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!

Short & sweet -
I tested Sada's vision last night right before she went to sleep. Her sight is still the same in her left eye -a small oval where she can detect movement and some bright colors. The improvement shows up when she looks over to the far left - she can! I mean her left eye can move clear out to the far corner!!!! And her eyes are tracking together pretty well, too. I didn't notice any horizontal bouncing peripherally (from brain trauma) but I wasn't looking for it either. Too caught up in the moment, I guess. :-)

By Sada:
This morning me and Dad went to Now I Can to do physical therapy. I woke Dad up at 8:00am, which was the time we were supposed to be there. We were 15 minutes late - ooops. I got to put on this really weird suit called the NeuroSuit. That's a brown leather suit that has lots of bungee cords on it that make it hard to move. They have 8 sizes and I was size 3. The cords try to stay contracted, so you have to stretch them to move. I popped one bungee cord on my leg and another one came off the hook, so they decided to replace the broken one. It went with a big pop and it was really funny.

Next I went into the Cage. It is a metal wire grid that has bungee cords attached to it. They put a belt on me and attached the bungee cords to the belt. It made me stay in the middle of the room. I had to stand still and keep my balance.

Then I went into the other half of the Cage which has a table. There were weights and some bungee cords with pulleys. They strapped some things on my shoes and attached it to the bungee cord while strapping my other leg down to the table so I couldn't cheat. The weights were attached to the pulleys which made me hold my leg up straight. Daddy named it the Rack. I think I had to hold each leg up for five minutes. It HURT! But afterwards, they rubbed lotion on my legs and that felt good.

When I came home, I did a hyperbaric dive with Alexis. We watched "The Ultimate Gift." It's a funny movie with a good lesson - be grateful for what you have and don't be greedy!

I think miracles are keeping us going. Thanks to another set of incredible coincidences, contacts, and connections, we've been able to get a hyperbaric chamber here at home! We'll be able to keep up with the twice-daily treatments regardless of Jeff's schedule (he's had to cut his patient load in half because he has needed to go and do treatments with Sada) and we can do it over weekends... Yeehaaa!

Why is this piece of the puzzle so important? Well, hyperbaric oxygen therapy - also known as HBOT - uses an increase in atmospheric pressure to allow the body to incorporate more oxygen into blood cells, plasma, cerebral-spinal fluid, and other body fluids, which results in getting larger doses of oxygen to damaged tissues faster than normal. At sea level the atmospheric pressure is 1 ATA, which allows the lungs to absorb a normal amount of oxygen from the air. At higher altitudes, the pressure drops and the lungs are not able to absorb as much oxygen from the air. Think of oxygen masks dropping in airplanes at high altitude - they deliver extra needed oxygen due to lack of pressure. The exact opposite happens at any depth below sea level. The pressure there is greater than 1 ATA and now the lungs can absorb oxygen more easily and at a greater volume.

It's not a high oxygen overload like some therapies, in fact, just the pressure change alone can help with allowing the body to absorb more oxygen from ambient air. But as long as we're trying to increase O2 levels, we may as well add a few extra molecules to the mix so Sada wears a nose cannula to get a low dose of oxygen during the time she's feeling the pressure. She comes out looking just like she went in, but a little more awake - she just got dosed with extra energy!

The chamber looks like a big, fat, hollow hot dog with windows... kind of a white weinermobile without wheels. There's a mattress on the bottom to lay on or sit on during the "dive." An oxygen source on the outside is connected to the chamber, the entry gets sealed up, and it takes 10 minutes or so to blow up like a balloon and reach 1.3 ATA - equivalent to 10 feet below sea level. Yawns help to adjust the ears for pressure changes. Sada will read, do workbooks, or watch a movie on a portable DVD for the hour or so she's in there. Jeff sleeps.

Usually HBOT is used for wound healing, scuba complications, and altitude sickness. But stroke complications can be completely reversed, and it's also extremely helpful for cerebral palsy, autism, brain trauma, multiple sclerosis, visual impairment, sports injuries, ADD/ ADHD and detoxing. We've been amazed at how fast Sada's incisions have healed and how much improvement her eye has shown. Maybe it's all coincidence and maybe she's just been lucky, but somehow I doubt it. To be able to start treatments so quickly after coming home - and continue even over New Year's - was almost too good to be believed. In this case, blessings + work = miracles!

Write it off!

After 2 weeks of phone tag and going in circles with the credit union receptionists, I finally got an official answer to the question I've had since the beginning.

Ta tata taaaaaaaa - it is confirmed that all donations to "Sada's Recovery Fund" are definitely tax-deductible! For those who have helped through the button on the blog, print out a copy of the PayPal receipt and it will work as proof of a charitable donation for taxes. If you wrote a check, wait until it goes through and get a copy of it from your online account info (or we can get you a copy).

