Sunday, August 30, 2009

One Gallon

There are a lot of things to figure out when your child is diagnosed with type 1 diabetes. It may take a few days, but after realizing that your child will be receiving five injections every day, one of those questions, eventually, is “What are we supposed to do with all of these used needles?”. I think members of the medical profession actually prefer to call them “syringes” or “sharps”, but you all know exactly what I’m talking about. We can’t just throw them in the trash because, technically, they are considered hazardous medical waste (what a horrible term to associate with your own child). But, there are going to be a lot of them, so what to do with them?

Thankfully, our lovely nurse friend/neighbor M came to our rescue (as she has done countless times, bless her). She works someplace where they deal with “sharps” all the time, and so they have a medical waste disposal service that regularly picks up their medical waste for appropriate incineration. She told us to put all of our used needles into a one-gallon (milk) jug, and when it is full, give it to her and she will dispose of it.

So, one more milestone has been reached by our family. T-Bear was diagnosed 109 days ago, and we have completely filled one one-gallon jug with used syringes. That’s approximately 545 injections.

Brother Bear ran our filled jug over to M with a heart-felt “thank you”, and we’ve started on a new sharps container. I’m not using a one-gallon jug this time. I’m an optimist, and holding out for an insulin pump by the end of this year, so I’ve just got a seltzer water bottle for collecting sharps in. We may fill it up entirely and have to start on a new seltzer bottle before T-Bear is on a pump, but NO WAY I’m going to give in and use a one-gallon jug again. No more one-gallon jugs for sharps. Mama Bear has spoken.

Time for a short commercial break. My eight-year old son has given himself approximately 545 injections in the past 3 ½ months. Please consider helping find a cure for type 1 diabetes by contributing to the Juvenile Diabetes Research Foundation if you can. Commercial break over.

And, one more milestone for our little T-Bear: he has begun testing himself. Four times per day, he stabs himself with a lancet, draws a drop of blood from his finger, and comes up with his BS reading. And, Brother Bear (10 next month) is learning to calculate appropriate insulin doses and draw them for his brother (under my supervision, of course). Kids are capable of doing so much more than we give them credit for.

Wednesday, August 26, 2009

What's In A Name?

It’s official. I can no longer, in good conscience, continue calling our youngest child “Angel Bear”. Henceforth, he shall be known as "BooBoo Bear".

On Friday evening I was mentally meandering about a possible post centered around the incredibly frustrating, eventful, creative, messy, befuddling day I’d had with HIM. Just a small taste of what I’d witnessed. About ½ hour before I was expecting Papa Bear to return from his business trip, I finally ran upstairs for a shower (this was after dinner). I’d been gone ten minutes, and was just about finished up, when Brother Bear knocked on the bathroom door.

“What?” I tried not to screech. I haven’t had an uninterrupted shower in almost ten years.

“HE just dumped a bottle of shampoo all over himself and the floor.”

How, exactly is one supposed to respond to that when one is dripping wet in the shower?

“Where did he do this?”

“In the study.”

Carpet. Great.

“And in the entry.”

On the wood floor. Visions of Papa Bear arriving home after an exhausting day of travel just to slip on a slimy substance on the floor and break his tailbone. Perfect.

“Sigh. I’ll be right there.” So much for shaving.

It wasn’t the complete disaster I had initially envisioned, but good enough. Two days earlier he had spilled dish soap on just about the same spot after deciding that he would use it to blow bubbles using a pump dispenser. When I get around to shampooing the carpet to get up the mystery substance spilled on yet another occasion, I shouldn’t have to use any carpet shampoo. So, I took HIM upstairs for a bath, him giggling the entire time because the shampoo was making his butt cheeks squish together in a funny way. How he got it in the back of his shorts, I can’t begin to imagine. Why he got it there, I don’t even want to know.

Other highlights from the day include bowling with grapes in the dining room, then squishing them where they lay. Taking an arm-load of glass bottles to the back deck to make a musical instrument (I wouldn’t let him set it up in the family room). Eating a bowl of strawberry jello with his hands, spilling half of it on the floor, then insisting on giving me a pat on the butt with his sticky hands. Skewering little tomatoes from the garden on a kabob skewer and them flinging them across the room at his brothers.

