. They were still red enough. The air smelled good - rainy and fresh.

We also planted our tomatoes so they can grow while the rainy week lasts. I love June!

Princess windows

Did you know that Oquirrh means shinning mountains, glowing mountains, and wooded mountains depending which Indian language it is translated into? They're the first mountains in the Salt Lake valley to be hit by the sun when it rises each morning.

We went through the Oquirrh Temple openhouse this morning - gorgeous! The girls' favorite part was the celestial room with the clear diamonds in the sandblasted windows - they kept pointing out princess windows through the rest of the building. The lower floors have a lot of dark brown and tan, then it all gradually lightens to a light cream in the top rooms. There are also a lot of circle patterns that start out as curved designs, then change to half circles, and end up as full circles interlocking with each other. Really amazing!

Fossa vs. Lemur

We took a four-hour trip to the zoo today - avoiding the summer crush by going this week before all the SL schools start their summer vacations. The latest exhibit up there is Madagascar animals - complete with hissing cockroaches and even a fossa! He's the size of a large cat, and looks like an emaciated rottweiler with muscles bulging everywhere and giant fangs that poke out when he yawns. I asked if they ever put lemurs in with him to make the exhibit a little more interesting, but apparently there aren't enough lemurs in captivity to make it doable. Oh well!

There was a downpour in the afternoon so the kids played on the playground that was suddenly deserted (my duckies know how to run through the raindrops and enjoy sprinkles). They had the whole thing to themselves for about 15 minutes until it stopped pelting, then the families who had taken shelter in the gift shop returned. We left it to them and went on the zoo train instead. Choo choo!

I like you just the way you are

MRI results this time around - no change! Which is a really good thing considering the tumor grew to its current size in four months but hasn't changed at all over the past two months. The scan looked almost identical to the March scans with a few micro-differences (could be how she was tucked into the scanner). The neurosurgeon said tumors this size will often stay the same size for years, although sometimes they will start growing unexpectedly. He has seen a few shrink and disappear on their own but it's only happened a few times to his patients. He had a pretty big smile on his face when he left the room and said he was "very, very happy" with this scan. Much better than the alternative!

So instead of having surgery, Sada's planned a humongous pizza party tomorrow night to celebrate - and eat all the fruit and carbs she can. A fitting reward for sticking to less than 20g of carbs a day for months. A banana has 39g carbs, a piece of homemade bread has 50g carbs, and a 1/2 cup of pinto beans has 21g carbs (without salsa or rice), so we've become very creative with dinners and lunches. Dreaming of Hawaiian pizza has gotten her through the past two weeks of taking pills and supplements - we're going to make it worthwhile!

My baby!

When there are lots of siblings to help, younger kids tend to grow up fast. Most of our kids started walking within a couple weeks of their first birthday. Kyra is 9 months and thanks to lots of patient help (and in spite of my best efforts to stop it) the other kids have taught her how to stand on her own for 10-15 seconds at a time. And I can't make her stop! Her scrunchy smiles when she steadies herself are adorable... but I'm not quite ready to have another person to chase down!

Messy Party!

For the official friend party (the ones that only happen on even birthdays) Sada and Mom came up with a half-dozen activities that normally don't get done in one week, let alone one day.

We started out with giving everyone white t-shirts so they wouldn't get their regular clothes stained with all the pain and food coloring that was sure to be plashed around. Then they sat down on the front sidewalk to build sculptures out of packing peanuts and water - yes, it's possible, if you have popcorn packing peanuts that dissolve into mush when they get soaked. But if you barely dip the ends in water, they stick to each other and make amazing animals, barns, corrals, skyscrapers, robots, you name it. After most of the girls arrived, we headed to the back to mix together plaster bug fossils - or at least put the plastic bugs in the creamy cement they made and set them aside to dry.

Next they got to paint with shaving cream on black plastic... then added tempera paint on top and swirled it in. Putting card stock on top of that makes beautiful rainbow stationary once the whipped peaks are wiped off. We hosed down the table and got out colored bubble mixtures and straws so they could blow bubbles in the containers and touch thin paper to the spheres, popping them and making designs on more papers to take home.

The next experiment was silly putty/goo with glue and borax - they made up three different colors in three teams then divided them all so everyone was able to take home some of each color. The stuff is really fun to play with, and slightly mind-boggling because two liquids mix together to make a very bouncy solid - mad science strikes again.

We kept going with the paint theme and painted water color paint onto regular paper and sprinkled salt lightly over the painting. Try it - the texture's amazing. By then, most of the fossils were dry, so we extracted the bugs and got out the brown paint, watered it down, and dipped paper towels in it to antique the dragonfly, grasshopper, spider, and fly imprints they'd made. They turned out AMAZING! They sat over by the side to dry and we got out the cupcake makings.

Gel food coloring does a marvelous job of turning play dough into really cool colors and with essential oils added the cupcake makers made incredible masterpieces. They each stuck a candle on top and sang Happy Birthday so Sada could blow them all out and made her wish (still a secret). This "claydough" recipe dries into sculptures really well without cracking. We may have these cupcakes around for years to come if they don't get squished before they're dry. They each had extra, too, so the girls took home their own cupcakes plus a few balls to make more creatures later.

It must have been a great 2 hours, because after it was all cleaned up, Sada declared it an enormous success!

Happy Birthday, bug!

For Sada's special day, she took Alexis, Dad and Mom up to the BYU Museum of Art to see the I Spy exhibit and flying packing peanuts next to a 20' blown up sculpture of trash bags. If we had a million dollars, we'd have both of them in the art gallery at home. The packing peanuts get blown around the room at random times by carpet drying fans. The I Spy models and photos were REALLY fun - the author of all the books had explanations about how he made the models, examples from most of the books, and really fun optical illusions. Hanging out there for two hours made us all hungry so we went to Carrabba's for dinner - the only place around that has a truly carb/sugar free menu. Both girls downed their huge entrees and giganto salads, and Kyra ate an entire lemon slice. After getting home we played board games for two more hours, Sada was sung to more than a few times on the phone, and they went to bed by 11:15... a little late, but it was a birthday after all!