All the prayers that have been said for us have brought huge blessings - some of which have been monetarily. And they've been and will be a huge help, especially after seeing the amounts that have arrived in the mailbox over the weekend. For the hospital, surgery and follow-ups, we are responsible for $4,000 in 2008 and $4,000 in 2009. For the physical therapy, we have to hit an additional $6,000 to get it covered - and that's only if there are less than 20 visits in a year. Right now she's supposed to go 8-10 times each month. After 20 visits it's all us regardless. That's a whole lot of mullah. I'm glad we did have insurance to take the brunt of the blow - I'll never complain about premiums again.

Jeff, Sada and I looked like masked bandits going into Primary Children's today with our masks on - but the security guard at the front desk just smiled and said, "Good idea. RSV season has started." So we passed by all the sneezers in the halls and got to Neurosurgery just fine. And no waiting - we were ushed right in so they could go to lunch after our first post-op appointment.

The surgeon, Dr. Kestle, said her tumor was 3.5mm x 3.5mm x 5mm, so think large gray Easter Egg standing on end. It hasn't been a full month yet but he was surprised her eye looks so good and has so much movement back. Her incisions are healing fast (chalk it up to hyperbaric help) and her balance has improved, too. He noticed her obvious weight gain and we asked if it would have made a difference in her improvement in swallowing. The tumor was much higher on the brainstem than the area that affects swallowing, so he couldn't see how that would have made a difference. But it was infiltrated and pressing hard on the coordination center - which is why she doesn't have asymmetrical weakness, but doesn't have as much control on the left side. It could have also made a difference in her swallowing coordination - getting the tongue and jaw to work together to get the food down.

The tumor was on the right side of the brainstem, which affected the left side of her body. But the cerebellum was affected on the right side, which controls the right side of the body, and so far we haven't seen any right-sided concerns. Jeff also asked about the extra pressure on her eyes in the mornings and Dr. Kestle said he hadn't ever heard of that, but we should ask the opthamologist about it next week. Because that was one of the very few symptoms she had pre-surgery, we'll continue with the 3 princess pillows she's sleeping on to keep it under control.

I had a lovely talk with the insurance company today - seriously! The rep was actually helpful. I wanted to check on our coverage, since we should have a few little invoices coming in over the next couple weeks. And we saved ourselves $2000! (Both Jeff and I thought our deductible was $5000 per year and it turns out to be only $4000.) Too bad December and January ended up in different calendar years... at least the covered expenses would have stacked up nicely.

I'm sure lots of you folks are semi-curious but way too polite to ask so I'm gonna tell ya - brain surgery is expensive. Not as bad as we thought - we were pretty sure that in one week we'd hit $200k but we'll probably be hanging out around $100k instead. That's thanks to the surgeon who only charged $12k for the surgery. I think we got a deal. Only three days worth of claims have gone through and the total thus far is a little over $58,000.

Anyone else want to claim splurging like that for their Christmas this year??? No Scrooges around here, no siree!

And just in case you ever have the urge to get some really cool shots of what makes your brain tick, the price tag of Sada's evaluative MRI was $4,909.35. She'll have one of those photo shoots once every three months for at least the next few years, then every six months for a while until it goes to annually. HELLO!!! We'd better get some framed 8x10s for that price!

Sada had her OFFICIAL Physical Therapy evaluation today at Now I Can, and compared to the eval last week it was like looking at a new girl. She could run, jump with both feet, and her balance getting up and down steps was almost normal. The obvious limitations start with static balance - whenever she's not moving it's really hard to not fall over, including when she's moving and stops suddenly (and she's had lots of practice at home avoiding little people, so it's not lack of trying). Even on hands and knees, when she lifts her left arm and right leg, or the other way around, she has a really hard time not falling over.

The most interesting thing we noticed is her natural tendency to use her right side instead of left. She's been left-handed since she started writing (before that she was ambidextrous). And she still writes with her left hand, but she's been throwing and leading with her right arm this week. And her control is SO much better with her right side with follow-through and form. Things that make you go hmmm....

She's improved so much during the last week that it looks like the longer-term effects are finally showing themselves. Maybe it's the brain swelling going down, or the overall pressure decreasing so the inflammation from the surgery is more obvious. Who knows - we have a surgical appt. Monday to ask questions. So, we start 6 hours a week of PT next Tuesday - the ultimate exercise program... and she thought dance was intense!