This was just ONE day. One day of many, many days. It’s just a phase... It’s just a phase... It’s just a phase... When I find myself too frequently looking at this child and asking “What in the *bleep* were you thinking?!?”, I zip on over to KitMama’s Penseive and remind myself that HE is not the only mess-monster child on the planet.

Tuesday, August 25, 2009


After patiently waiting...a while...I am pleased as punch to say the tile in the kitchen/breakfast area has all been laid. It's not grouted yet, but I hope that will be done this weekend. Regardless, it's better than trying to mop up spills on backerboard.

Papa Bear laying tile.

Our very sweet little breakfast nook :)
Happy, happy, happy.

Oh, and thanks, R, for the dining set and sideboard. They're perfect!

Sunday, August 23, 2009

Rufus Gets A New Shirt

Rufus is looking a little rough these days. He's been with us for over three months, since T-Bear's diagnosis, and has been deeply and persistently loved. He goes just about everywhere T-Bear goes. He was lost under a bush in the front yard for a couple of weeks (thank goodness we had a back-up bear), so he's been through the wash once. His clothes are looking a little rough, too. So, Angel Bear decided that he wanted to sew a new shirt for Rufus. He pulled out some yellow felt, I helped him cut out a very crude pattern, and after one false start by him, and cutting out a new pattern, I sewed it up. Rufus is thrilled. Brother Bear is now helping out with a blanket and pillow.

Thursday, August 20, 2009

High-Paid Divisiveness

“People are best able, and perhaps only able, to cross the many barriers of race, class, custom, and belief that divide them when they are able to share experiences that make them feel good. Only from these do they get a stronger sense of their own, and therefore other people’s, uniqueness, dignity, and worth.”

“What we need to pull our countries more together are more people who can afford to be polite, and much more – kind, patient, generous, forgiving, and tolerant, able and willing, not just to stand people different from themselves, but to make an effort to understand them, to see the world through their eyes. These social virtues are not the kind that can be talked or preached or discussed or bribed or threatened into people. They are the kind of surplus, an overflowing, in people who have enough love and respect for themselves and therefore have some left over for others.”

“Leaders are not what many people think – people with huge crowds following them. Leaders are people who go their own way without caring, or even looking to see whether anyone is following them. “Leadership qualities” are not the qualities that enable people to attract followers, but those that enable them to do without them. They include, at the very least, courage, endurance, patience, humor, flexibility, resourcefulness, determination, a keen sense of reality, and the ability to keep a cool and clear head even when things are going badly.

This is the opposite of the “charisma” that we hear so much about.”

From John Holt’s classic “Teach Your Own” (1981). John was really a fascinating man. I wish he were still with us.

I suppose I was particularly drawn to these passages because I am at a stage where I have just about lost all patience for the charismatic “personalities” with national programs who make their living breeding divisiveness, anger, fear, and rage among us. You know, the ones with the 30-lb bullhorns and no manners. The ones who bellow and screech insults over the top of anyone who attempts to open an honest dialogue which might just challenge one of their own cherished prejudices. The ones who just can't bear the possibility that someone they disagree with might just have an idea worth considering.

There seems to be a lot of confusion these days about what constitutes a leader. So, let me just spell it out, plain and simple. If you are blatantly deriding another individual in a public forum, whether television, radio, print, or whatever, because you're just not skilled enough in debate to put forth an effective and convincing argument, you are not a leader. If you are incapable of keeping your mouth shut long enough for your “guest” to complete a single sentence, much less an entire thought, you are not a leader. If you are so terrified of having a different view expressed on your show, so terrified that a single one of your “followers” might possibly be tempted to open their own minds to a new idea, that you hit the kill switch on your “guest” so you can have the last word, which is inevitably an insult or put-down, then you are not a leader. And, if you call the President of the United States a “racist” who “hates white people” simply because you disagree with a policy he is putting forward, you are not a leader. No, Glenn, you are not a leader, and you most certainly are NOT a statesman by any stretch of the imagination. You’re just a high-priced salesman with a big mouth and no manners who’s read a couple of books and thinks he knows all the answers. True leaders do not claim to have all the answers, they only ask that we set aside our differences long enough to find the answers together. Everyone else is just selling something. Like a book. Or two, or five, or ten. Or spots for commercial advertisements on their national show.