Hippo birdie two ewes

We passed out Sada's birthday invitations for her "Messy Party" this weekend. She's been planning it since February, and has a billion ideas, along with a billion more that she'll do another time because they don't rank high enough up on the fun list.

I'm wheedling down the list to activities that don't involve shooting or throwing (she already gets bonked constantly without peripheral vision) and knocking off games that might create more than 10 or so pieces of garbage on the ground. If it can get sprayed off, blown away, or cleaned up in under 30 seconds, it's got a green light. If you've ever played something that fits the bill, let me know before Saturday's hoopla!

The most interesting conundrum is how to blow out candles without eatting anything that has carbohydrates or any type of sugar. Since I'm sure most kids would run at the sight of a cheese ball and veggies or even grilled asparagus, looks like the cake this year is going to be turned into cupcake playdough creations, and we'll have everyone make their own, stick in a candle, have Sada blow them all out with bubbles or something, then let the guests take home their masterpieces to dry or remold into something else. Creative genius!

Waaaaater!

Since it was 96 fantabulous degrees outside (according to our thermamometer) everyone got to go sprinkling and swimming in the blow-up fishy pool today. OK, tonight. Until 8:30 when dinner was finally served outdoors picnic-style and all mermaid lips had turned blue. Jason called it a night an hour earlier when he started to shiver after the sun set on the pool. There's a lot to be said for water splashing all around when the sun is HOT!

A couple of amazing neighbors stopped by for a couple hours and helped dig out our flowerbed - literally. Their weed pulling was easily a month's worth of work for Jeff and I since it takes so much time just keeping Sada going with her stuff and feeding a baby the rest of the time. You can actually see most of the flowers around the curvy sidewalk - and that relieves my stress level muchly!

Tooth Doc

Today we went to the dentist (tooth doctor). When we got there, it wasn't very busy. I found the new Highlights magazine and started reading it. Mom went in to get her teeth cleaned first. I kept reading. Then Alexis went in after she had been holding Kyra and it was my turn to hold her so I couldn't read anymore. Dad told me to take her to the bead playground in the corner and she decided she wanted to stand up without holding onto anything. She stood up NO HANDS for about 10 or 15 seconds. When it was my turn to go in, one of the tooth cleaners asked about my December. I told her about Christmas in the hospital. Then it was time for the tooth cleaning. I chose orange toothpaste. She put it on the electronic toothbrush and polished everything. After my bottom right side was done, she used the vacuum cleaner and used it the rest of the time. The hygienist came in with Captain Hook's ultrasonic hook to clean off the plaque - that's the same kind of instrument the neurosurgeon used to break up the tumor. Les came in after to check for cavities. I'm going to get sealants next week to stop any cavities in back from EVER making life miserable. We all got tokens for being good patients and I got an icky sticky spider. We all went home with new toothbrushes. The End.

Imagine That!?!

Summer sunshine has this tendency to push bedtime back way too late for little people who need more than 8 hours of sleep each night. Last night we started early, and thanks to blackout shades in all bedrooms, little heads were on little pillows by 8pm. At 9pm, Paige came out cradling her pointer in her other hand and informed the world that Jason just bit her finger. Paige is pretty honest, but only gives the complete story after sympathy loves are received. I skipped right past the hugs, checked for bloodage - none, good thing since I'm not sure Jason is up on his rabies shots - and asked while herding her back to the bedroom, "What was your finger doing in Jason's mouth?"

"Well, I thought it would be a good idea, but actually, it wasn't."

One more set of tucks and kisses on the nose, then all lights out and both she and the boy were snoring within minutes.

Happy Mother's Day

Sada and Alexis sewed their incredibly fabulously amazing mom a purse and embroidered patches for Muver's Day. Apparently they've spent every hyperbaric sewing their little fingers off for the past week. And they did a great job! We have stupendous kids - must take after their parents.

Purple mountains' majesty

There are definite benefits to living in Utah - including being lost in the mountains less than 15 minutes after pulling out of the driveway. We went on an adventure, took a detour and found a brand new trail up the canyon that was full of dragonflies, butterflies, grasshoppers, and waterfalls (in the river next to the trail). Gorgeous! And lots of sticks to throw in the high run-off to make instant canoes. Sada almost did better walking on uneven ground than she did walking on the pavement in the parking lot... who knew?

That's where Mommy's marbles went

Sada had a test to show she still had full possession of her smarts. For the rest of the kids we have to rely on our astounding observational powers. For example, Jason's unintentional funnies.

We were driving along and the back seaters decided to play "I Spy." Jason said he wanted to be first fastest, so he started the game. "I spy with my little eye something that is green."

Alexis: "Is it the tree leaves?"

Jason looked out the window and nonchalantly said, "You're a denius." He hasn 't quite mastered the soft G sound, but still knows how to get his point across. Good dob, boy.

There's somethin in that noggin

A big white envelope came in the mail with the neuro-psychological test results... and they made me roll my eyes. Jeff just chuckled. We had her take the IQ test to get a baseline of where she is now, having had one surgery on her melon, just in case she has to have any additional treatments in the future that could scramble her thinker even more.

Seems like the normally 3-4 hour test took over 5 hours because Sada maxed out on the reading/comprehension/vocabulary part. That is to say, she went to the end of the test questions and could go no further (greater than 12th grade, 9th month). Math wasn't quite as high, but the psychologist did mention that she could miss 2-3 years of school and would still be way ahead when she went back. The written comprehension did lower her overall score, but they attributed it to left-side weakness. After writing for 15 minutes, Sada was really working hard to write legibly and it took a LONG time to get her written responses completed, even though her completed answers were more on level with higher grades and her oral answers were somewhere up in the stratosphere, too. They had some suggestions for that (typing, non-timed written tests, more multiple choice) if it's still a problem in higher grades, but physical therapy should take care of it before it becomes a real concern.