I had a couple of great conversations with Sada today. One involved what to eat for lunch, and the other was figuring out what to do to stay busy this afternoon. The great part was it didn't look like she was watching a basketball game while she talked to me. Her eyes stopped bouncing!!! The surgeon said (and the opthamologist reiterated) that the bouncing vertically was a result of surgical trauma and would go away eventually. Eventually came fast!

She was super ornery the rest of the day, and we're supposed to be very aware of mood changes, but since nothing else bad symptom-wise showed up I'll chalk that up to not being an only child in the house anymore and having to fight for mommy attention. :-)

Some say "Christmas comes but once a year...." but not if you're lucky enough to be one of our kids! In the Belgian/Canarian traditions that were ingrained when the mama and papa both lived over thataway, we decided to celebrate "Kings Day" and actually give all the kids the gifts that didn't get given on the normal day of gift-giving. Miraculously, all Christmas shopping was in fact done before Christmas Eve (must have been those angels helping out again). But our days have been so full of hyperbarics and hyper-babies that it got put off until Alexis, 7 going on 27, decided that Jan. 6 would be present day since we'd already talked about the European countries closest to our hearts (Belgium, France, Luxemburg, Spain) celebrating their major gift giving on the day when the three kings showed up to see baby Jesus.

Sada and Alexis volunteered to keep Paige and Jason busy by building block towers upstairs while I went downstairs, threw a few things into 5 different bags and took them back up with the announcement, "Don't count the number of presents - enjoy them. You get what you get and don't throw a fit." The last is the mantra the kids repeat when one of them decides to throw a tantrum at dinner. Between desperately needed winter clothes and a few books and art supplies, our "Dia de los reyes" was a hit and Christmas is FINALLY over!!!!

We did everything just before Sada's second hyperbaric appointment this afternoon. She'd spent most of the afternoon sitting down, and was pretty tipsy when she put on her boots to go outside to the car. When she got home after doing an hour dive, she walked in a straight line across the kitchen without holding onto the couch or counter, and she was taking bigger steps. Maybe she was just more confident in herself at home after being away, but it could also be the extra oxygen from the dive helping reduce pressure on the brain stem. Let's go with the latter and I'll have sweeter dreams tonight ;-).

Sada's had a very relaxed weekend - on purpose. When she woke up Saturday morning, her eyes looked slightly bigger than normal. Not bug-eyed like the night we took her in, but just enough to show there's some increased pressure. Without nausea, vomiting, or any other symptoms there's no need to take her back to the hospital, but it means that the fourth ventricle isn't draining all the extra CSF and equalizing it like it should. It means that she gets to keep doing hyperbarics religiously this week, and she's sleeping like a princess on a feather bed with 4-5 pillows underneath wedged up so her head is slightly elevated all night to let gravity help with drainage.

Jeff did a little bit of ortho-bionomy (really light muscle work) today to help release her stiff neck muscles and help with drainage and found some humongous lymph nodes while he was at it. She hasn't had any low-grade fevers so her immune system seems to be keeping up with the extra work, even though her body is obviously working over-time to get back to normal. We can't do alot of extra lymphatic drainage because dumping everything too fast or loosening up junk too quickly will overload her liver after dealing with all that was pumped in through the IVs. So we're going for the "bit-by-bit" approach - followed closely by "wait-and see." If patience is a virtue, this family is going to have virtuitousness coming out our ears by the end of this year!

Hyperbaric chambers are good for more than the bends and wound healing! After doing 2 one hour-long sessions Wednesday, Thursday and today, Sada is quite literally seeing some definite improvements. You could chalk it up to time and coincidence, but we were told it could be at least a month or two before any changes started occuring.

Sada's been seeing a small circle in the bottom center of her visual field in the left eye, but today it seemed to be a bigger oval and she could see color. Beyond that, while she was covering her right eye and looking around to "test" her left eye, she was moving it 3/4 of the way towards the outside... and since she came out of surgery she's never been able to move it beyond center. Wahoo!!!

It's not a massive change but it is very significant. It means that the inflammation in that area is going down, and more sight recovery is probable instead of possible. Those O2 molecules pack a pretty powerful punch when you get them into the right places with a little extra pressure!

Isn't starting out clean a great feeling? Not that 2008 has been bad, but it has been rather eventful. It all started with a 1-month pregnant mama and all that jazz, then we followed with highlights like a 3-room basement flood involving a bathroom demolition, a new roof put on 1 day before Jeff's birthday, cutie girl #5 born at home on Jeff's birthday, and ended with a showstopper - but no heartstoppers, thankfully.

I'm thinking this year's resolution will be to find at least one quiet moment a day... even if it takes locking myself in the bathroom and plugging my ears while little fingers inch their way under the door. After all, sometimes it takes full concentration to appreciate the subtle joys of life!