Let’s get this straight, people. Leaders are not in it for the money. If your favorite “leader” is making their living by fanning the flames of divisiveness among our citizenry, then they’re not a leader. They’re a “personality”, and they’re in it for the money. And they’re making their money by destroying our country and any chance we have of coming together to solve the considerable challenges we are facing. If you follow the money, whether it leads to a television commentator, a radio host, or a politician, it’s not going to take you to a leader. It's going to take you to a salesman.

Not that I have an opinion, or anything…

Monday, August 17, 2009

Iraqi Bundles of Love

I just had to pass this on (Thanks, G, for the link!). All you crafters with waaaaay too much stuff stuffed into your closets that will NEVER be transformed into anything useful, this is your chance to have that stuff put to good use. Bundle it up and ship it off to this big-hearted GI to be distributed to Iraqi's who are in desparate need of raw materials.

Check out the Iraqi Bundles of Love website for general information and updates. Check out the "what to send" link for...well...what to send. And, here's info on "building a bundle". That should get you started. THE DEADLINE FOR SHIPPING IS SEPT 7TH so bundles will arrive by Ramadan.

I'd write more about what an awesome project this is, but I've gotta go dig through three storage bins of raw materials and package them up....

Thanks for considering!

Sunday, August 16, 2009

For Ella...Curried Beef & Potatoes with Bakes

A long time ago, in a galaxy far, far away.....

Not really. Several years ago, before your little friend, Angel Bear, was born, we had a very nice lady (Michele) and her two sons living with us. She was originally from Trinidad & Tobago (the Trinidad side), and on occasion made this dish for us. She was gracious enough to show me how it's done. And, my little love bug, it contains NO dairy :)

Bakes with Curried Beef & beans on the side.

For the curried beef:

cubed beef

Boil the cubed beef in enough water and long enough to...well...cook it until it's soft. Add enough curry to make it curried beef. Salt as needed. Beef should be just about falling apart by the time you serve it...a couple of hours, at least.

For the curried potatoes:

one potato per person, cubed (skins on)

Starting to see a pattern, here? Boil the cubed potatoes until just under-done. Add curry and salt and cook until...well...done.

Note for those cooking for kids: I add a dash of brown sugar to cut the "bite" of the curry, making it a bit more palatable for those with less-than-adventerous palates.

Big ol' pile o bakes...aka carb fest extravaganza.
For the bakes:
4 cups flour (white)
1.5 tsp salt
4 tsp baking powder
Mix dry ingredients. Add enough water to form a ball (don't ask me how much that is). Knead for 10 minutes (yes, a full 10 minutes, and no, your breadmaker does not has to be by hand!). Let rest for 1/2 hour (really...this part is essential!). Cut and roll about 5" by 1/4 thick. Fry in hot (hot!!! almost smoking!!!) vegetable oil until breathtakingling golden brown. Bakes should "bubble" beautifully.
For the green beans
If you can't cook green beans on your own, I'm afraid I can't help you.
No forks or spoons are allowed on the dining table! This is a Finger Food Fest! The messier, the better! Rip off a bit-o-bake, use as a implement to pick up whatever else is in your plate, and shove it in your mouth. Napkins optional. Just pretend you're in Morocco.
Also, this is one of those recipes you might need to "watch and learn" as I did before you can perfect it....or even make it turn out as something most reasonable humans would consume. I'm still working on that part, though I LOVE this dish. Drop me a line if it's time for a bakes-and-curried-whatever-at-Huey's experience :)

Friday, August 14, 2009

Educated (5/29/09)

Without coming right out and asking, the doctor asked me if I was educated. I think I said something about “not formally, but I consider myself educated.” I suppose I could just have said “yes” and left it at that. Or, I could have said “self educated”, which is pretty much what I am. But regardless of my answer, I wasn’t put off by the inquiry because I understand that kids with chronic conditions that require on-going care have a better chance of making out well if their parents are college educated. Right or wrong, it’s just one of those indicators that seem to consistently spell “a better chance” for some kids. Out of concern for his young patient who would be dependent on mom and dad for care, the doctor was feeling out what kind of chance T-Bear had of remaining healthy in spite of his diabetes.