The testers were shaking their heads each time they came out to talk to me because she was so intent on trying every problem whether she knew how to do it or not, and actually enjoyed the tougher sections. They're so used to kids bouncing off the walls and not focusing on anything that they were a little shocked that Sada kept asking for more time to finish the harder patterns and puzzles.

The most telling part of the whole report was the suggestion that teachers need to stay ahead of her and give her fun projects (not more homework) when she finishes with her regular assignments. That's been the story of her life here and at school. She learns so fast and understands so quickly no one can keep up with her! Makes me appreciate our 4 bookshelves of "vintage" 25-cent library books even more (a hazard of having a child teach herself to read at age 3).

And for an RIP encore...

Paige came in while I was changing a diaper and asked, "What do snail moms give their kids when they misobey?"

"I have no idea," says I patiently, not really paying attention since no blood was gushing from anywhere and there was no smell of smoke in the air.

"Slime outs."

I paused with the (clean) diaper hanging in the air to think about what just came out of my 4 year old's brain. She was grinning like a chimpanzee.

"Where did you learn that joke?" I was casually trying to do fasten the aforementioned diaper without looking overtly curious. It doesn't happen often that Paige is the bearer of never-before-heard jokes, although a little mistranslation is nothing new.

"In (pause to run down the hall and return with magazine in hand) this Ranger Rick." We got a new one in the mail a week ago and it looks like she's already zipped through the joke page. I knew she could read well, but I didn't think her comprehension was THAT good when it came to knee slappers.

I like my kids. :-)

In memory of the recently departed

The kids' favorite joke is -

There was a snail who slimed over to a car lot and said, "I need to buy a car."
The salesman said, "What kind of car are you looking for?"
The snail said, "A fast car with the letter S painted on the side."
The salesman said, "Why do you want the letter S on your car?"
The snail said, "So that everyone who sees me will say 'Look at that S car go!'"

The end

;-)

So glad I'm not French

Jeff did have two whole years in Belgium and France to try escargot, but in spite of even specifically asking for it at meals, no one was willing to make it for him (they didn't want to have to eat the critters with him). But for those who enjoy the so-called delicacy, come on by anytime before next Tuesday when the garbage man stops by and pick up a baggie or two out of our trash. We've got enough to feed the entire neighborhood... and there are more where those came from. It rained all night long and was still overcast this morning, leaving the little snails living in our yard in a quandary. They're supposed to go home during daylight hours but the sun never came out so that left them climbing up and down walls & fences and wandering across walkways just as the kids woke up.

I promised they could go to Thanksgiving Point to buy something from the farm if they did their jobs and had enough money earned to buy the toys they wanted. Those who didn't had to earn it in whatever way they could. The fastest-paying job around here is snail catching. Paige is the grand master, but the rest of them are pretty good, too. All together, within an hour they had picked up over 180 snails (Jason and Paige stopped counting after 15 or so because they were more worried about the snails climbing up and out the bag, but they average about 30 apiece on normal mornings). At a nickel for each snail or slug they all made enough to buy prizes - including a stuffed horse, peacock feather, plastic dog, and little sea shells. Seriously, if anyone wants to hire some expert anti-pest-os, these kids come pretty cheap!

Yellow Brick Road

Well, more like black asphalt path, really. During physical therapy last night they were testing her strength, balance and endurance so we went on a 25 minute jaunt down the Provo River Parkway (just across the parking lot from the clinic). Sada was outwalking all of them and having a great time until we came to an underpass that was about a foot under water from the run-off. So, we turned around and headed back the other way. That was about 10 minutes into the walk and just enough time to start getting her a little tired. When she does get tired, her muscle strength on her left side really starts dragging and it's a little harder to keep her leg facing forward - it starts angling out to the side. We went for 15 more minutes of running and jogging just to see how much stamina she could pull up from her gut. She did remarkably well. I got to be her left-side guide so she wouldn't step off the trail into the river... not a great way to impress three therapists looking for improvement. :-)

I'm so glad when Daddy comes home!

Doctor Daddy took a quick trip this weekend to Portland for a conference. There wasn't any whining or meltdowns or gnashing of teeth while he was gone because on his way out he told the kids that if they were obedient and got along well this weekend he would bring them surprises. Yes, we believe in the reward system (it isn't bribery if they have done their jobs well, right?). Besides, it's always more fun to receive presents if there's a little bit of anticipation to get excited about!

The two younger best buds got desperately needed sandals that should last them for a year or two, and will be passed down looking decent when they've grown a foot or two. The more mature siblings both ended up with sewing kits, complete with 20 mini-spools, scissors, pins, needle threaders, pin cushions, and a 12x12 lined box to keep it all organized. All morning Alexis was embroidering some kind of sampler that I promised not to peek at, and Sada made two purses within the first 6 hours. Pretty impressive! I also received a sewing kit since mine was destroyed in last fall's bathroom flood... really, the only item that was moldy and had to be thrown out (aside from two walls of drywall and a tub, but they're not truly items. They're more like things.) Kyra received two books, chewed cardboard off the cover of one of the books before her nap and threw up all over the carpet - the kids promised to never leave books on the floor from now on so maybe the object lesson was worthwhile. And we all get to play a lovely fairy & elf game that looks fun for the whole family. Now they're asking when he gets to go on another trip. Oh, what love!

Hawana wakawakawaka niki pupupu

Yes, it's a silly song. We've been listening to it for a while because Sada stretched to it during dance class warm-ups last fall and started singing it to Daddy as a farewell on his way to work one day, knocking his socks off with amazement that she had the whole thing memorized syllable by syllalable (yes, syllalable - get it, lalala).

She gets it from her ex-DJ father who knows just about every song ever released from 1980-2001, when he finally stopped moonlighting at weekend weddings and graduated from med school.

