Ty's Tuesday music picks & an announcement

Gather the boys around, because they're in for a treat. Finally, something they can aspire to. Portable DIY entertainment. (*Remember to scroll down to the bottom of the page and click pause on the radio player so you can listen to these clips in all their glory).

Bohemian Rhapsody accompanied by Queen


And you thought this song was annoying on the piano! What if your kids could do this? Car trips would never be the same again.

"But, mom...I have to practice!"

On another note, Ty is doing well and we are still waiting for the doctor's to get over their vacation catch-up work so we can discuss Interferon to treat Ty's tumor. It has not changed in size (good and bad). All the hair on the back of his head has fallen out, but he is the fuzziest kid on top. Now for the announcement....

No,
I am not pregnant with twins,
but we are expecting this......

Tune in on Monday, July 23rd to see what fun giveaway I'm unveiling. One entry per person per item - U.S. residents only (unless you'd like to pay shipping). You do not have to have a blog to enter, just the ability to leave a comment. Until then, or actually until tomorrow, because I know you just can't go a day without checking in.

The twirly thing

We found this at the mall on Tuesday and it's Ty's new favorite eye candy.

Somehow the video isn't that great of quality, so I'll try again later and swap it out.

Ty's Tuesday Music Picks

First, a little sun for the lovely New Zealand people.... from the Sensory Garden

Just a reminder, to watch these videos, you'll first want to scroll down (to the very bottom of the blog) and put my lovely music player on pause then come back up and click to play the vids.

Ty's hair has started falling out. Again. Rats! It may be time to get the lint roller out...

It really does work great to get the stubble off before it ends up in his ears, mouth, eyes, you name it. I just wonder what he thinks when he hears the tape - shhhwick and feels the tape - brrraaap rolling across his scalp.

We sure are gonna have some great conversations one day.

Back to the music vids, here's the second installment of OKGO. I think the reason they appeal to me so much is the dancing (and the guy in the white shoes somehow reminds me of my cousin). I think it's his panache and extreme lack of self consciousness, plus my 'cuz starred in his own friend's movie.

Now, do all my many other cousins know to whom I am referring? If you're reading this, I'm sure you know who you are (remember that whole 'fainting thing' in Grandma's basement? Ahhhh, we had some great times Rambo).
Next up is Life In One Day by Howard Jones
Ignore the poor video and sound, I really did know a guy in High School with hair like that and clothes like that. Hmmm...It must've been the 80s. Like, totally gag me with a spoon.

Some Lemon Pepper Grilled Chicken salad. Yum - for grown ups!

If you've made it to the bottom here, let me share some more fun with pictures:

You're telling me we're outta 'hot'? (oatmeal)

Oh no!

Do you really think I'm gonna fall for that one again?

See, I knew we had some. Yum!

Ty Will Rock YOU!

Edited to say: This video is brought to you courtesy of my birthday fairy. She (actually Mr. Triumph) has waltzed our family right into the 21st century with a digital camcorder and we've been having lots of fun with it. It's not too great at still photos, but on Monday I'm updating the blog with Sensory Garden pictures taken with the digicam.

I've decided to read your comments to Ty, I think he'll get a big kick out of them. So, if you stop by - won't you please drop a line to him? Tell him how awesome he is and how fun it is to hear him sing along and stuff. (If you post anonymously and you'd still like him to know who you are, just include your name in the comment). Maybe we'll be able to convince him to do a karaoke night for us. Thanks.

I trimmed this video quite a bit, but I thought you might enjoy watching him Jam Out to Queen. Listen closely, about 12 seconds into it (38 sec mark) he says "Rock You"
He actually said it twice, but I somehow edited it out of the video - oops.

That is huge! He mostly signs. The only other word he says is "again" so this is a major deal! Yay!!!!

Ty's Tuesday Music Picks

Edited to change out video (for a really fun one)
I played my playlist for Ty today and discovered a few I need to add to his Ipod.

For your listening (and viewing) entertainment:
You may all have seen these guys already, but I hadn't - so I thought I would share.

Who can forget this era?
Choose Life! Waxed eyebrows, neon, and short shorts - oh my!


Ty loves the sound of string instruments, so it was only natural for him to dig this next one. I may just have to learn how to pick that chorus on the guitar.

Happy Tuesday y'all!

Ty's Tuesday Music Picks and a laugh

First, a family favorite -


Me and Julio

He likes this one, too - 500 Miles


A little Rhapsody in Blue - this was his favorite for years, especially when a good sub-woofer was on.

Just watch the first two. Doesn't the first remind you of Meg Ryan? The second one just cracks me up. Ohhh, I needed that.
The third one is just silly and the last one is painful to watch. Take my word for it, just the first two. You didn't watch the whole thing did you?

Sensory Garden

A Sensory Garden is fun for every child - or the child in each of us. It includes plantings that appeal to each of our senses: Sight, Smell, Touch, Taste, and (done right) even Hearing.