In his book In Defense of Food, Michael Pollan winds things up with a list of things to do if you want to eat better, and thus live better. One of those items is to “be like people who take vitamins”. Pollan cites a study which indicates that taking vitamins does not provide any demonstrable nutritional or health benefit, but demographically people who take vitamins are healthier than those who don’t, probably because they live a healthier lifestyle overall. That’s me with education. I think I live and behave “like people who are educated.” I hang out with college-educated homeschooling moms, I keep piles of books around, read voraciously, read aloud to my kids daily, and when any subject of interest or need arises I dive in and do the research. Just as a healthy lifestyle is an attitude and set of habits that may or may not include taking vitamins, being educated is an attitude and set of habits which may or may not include graduating from college or university. It is a pursuit of knowledge that does not end after you stop attending classes or get a diploma.

When our lovely neighbor, M, came over to check on us the day after we arrived home from Orlando, I told her I was dealing with T-Bear’s diagnosis by diving into learning everything I can about type 1 diabetes and effective management and care. There’s a lot to learn in a pretty short period of time, and some of the detail and subtlety may be out of many people’s mental reach, and definitely out of many people’s comfort zone, but I’m pretty good at stretching myself. I told M I’ve got the type of mind that gets off on gobbling up new data and information. Even when the subject is heartbreaking and living in our home, my mind is happy to be doing its thing. And, it helps soothe my heart by making me feel I have some control over the outcome. If I didn’t feel like I could understand this and make good decisions, I think I would rapidly sink into helplessness and hopelessness. That, for me, is the value of an “educated” mind.

If TJEd has taught me anything, it’s taught me that education is not about sitting in classes and writing papers and making grades and getting a diploma. It’s about feeding your mind, challenging your assumptions, being curious, and beefing up your intelligence. It’s about having a mind that contributes toward making the rest of your life work, and about helping to make the world work. It’s about learning every day of your life, and loving it. It’s about living a rich, deep, full, liberating life, inside and out. And, everyone can have it. It just takes some effort and commitment, and cultivating a joy of learning. And, the best part is, once you have it, you can pass it on to your kids.

Thursday, August 13, 2009

A "Taking One's Time" Book (7/8/09)

A week or so ago I picked up Victor Hugo’s Les Miserables and started reading. It’s been sitting on my “100 Greatest Books” shelf for a few months now, having been one of my monthly arrivals from The Easton Press, another of those incredibly lovely, wonderfully built books that makes up a very handsome and slowly expanding collection. The kind of book that is a pleasure to read just because it lies so firmly and pleasantly in your hands or on your lap. The texture of the cover, the flexibility of the binding, the sound the page makes as you turn it, the gold leaf, the font, the unique little illustrative prints... Oh, I seem to have wandered. Sorry.

At any rate, I actually started reading Les Miserables a week or so ago. I’m not sure exactly what I was expecting when I picked it up. It’s huge, so I suppose I was expecting a lot to be going on in the story. But there really isn’t, at least at this point. The entire first section is an exploration of the character “Monsignor Welcome”. I know from the film that Monsignor is a pivotal, but fairly minor character, and in the film we are rushed through getting to know him in favor of moving the story along. It’s kind of a shame, really, that our collective attention span has become so retarded that we can’t spend more than 10 minutes getting to know such an interesting and unique gentleman. But it is not just modern film that is guilty of browsing through characters, it is modern novels as well. Generally we get to know characters as much through their actions as through the author’s descriptions of them. Characters are dumped into the plot fairly rapidly without really knowing who they are until the end of the novel. I hadn’t really considered before the possibility of spending several days of reading time to get to know a character before any “action” takes place, and I sort of like it.

This is not a book that rushes itself. It is a book that takes the reader through a slow, pleasant stroll. It is a book to be read by candlelight at the end of each day, read aloud to loved ones after “retiring” from the day’s activities, sitting by the fireside with the snow falling outside. It is a “read through the winter” kind of book. A “having an affair with” kind of book. I imagine it will take me quite a while to finish it, if I finish it. If I can find enough quiet, meandering, still and lovely hours in my life to allow a proper reading. Imagine a world and a life in which we all were “at leisure” to indulge in such a book each day of our lives. Ahhhhh.