April MRI scan

The radiology disks finally arrived, so here's the inside scoop (that's a funny!):





The offending spot is lit up right behind her eyes in the middle of the brainstem and cerebellum, in the top half on the back side of the skinny black space (the 4th ventricle). It is 10mm at the widest measurement. Her ventricles are still bigger than normal, but compared to previously they have almost shrunk to half the size they were pre-surgery. The original scans are on the January 25 post.

Hoppy Easter

We had a really relaxed Easter. We dyed 6 dozen eggs last week - mainly because that gave everyone enough eggs to be creative to their hearts' content and not cry when they dropped and cracked one or two or eight. Since we had plenty of eggs, they had 4 hunts! That was great because we could keep getting sneakier hiding them and Paige and Jason never became frustrated since they knew they would find some eventually.

Before the last hunt, Paige was getting really onery and didn't want to take a nap. When she got the news that unless she went to sleep she wouldn't get to find eggs, she came up with a brilliant insight that was quite true, "But it won't be any fun without me!" Five minutes later, she was snoring. And we had quite the happy hopper for the rest of the day!

I think I thunked a thought

During Sada and Alexis’ “Frog Prince” five-act play for Mom, Dad, Paige, Jason and Kyra, there was an intermission with a bee who explained what pollinators do, a praying mantis who informed us that if he were a girl she would eat her husband, and a butterfly who told us about flying and asked:

“Any questions?”

Paige obliged:

“I have a question. What is a question? (no answer)

Is a question a question? (pause)

Is the word “question” a question? (small pause)

Can you imagine what you think? (no pause)

Can you? Imagine what you think?”

I was laughing so hard I cried. Everyone else decided to ignore her and the stinky, slimy frog and his promise-breaking princess went on with the play.

School's out (side) from now on

I've been in touch with Freedom Academy to figure out how to get Alexis back for the last month of school and make sure we have places held for the kids when classes start back up in the fall. And yesterday, I got a call that is good for all of us!

This week Freedom was scheduled to be out Friday and with Spring Break next week they're only having classes Monday and Tuesday. Realistically, the soonest Alexis could go back would be April 20th (so she wouldn't be held accountable for the end of unit tests and projects). But state testing starts that week, and after that there are only three weeks of school left since their last day of class is May 22 (Sada's birthday, fyi). The administrators thought it would be best if Alexis stayed in home school for the rest of this year since she'll be right in time for the major tests but miss all the prep work.

Even though Alexis won't be back this year, they'll still be assigning teachers for Sada, Alexis and Paige next fall!!!! That was the biggest reason to push for Alexis going back, in spite of the fact that the flu and that hacking, lingering cough are still going around and I was really dreading having to deal with any colds that might come home accidentally. So this plan works for all of us. WHOOOOOOOOOO! And I'm still doing history, science, literature, recess (the kids feel it's their job to remind me about that and PE three or four times a day) and math to keep them all caught up without having to stay back a level when they start in the fall. I'll just spread math out a little longer to give us something to do this summer and we'll be perfect!

And the results are.....

...pretty good after spending another 6 hours in impromptu appointments at Primary Children's (and none of that included time to eat lunch!). We got to mosey around 4 separate clinics on different floors and were even told that we know how to navigate the hospital better than some of the employees - how'd that happen?

We got to the Imaging waiting room right at 10:30 and they called Sada in 2 minutes later to start her MRI. She didn't get music or a movie this time, but she did get the super expensive REALLY powerful scanner. Comparing the two machines they have, these latest pictures look like professional portraits next to cell phone photos (the previous scans). We didn't get to bring home the dvd of the photos because their disk writing machine froze this morning, but they are going to mail it to us this week (so I'll put them on the blog soon).

The scan showed:

1. The little spot on the brain stem where the tumor had infiltrated hasn't changed at all and wasn't showing up as anything on the new MRI. That means it probably won't come back.

2. The little "artifact" (thingy) that appeared after surgery at the base of the cerebellum hasn't changed - so it is most likely part of an artery or a calcification - but it's not any cause for concern because it hasn't changed a bit.

3. The cerebellar area at the top of the tumor (where the surgeon said it was really hard to get into without damaging healthy tissue) does show up lighter with the contrast MRIs, so the tumor cells have been growing there. It's about the size of a pinkie nail right now. Comparing it with the post-op MRI, the tumor spot is a lot clearer and larger... mainly because there was swelling and some bleeding obstructing the view the day after surgery. It is sitting below the 4th ventricle on the cerebellum and has enough room to grow quite a bit before it would start causing symptoms like gross central balance loss.

We talked to the neurosurgeon, he wants to wait another 2-3 months for another MRI and see what happens to area #3 - 1 out of 3 resected (surgically removed) JPAs grows more, 1 out of 3 stays the same forever, and 1 out of 3 goes away on it's own. But he did send us up for an oncology consult so he could have someone else collaborate his opinion. The doctor completely agreed with a wait-and-see approach, and if it does grow a lot over the next few months she'd much rather do surgery than chemo or radiation. Yeah, we'll agree with that opinion. Believe it or not, surgery is much less traumatic than chemo or radiation... and doesn't carry a bucketload of side-effects to dole out along the way.

To sum it up - the tumor is gone in the most dangerous spot (the brain stem). The tumor area where the surgeon didn't want to "explore" during surgery did grow more - but Sada didn't loose any necessary brain cells then, and it's clearly defined now which will make a resection easier if it is needed next year. The spot is growing, but slowly, and isn't going to cause any problems for a long, long while. And we have plenty of time to try a few more aggressive ideas without feeling like this is a last chance effort.

Officially, Sada's stable - no new symptoms and no new treatments. Interesting diagnosis, huh? As Dr. Seuss puts it, "You're in pretty good shape for the shape you are in." And now that the wait for the MRI is finally over we're going to play outside - 70 degree weather deserves a celebration!