You can plant a mini Sensory Garden using potted plants or you can go all out and plant an entire flowerbed or yard. Typically they are accessible to the diabled as well. My son is in a wheelchair so we have planted everything to be at a height that is easy for him to touch.

Our vegetable garden is raised so that he can help pick the peas and tomatoes. Involve the kids and talk about what you're planting - they will love getting their hands in the soil.

Here is a basic planting list for each of the five senses - my favorites have an asterisk next to them. Many plants can fit into more than one category.

Pictures of our Sensory Garden can be found here

Sight - This is where to include bright colors and annuals are great for this

Snapdragons*

Anemones

Gerber Daisy

Yarrow

Larkspur

Salvia

Carnations

Tulips

Pinwheels - The metallic ones are very eye catching

Petunias

Smell

Fragrant Roses (Blossom Time*, Tiffany,* Fragrant Cloud)

Lavendar* - also calming, when kids get wound up - have them pick some for you

Mock Orange

Hyacinths*

Phlox*

Mints (best grown in a container, they are invasive)

Dill (crush between fingers)

Chammomile (apple scented)

Curry plant

Chocolate Basil or Cosmos

Touch

Lamb's Ear

Fern

Moss

Succulents

Sedums

Water features
Sensitive Plant - very cool, closes when you touch it

Ornamental grasses (some of these can give you a paper cut, choose carefully)

Pebbles

Taste - be careful to plant these together or clearly mark them as edible to avoid accidents

Grape Tomatoes

Thornless Blackberries/Raspberries

Strawberries

Cilantro

Fennel (black licorice taste)

Dill
Nasturiums

Violets

Calendula

Sound

Water fountain (simple or elaborate)

Bells

Aspen trees

Chimes

Bamboo

Grasses
Birds - if you plant berries, they will come

This is a Works For Me Wednesday post. To check out other ideas visit Rocks In My Dryer.

Ty's Tuesday Music Picks

For your listening and viewing entertainment:


A little pick me up, he loves the middle part.


An oldie but goodie, he loves the extended version when they crack up at the end.


This is about 100 times better on the cd (buy it!) He loves the beginning when they say Oh Yeah! and this clip just doesn't do it justice.



You have to watch this, you may be moved to tears.
An amazing talent - and Ty doesn't normally go for this sort of thing...

Happy Tuesday!

Hospital Fun

Here's some pictures of Tyler enjoying the Vecta machine with his sisters.


I have got to get a better camera, or else stop taking so much thyroid. Drat, the shaking fingers!


Sorry about the poor picture quality on this one, Ellie is a moving target.



Did you ever wonder what fiber optic hair looks like?

I know it's a mean trick to cover his bald head with strands of light, but he loves us anyway.

We had an interesting morning today. We thought he might have to go up to Primary Children's (PCMC) for some TPA. It's an anti-clotting agent. I tried to give him his IV antibiotic, and it wouldn't go in - I also couldn't get any blood return on his line. I kept trying and eventually, it worked.

He's also been running a very low-grade fever for a couple days, but it broke and His normal body temp tends to be two degrees lower than most people.

Strings and things...

Ty's favorite song right now, hands down, is Queen's We Will Rock You. He loves us to hold his hands and bounce his elbows against the bed in time to the beat. It always brings a smile to his face, which brings a smile to ours. Hope you enjoy these videos as much as he enjoys listening to the songs.

He has an Ipod with a Bose speaker dock - which Santa brings you if you have to do chemo. We've filled it with a lot of his favorite songs. If you know of any songs with a great beat and a good guitar sound, let us know. We'd love to hear some new songs around here.



He also loves Jump, Jive, N Wail by the Brian Setzer Orchestra - in fact, he pretty much likes just about anything Brain Setzer. The more obnoxious guitar, the better.


Rock this town


I also found the entire version of I'll Fly Away that he likes - it is set to a slide show of artwork

And the kids?

I have had some of you ask how the other kids are holding up. It's pretty tough having either your mom or dad gone all the time. We are so grateful to our wonderful grandma, great-aunt, and neighbor for all of their wonderful support on the home front. They are really the ones who make it possible for me to be with Tyler the whole time. This is absolutely necessary as mistakes happen even when I'm there.

Just last night, a float nurse gave him another patient's antibiotic. It was the same one he should've gotten only double the dose - this has never happened before. He seems to be okay now (unpleasant night though), but it could've turned out much worse.

The morning before, while I was sleeping, they ran his antibiotic with the chemo - in the same line. They weren't compatible. Again, he was okay. He is certainly working his guardian angels overtime. Did I mention how grateful we are for all of your prayers on his behalf? Thank you, thank you, thank you. We know that he is being "looked after" and we are so appreciative for your prayers and good wishes.

Usually, I stay at the hospital Sunday-Friday afternoon and then Mr. Triumph is with Tyler until Sunday afternoon. I have been taking the kids out on the weekends. Sometimes it is just to the library, but we have also gone to visit Ty, or out to dinner, or to visit with family.

Their favorite activity is to head to the Dinosaur Museum. Ellie calls all of the dino skeletons "puppy," and of course, they all love the erosion table.