Ouch!

Sergio worked Sada HARD today - she's never been so limber. He made her lie down on her back and do a butterfly (legs pulled up with feet touching) so her knees were touching the floor by the time we went home. She's had really rigid muscles since December, so to say it hurt is an understatement. Then after doing that, about 50 squat-and-stands and climbing up and down a wall ladder for 5 minutes, her legs were jello and shaking until she finally went to bed. She had her feet taped again, too, which has made big changes in her gait and balance. She's decided pain is the price you pay for perfection and she's going to get therer sooner or later!

I played a joke on you!

We didn't go all out this year, but didn't get skipped over, either.

April Fool's Day Rundown:
1. We cut a hole in a box bottom and pretended we caught a vole, then scared dad by grabbing his nose with our fingers when he looked inside.

2. We put an elastic band over the kitchen sprayer to get mom (but Alexis got sprayed in the face first).

3. Sada and Alexis spent all afternoon in the bathtub stringing up a bucket full of origami to tip onto mom and dad - they were surprised.

4. Jason got all dressed in red clothes and a blanket, then Alexis helped him "fly" onto mom and dad so they would be attacked by the dreaded dragon.

5.. We smooched Kyra so she wouldn't feel left out. She burbled in appreciation.

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!

Spring Fever is going to hit hard!

I love Spring! Kids can run and climb outside on the jungle gym instead of inside on the couches. That makes for a much happier mom scrambling around the house while kids are occupied and very tired sleepy bugs at night. Great for everyone involved!

It's nice having the weather change just in time for March. Especially since Sada's MRI was rescheduled until the first week in April (instead of the first week of March). The change means the quarantine will continue for at least one more month until we can get back to church, school and playing with friends. But we won't be all stuck inside together - we can be outside together getting our daily dose of vitamin D.

The nicest surprise that has come from all this togetherness is that the kids have become really close friends. They liked each other before but true love at home was definitely fleeting at times. Tolerating one another has gone by the wayside and they are much more thoughtful of each other's feelings. Even Jason and Paige talk out their conflicts instead of banging each other over the head. They've learned that if they get along they get more activities - painting, playdough, beads, puzzles... so they're pretty happy most of the time. And if they all keep it up this week, they get to toilet paper Dad's bedroom (shhhhh - don't tell). It's not considered Mom's room if she's helping, you know. As always, any other ideas to keep little hands and minds busy over the next month will be greatly appreciated!

Dinosaurs

Today's middle dive was the birthplace of the next most popular hand-clap rhyme. Alexis and Sada have been making up songs and claps to go with the songs to scare away boredom and the creation for today is called "Dinosaurs."

Dinosaurs in the land of the mists
Hit by a comet and don't exist
We've never seen one but we know
They all lived a long time ago.

The tune is "Down on the banks of the Hanky Panky," with a little creative liberty. They're both poets and didn't even know it!

Since the primrose and crocus are now in full bloom (just in time for this weekend's snow flurries!), Sada and Alexis have been happily snapping away getting every angle viewing angle captured on film.... well, pixelated on memory card. After this morning's shoot, Sada was sitting by me on the couch and said, "I just remembered something. Sometime before my surgery, I remember looking through into the view finder and I couldn't see anything. I thought there was a problem with the camera, so I didn't worry about it." We had been playing around with photos the Friday and Saturday when she went in... but it could have been earlier, too, especially if the pressure had been fluctuating and affecting her vision.

Note to self: If I wake up some morning and have to start raising a family from scratch all over again, along with rules like "Don't draw pictures on your bed sheets with red permanent marker(and don't let your big sister remind you of your follies by writing "Don't write on the sheet" in big red letters under the aforementioned mural)" and "Always apologize when you put your elephant's nose into someone else's ear," don't forget to add "Tell your parents IMMEDIATELY when the camera only works with one eye and not the other." I'm going to be an incredibly insightful mom someday if I can just remember what I've learned so far....

Another evaluation at physical therapy to see how far Sada's progressed. The results: she's improved leaps and bounds from where she was a month ago and still has plenty to work on for next month, as well. Skipping, running then stopping to pick up a ball without tipping over, and standing still are all about up to acceptable. Without depth perception it's a lot harder to judge distances or height changes when walking on uneven ground, so we'll have a lot more work in the throwing/catching and kicking categories just to learn about determining distances. Balancing on one foot is still WAY off - if she focuses on a wall or window she can last for about 3 seconds... improvement by 3 whole seconds over last month when she couldn't even attempt it. Patience is a virtue here because progress isn't overnight. Then again, according to the original outlook, she's months ahead of where she should be. I love my bug!

Spring fever has hit... I actually had to come up with activities today to get Sada into the hyperbaric. Usually she has them planned out a day in advance, but not today. Even with the rain, the snow melting and tulips and crocus popping up keep drawing her outside. That's a good thing until she needs to be in the chamber - so I spent a half-hour threading looms so Sada and Alexis could make scarves/ blankets/ doll pillows while diving. It worked today - and any other ideas of what to do for an hour in an extremely large balloon are very appreciated!

Beautiful day + lots of kids all awake at the same time = Trip around the neighborhood and beyond!

Since it was up to 45 degrees and everyone was up from naps and out of hyperbarics for a whole 75 minutes (new record!) we explored the neighborhood TOGETHER!! Yes, sounds simple, but trying to fit it in with so many sleepy times and dive sessions has been impossible - until now. :-)

The crocus are popping up and the tulip mounds are bulging . Moss is growing inbetween cracks in the street - in Utah this is a very rare occurance, in fact, Paige didn't even know what moss was, poor little desert dweller. I loved not having to push a stroller since Kyra loves her sling wrap (and I do, too). No clouds, no coats for a couple of kids and best of all, no complaints about being cold. Wahooooo! We saw a ton of people drive by and waved like a bunch of ducks on parade. Sada did pretty good walking on uneven surfaces like bumpy sidewalks and snow, although after a couple near spills we instituted the buddy system for her as much as for Paige who was wearing Alexis' boots (four sizes too big made her clumsier than a blindfolded cow).

Bookworms have voracious appetites

Sada's done pretty good at keeping her reading down to normal human levels (not her average 4-5 hours each day). That is, she was doing great until today. Over the past few days, Sada and Alexis have both been reading "Little House in the Big Woods." Same book, different hyperbaric sessions. Then before bed last night, I dug up another copy of "Little House on the Prarie," being nice and thinking they could each keep track of their own. Then this morning happened. That's when they realized they were both starting the same book at the same time. If Sada reads at the speed of light, Alexis is the speed of sound. But Alexis reads when you least expect her to and passes Sada up regularly. They both read the Little House books in Kindergarten and 1st Grade, but hardly remember anything about them after watching too many Little House reruns on PBS. I'm guessing Alexis will start (or already has started) another book soon so Sada will obviously finish faster and Alexis can enjoy Laura's literary adventures without having to race.

Snow started falling right before physical therapy and it was COLD outside. Then within 10 minutes of starting her exercises, Sada had little sweat beads on her nose - quick climate change! Lots of midline-crossing moves and stretching her back and feet to help keep her body balanced. She moves faster and faster and since her brain is rewiring how to stay upright, if she's not concentrating and moving purposefully she tumbles. She did get some nifty tape on her hands to help improve her palmar strength and hand/eye coordination with pincer grasp activities. The tape stays on for a week (or until it peels off) and supports the muscles that should be used by strengthening them without conciously having to think about it.

We counted up how many dives we've done on our hyperbaric chamber in one month - and Sada's spent a whole lot of time diving. As of today, the total comes to 120 65-75 minute sessions! A dozen or so were only Jeff, but that's still an insane amount of time for a 7 and 9 year-old to hang out together in a very confined space! Sada and Alexis are now expert Nertz, Speed and Clue players and can both shuffle card decks like pros. If only there were sharks to swim with to make it more adventurous.....

For Valentine's Day, Daddy got heart-attacked. Sada has wanted to sew something for ages, so we made 6" hearts and Sada and Alexis stitched them closed during hyperbarics. Then while Daddy was busy cleaning the kitchen, Mom and kids strung a bunch of red and white streamers and tied a dozen balloons to the heart pillows and let them go around Daddy's bedroom. It left Kyra speechless - well, squeal-less. Sada was awfully proud of her hearts and interior design abilities.

Grandma and Grandpa Wright have been in Salt Lake for training sessions while preparing to go to the Philipines as an Assistant Legal Counsel for the LDS church for 18 months. They stopped by Friday night to drop off Valentine's/Christmas presents and were able to talk to Jason and Paige while Sada and Alexis were in the hyperbaric. The kids have had a wonderful time playing with the dolls and cars. We should have a happy, un-bored family for a while with all the activities!

Getting ready for Valentine's, here's a heartfelt THANK YOU for prayers, cards, emails, and all the other extras that have been rained down on us. There are soooo many people who have truly gone out of their way to help without our having to ask. Some of the extra miles we've seen include:

• Calls from our driveway telling us to look on the porch for surprises (they didn't want to risk spreading germs)
• Lysoled presents to make sure nothing extra is given along with the intended gifts
• Grapevines of calls to figure out how to include our kids in Primary lessons without passing the possible coughs or colds on to us
• Letters from next-door neighbors because they knew they wouldn't be able to talk at the door
• Aunts, uncles and grandparents visiting through the front windows instead of coming inside
• E-mails galore instead of cards (especially from kids who are not known for their anti-microbial characteristics)

It's so stressful keeping on top of everything we have to do, alot of the "should dos" have slipped through the cracks. Instead of asking to be exceptions to the situation and put really bad possibilities into the equation, it's been a huge relief to have others watching out for Sada, too, without having to be told or even reminded.

Once again, thanks!

Welcome to our home! For those of you who can't walk up the sidewalk in person, here's a virtual view of what you would see upon reaching the porch:

More polite than "Quarantine!!! Stay away!!!" and it seems to get the message across to most people that no one is allowed inside. Yesterday I saw a salesman walk up to the house, pause, and turn around to go on to the neighbors... maybe I should leave it up until summer to cut down on all the vacuum demonstrations.

Paige wanted some time in the blog spotlight (she reads now so I can't make up new stories while reading posts to her) so here goes:

Paige and Jason are great helpers. They help Sada get better by giving her shots with their souvenir syringes, giving her hugs and giving her kisses. Paige would like to share Sada's dresses, but Sada doesn't think that will help with the whole healing process. Overall, they are helping out instead of hindering especially when it comes to helping with Kyra. They keep her from eating papers and books while Sada and Alexis get in the hyperbaric, and they know where all the baby toys are for when Kyra starts getting frantic and Mom is counting out vitamins. They really like having Sada and Alexis home because playtime and school time is much more fun with a couple extra friends/teachers.

Paige and Jason

Do you have something to share with the rest of the class?

For all those who have tried to leave a thought or two and ended up in cyber neverland, the comment form should work now. If you're still having troubles, try commenting as "anonymous" and leave your name in the comment. And don't fret if your comments don't show up immediately - due to a number of little issues, they will go to our inbox to be accepted before they show up on the blog. We'll see if this tweak fixes past problems!

By the time we finally get Sada's supplement regime figured out, she's only going to need one real meal a day.

This afternoon, her pupils weren't constricting much no matter how bright the lights were, and unusual dilation is usually what precedes the bug-eyed look that seems to indicate extra pressure in the brain... goody gumdrops! (Please excuse the sarcasm - it's been a very long night.) In the treat bag from Jeff's office came another 8 supplements/ homeopathics/ nutrients which will add around 18 more pills each day, all specific to inflammation, swelling, bruising and trauma. I've been told that with brain surgery it can take 3-5 months for inflammation to subside. No horse pills this time, just some little vitamin E caps, bromelain, EFA & DHA to go along with everything else.