It has been very hard on the kids, and they mostly handle it well. I think sometimes that Ellie is a bit confused about who mommy is. The girls have learned a lot about compassionate service and are great helpers. Speilberg is becoming more independent and having to figure some things out on his own. I really regret not being able to be in two places at once.

We are hoping that Tyler will get an opportunity to participate with Make-A-Wish. I think he would love nothing more than to see a Huka performed at Grandpa's Marai in New Zealand, but the trip would probably be too hard on him. It may be that swimming with dolphins in Hawaii will be even more satisfying.

Or maybe he should use his to visit Heni in England and go to Euro-Disney. It was so great to see them when they were here. Any thoughts? He won't be able to go anywhere until he is cleared for travel, and at this point, surgery still hasn't been ruled out.

I am sure that most kids just wish for a cure and to have life as normal return again. If there was any way to guarantee it, that would be our wish.

Ty's Juice

Why the optimistic feelings lately? We want to tell you about something amazing that we would not have believed had we not seen it with our own eyes.

Earlier in the year, I mentored a class on Constitutional Studies. When Ty began his new chemo, I emailed my group of teachers to ask if anyone could help by taking on some of the boys in my group. I briefly explained the situation with Tyler.

One of these teachers emailed me about an alternative product, with lycium barbarum as its active ingredient. She said she knew someone who had been sent home to die with cancer and who was now cancer-free. She gave me his phone number. I researched the medical studies on it because I was skeptical, but intrigued.

The studies indicated a better effect on reducing nausea and boosting red blood cells when the goji fruit was cold processed rather than heat filled. There are several other benefits if you read the studies.

We had reached the point where we were willing to try anything because medical science did not appear to have the answers. Really, I think our exact thought was "Why not? It's just juice." Okay maybe it was more like, "Why the Heck not." (Keeping it clean for the kids).

We didn't let Tyler know that we were adding goji juice to his diet. (As I mentioned before, he takes all nutrition via his g-tube, completely bypassing his mouth/taste buds). We just gave it to him, starting with a low dose at first and gradually working it up higher.

At first, he broke out in red splotches all over his body and had really bad night sweats - we're talking completely drenching the sheets two times a night. (This is remarkable in that Tyler DOES NOT sweat - EVER. In fact, there is an accomodation for him in his education plan that there is always a fan directly in front of him on his bus and he is never on the bus longer than 25 minutes because he does not regulate his body temperature).

I called the woman who had recommended the product to us and told her that I thought he might be allergic to it. She felt that we were seeing a detox effect and should stick with it. I think she was right, as these effects only lasted about three days. By the fifth day on goji, the tumor actually looked much smaller. I grabbed the measuring tape and it had come from 31x25 cm down to 25x23 cm. I then gave Ty the goji juice with some alkalized water. An hour and a half later, it was measurably smaller - down to 23x20 cm. Amazing!

Because Ty had no idea what we were doing - it was just juice to him, there could be no placebo effect. We returned to the hospital 1 week after starting the goji juice and alkaline water for his third chemo round. The scans confirmed that he had lost 2 cm in overall volume - that's a huge change.

The latest scan from last Tuesday, shows that he has lost another 1-1.5 cm. We are encouraged by this.

Even our nurses were impressed by how much smaller it was. It used to look like he had swallowed a nerf football, but now it looked more like a hockey puck.

I suppose the doctors would say that the shrinkage is due to a delayed reaction from the chemo. I just find it hard to believe that when the change was so sudden and so close to adding the juice to his regimen. It goes to the hospital with us, and we don't care if anyone rolls their eyes at us - Ty is feeling better.

He is also no longer experiencing breakthrough nausea during and after his chemo treatment. Previously, we couldn't even move him for fear of triggering his nausea and gag reflex. His quality of life was horrible. I couldn't even hold him without him getting sick.

We just had to share our success. On the right is a link to the site where we buy our juice. Let us know if you'd like to try some for yourself. One thing to remember is that any goji that comes in a glass bottle has been heat pasteurized. Ty's comes in pharmaceutical grade bottles and has been cold-filled.

We welcome any questions you may have. It may be incidental, but he no longer suffers from high blood pressure or needs medication to treat it (at his worst, he was 176/116, but he averaged 140/100). Oh! and we noticed his hair trying to grow back about 3 weeks ago. It's white or blonde, but it looks just like peach fuzz.

The biggest difference we have noticed (other than the tumor size) has been in his mood. He is once more able to smile and laugh, and he feels so much better. The reduction in nausea alone has been worth it.

How cool is this?

Tyler has had one of these in his hospital room 3 of the last 4 times. He loves it, the fiber optic strands stay cool to the touch and change colors - they feel like raw, flexible spaghetti. The projector rotates a wheel with colored oil in it, making it look like there's a lava lamp on the ceiling, and the bubble tube has a switch hooked up to it that can change the colors. There is also a cd player and an aromatherapy station.

It's awesome and Tyler is entranced with it.