She doesn't have headaches and she's not throwing up, so there's no "proof" of the swelling and no way to test it without getting inside the skull... been there once and not going to do it again, thanks! It would be really frustrating right now if we had to wait until things got worse before being able to do something about it. Maybe that's why Sada got to be our oldest instead of growing up in another family!

Today's school lesson focused on construction - industrial and grammatical. Before rearranging the kitchen and family room to create a 5 bedroom, 8 blanket (queen & king sizes) fort that takes up all of one room and part of the next, Sada and Alexis were tasked to create a mini-opus. But that was way too much work to do with such an edifice waiting to be raised. Sada settled on an ingenious composition, reflective in more ways than one. Meant to be read backwards and forwards, it sums up her current outlook on life pretty well. I've typed it out twice to make it easier to read. Her teacher is awfully proud ;-)

Recovering

Recovering is ok
Though visitors must wear masks
You can talk on the phone
However you can't go anywhere
You can eat fruit
But
You can't eat sugar
Recovering is hard work
I know

I know
Recovering is hard work
You can't eat sugar
But
You can eat fruit
However you can't go anywhere
You can talk on the phone
Though visitors must wear masks
Recovering is ok

Sada started a countdown for the next time we can go to the zoo. Why? She misses seeing the animals. The child hasn't hit stir-crazy yet because we've been doing LOADS of activities, but she misses normal life. She still has some massive knobby nodes on her neck so her immune system is still working overtime - little by little. And with the 5-8 grams of vit. C she's getting each day, she'd better be healing fast!

Tucking Sada in, I asked what the best part of the day was. We had made a ton of crafts, played games, danced, had puff pancakes for dinner - all good stuff. But not good enough. "For physical therapy I didn't have to wear the NeuroSuit!" They did a lot of midline crossing exercises to help with her balance and perception but it was a lot easier without a couple dozen elastics providing resistance - she was sure it had only lasted 15 minutes. Time plays funny tricks on your mind when you can appreciate how good you've got it.

Good thing Sada's not a groundhog - she wouldn't have been able to look to see her shadow. The latest adventure is a stiff neck... she was fine all weekend, but today she kept saying it hurts in a stretchy kind of way back by her incision whenever she looks down. She also didn't do any stretches or exercises this weekend because she was feeling fine. Welcome to the wonderful world of scar adhesions and healing! I rubbed it out a little and stretched her some more, which helped. She said she would remember to do it herself so it won't get bad again like it did today. Experience is a fine teacher; just brings with it a bit more pain than learning the other way.

Have you ever pondered why the wise men brought the gifts they did to the baby Jesus?

Gold, while sparkly and shiny is purty enough to stand alone on its own as currency. Myrrh is an amazing herb that boosts the immune system and would be expensive but desirable in a 15BC first-aid kit. Frankincense smells divine... kind of a patchouli/sandalwood/non-hippie masculine cologne for the ultimate Robin Hood. Sada gets whiffs every day because now it is a major component of her daily regime.

Also known as boswellia, the boswellic acid acts as an anti-tumor agent and makes tumor cells commit suicide (aka apoptosis). Nifty, huh? Amounts per day depend on the amount of boswellic acid in the formulation, so for now she gets 14 throughout the day. But they taste good and burps aren't too bad, either.

To Sum It Up...

Here's a quick recap of the past month - Sada had brain surgery to remove most of an egg-sized tumor from the back of her brain and spent Christmas week in the hospital recovering. Since she's been home, she's had 3 hour physical therapy sessions twice a week, 3-4 hours a day of hyperbaric treatments, 1 or 2 nutrient IVs every week (minimum 5 hours long each) and she takes an average of 25-30 pills each day to stop the tumor from growing and help rebuild damaged cells. Her balance was completely shot after surgery and has improved dramatically, but she is still tipsy and has a hard time judging distance. Vision in her left eye varies between outlines of shadows and a whole lot of nothing with very rare flashes of clear sight in small areas once a week or so. All kids are home all day, all the time with no outside visitors to prevent any hitchhiking germs from taking advantage of an immuno-suppressed, adrenally-stressed cutie.

Overall, she's happy. Healthwise, she's not "good" as in the definition that everyone would like to hear, but she is stable. Miraculously, we're still receiving lots of tangible evidence that prayers are being offered and answered in her behalf. And characteristically, she has chosen to leave her favorite song on the top of this blog's playlist going on two weeks now because she's not tired of it yet. Enjoy!

Feat of the day - there is a certain 9 year-old in our house who has refused to swallow any type of pill since she was tiny. Psychologically or physically blocking herself, she just wouldn't do it. This month we've been giving her the responsibility to take her supplements, remember hyperbarics, ask questions if she doesn't understand explanations at the doctor appointments, and especially make the choice between IVs and swallowing pills. As of this morning at 8:30 am she is an official horse pill swallower! She needs to swallow 7 big ol' pills an inch long and as big around as a green onion to get out of doing weekly IVs, and she took the initiative and got one down on the first try! Choice and accountability is a great thing when raising kids.

Three more hours of exercising this morning, but this time with a specific goal - to be steady enough to carry a baby around the house. Sada started working on babysitting last October and even braved quite a few diapers. Losing coordination had the unexpected consequence of setting back her goal of being head babysitter by a couple months since it's a little harder to be in charge if you can't put the baby in bed without running into a wall or two.

During physical therapy, she worked on slowing down and controling movements purposefully instead of letting gravity do the work. It made a huge difference with balance going down stairs and stepping over the obstacle course that Sergio built out of blocks and wooden rockers. She's got a long way to go, but she's determined. And if she remembers to go slow she'll be changing Kyra's diapers again in no time (cross my fingers!).

Show and tell - the tumor is between the brain stem and cerebellum. It shows up on the MRI because the contrast dye is absorbed by tumor cells. On the side view, the larger light area is the cerebrospinal fluid under pressure (the tumor blocked most of the fourth ventricle so it wouldn't drain down the spine properly). That top ventricle is 2-3 times the normal size.

Sada spent the morning turning her head around - imagine an owl. Why? She hasn't been able to since her surgery so her pal Sergio worked her hard Thursday with stretching and breaking up scar adhesions. She tried full rotations a few times Thursday afternoon but her muscles were still sore. When she woke up this morning it was like she had a whole new neck that, well, worked! Up and down are much better although the real improvement comes side to side. She was copying Kyra looking every which way. Kind of like a giraffe getting out of a neck brace - simply adorable.

Today was chock-full of physical therapy from 8-11:15, 3 sessions of 75-minute hyperbaric treatments that had to have at least a three-hour break in between sessions, and 4 or 5 different meals... I can't actually remember because I was on the phone most of the day tracking down wedge pillows. Did you know they're awfully hard to find if you don't call the right places?

First step: a 20 minute phone call to insurance to find out exactly what they will cover (Answer: they don't know what items or how much $ will be covered until they get the claim. Isn't that sneaky of them? And they'll only pay their miniscule part if we've hit the big ol' looming deductible AND bought it from one of the companies on their special list). Second: call around to the stores that the nice insurance rep recommend only to find out that pillow wedges aren't high on the priority list of "in-stock" durable medical equipment, meaning we'd have to run around to 3 different places between Provo and Salt Lake to try out all the heights. But Sada can't even go out in public to try them for another month or so. One girl did say they were about half as wide as a normal pillow... Sada has rolled off her pillows and out of bed once already, so skinnier isn't really gonna do the job.

I started calling the "non-participating providers" ie. everyone in the phone book. And there were some very helpful salespeople, but most of the styles you do have to see to appreciate which means waiting at least until Saturday and Jeff or I wearing a mask to the stores to avoid coughs etc. etc.

I finished up calling around 5, mainly because kids were hungry and it's one thing to chop veggies for soup while holding a squirming baby but a whole 'nother thing with a phone squished to my ear, too. During dinner, a wonderful neighbor called to say she was outside in her car in our driveway with a demo wedge pillow for Sada to try out over the weekend - turns out she was the most helpful of the helpful salespeople, noticed our name on caller ID (she didn't tell me!) and decided to get in at least a bushelfull of brownie points by delivering it to our door right in time for beddie bye! It's been out on the floor for a while so the foam isn't off-gassing the super stinky toxins and I had time to wash the cover so it was ready to go after the last hyperbaric for the day. But the best part is the pillow is 2 feet wide so Sada shouldn't be rolling off the bed tonight :-) Somebody up above is still scheduling undercover angels for us and we're awfully glad.

Thought for the day: A coincidence is a small miracle in which God wishes to remain anonymous. Thanks, Kayla!

Back up to SL for the follow-up eye appointment... a 3 1/2 hour eye appointment! And that doesn't include the 2 hours driving time, either. Luckily, the next appointment won't be at the Primary Children's office and should be a little quicker (according to the nurses).

The opthomologist was very happy with the "drastic improvements" (his words) in her left eye's mobility. He couldn't detect any bouncing from residual trauma which surprised him since today is only the one month date from surgery. Usually it takes 2-3 months easily to stop the bouncing... go Sada! Her vision loss is baffling both the opthamologist and the neurosurgeon so we'll go back in a month and a half for a few more tests to find out what parts of her brain are responding to visual stimulae and where the damage might be.

He normally doesn't expect to see any improvements in vision for at least 2-3 months after surgery because with brain issues it takes at least that long for most swelling to resolve. Her tracking - moving both eyes together - looks "just about perfect" and there's no extreme pressure on either eye from any extra fluid behind. Now her job is to recover, relax, and take care of her right eye while it works overtime. We'll get a wedge pillow to raise her up more at night which might help with extra intracranial pressure that seems to build up when she's flat.

At the end of the appointment, Jeff asked if there was anything else he'd recommend to help with reducing the remaining inflamation and Dr. Hoffman said, "Well, there is a hyperbaric oxygen treatment that we've seen some patients have success with." Been there, done that! We're ahead of the game thanks to inspriation and blessings!

And we just happen to have Sada pointing out the lovely features of the chamber at Now I Can - perfect for a pressurized cat-nap anytime of day. The chamber at home is a lot like this one with little windows, a big zipper, and lots and lots of hoses for the oxygen and air compressor. It does get a little cozy - but it's winter. That's the season for getting all wrapped up in a warm cocoon, right?

Physical Therapy again today - after 4 days off, I thought Sada would be really feeling all the stretching today. Nope! In fact, Sergio, the therapist, had given her homework to do over the weekend and she'd remembered. So she was able to really increase tension on the NeuroSuit and she more than tripled the weight used on the pulley system in the Monkey Cage (Jeff named it "The Rack"). You go girl!

Sergio kept checking with her to see if she was in pain, and her answer was always, "Yeah, it hurts, but it's a stretch hurt not a pain hurt." I've NEVER seen her work out so hard. Think 3 straight hours of personal trainer time at the gym. And yes, she was sweating. By the end she could just about go down the stairs without holding on or falling over. Her balance on one leg was so much better, as well. She kept saying that the rubdown at the end would make it all worthwhile.

Moral of the story - Trials are mandatory. Misery is optional.

It took a weekend to figure out, but these pictures should save a thousand words or so:

Presenting Sada's Physical Therapy in a NeuroSuit and in the Spider Cage!

The NeuroSuit helps give resistance to force the brain to recognize movements instead of relying on what comes naturally. For most people, naturally is correct. After Sada's cerebellar rearranging, naturally isn't always correct. Even after one session, this therapy is intensive enough to make leaps - and she's bounding on two feet now, too!