Monday, August 10, 2009

Magic Number 6.5

We just got back from T-Bear’s checkup with the ped endo, and it went GREAT! He had his first A1c test, and it was 6.5%. WoooooHooooo!

Okay, since most of you probably have no idea what that means, the A1c test is a key indicator of how well BS is controlled. Although we test four times a day, and his BS numbers have been on target most of the time, it’s still possible that he could be having spikes that are not showing up during those test times, or some other goofiness may be going on. The A1c test basically analyzes a drop of blood and can tell how often frequently there have been BS highs over the past three months. For a kid T-Bear’s age, you want to keep it 8% and under. Our Diabetes Educator said that 6.5% was perfect; right where we want it to be. I could have done cartwheels right there in the exam room.

Another bit of good news. We talked to our DE about getting a pump, and we’re another step closer. We’re going back in October to meet with the dietician, and at that point, if T-Bear’s numbers have remained good, we can probably get Dr. A to sign off on a pump. Then we can get into pump classes in November. By the time we’re trained, T-Bear will have reached his 6-month anniversary, so the insurance company should approve it. Wouldn’t it be awesome to be pumping by Thanksgiving?!?

Also, Brother Bear has decided to participate in the Panda Study. When we go back for our appointment in October, Brother Bear will come along to get enrolled in the study and have his bloodwork done. That should tell us whether or not he’s at risk for developing T1, and if he is, he’ll have bloodwork done every six months to catch it if it begins.

Onward and upward…

Saturday, August 8, 2009

The Pod, Day Two

Well, the Pod stayed on overnight. Yesterday afternoon we took the kids to the pool, and T-Bear was concerned about the tape coming loose in the water, so we took it off before setting off. We put it back on around dinnertime, and it's still on today (noon-ish) and holding up to slip-n-sliding. This Pod thing just might work out...

Thursday, August 6, 2009

The Pod

For those folks who are on insulin therapy, and are considering that perhaps they'd like to knock off stabbing themselves five times a day to get their fix, there is the option of getting an insulin pump. There's a multi-step process involved in getting a pump, including the all-important insurance company "okey dokey, we'll pay for that", and the endocrinologist's approval, meeting with a pump rep, training classes, etc. Even though we won't be eligible to start the process until six months after diagnosis, I'm planning waaaaay ahead (again). I already did some research on insulin pumps and compared notes with other T1 parents, and I decided that the OmniPod was the best choice for us.

Forging bravely forward, I've already taken step one. I got online, looked up OmniPod, and ordered a dummy Pod, which they very cheerfully sent to me with instructions and information. The dummy Pod looks and feels exactly like a working Pod, it just doesn't have all the working parts inside, doesn't accept insulin in the reservior, and doesn't have the delivery needle. The idea is to stick the dummy Pod onto your body and wear it for three days to see whether or not you'd like to have this thing semi-permanently attached to your person in lieu of injections.

Well, our first run didn't go so well. T-Bear usually takes a while to get used to things, which is why I'm starting this whole process so early on. After much humming and hawing, and a couple of false starts, we finally stuck the Pod onto his tummy. It lasted about three hours before he just couldn't take the "sticky" feeling anymore, and we took it off.

Today he decided he wanted a pump, so I explained that we needed to put the Pod back on him, and he had to leave it on for three days to be sure he could get used to it. Only problem was, the Pod is designed to stick once, and only once. So, I had to get some medical tape and tape the puppy on. I got it taped onto his tummy, and he decided he wanted it someplace else. I took it off again, and retaped it onto his thigh, which seemed to be much more comfortable.

The taped-on Pod.

It doesn't seem to be bothering him, and you can't even really see it under his jeans. (Yeah, I know, why is he wearing jeans in the middle of summer in Georgia?)

The buldge that isn't.
So, it's been on for a few hours now, and he seems to be fine with it. We're all supposed to go swimming tomorrow, and I imagine I'll have to take it off because medical tape doesn't stick so well in water. But, by the time T-Bear has his check-up on Monday, we should have a pretty good idea of whether or not he will be comfortable wearing a pump.
So, for those tech-geeky enough to be interested in the details of insulin pumps, there are four pumps currently available. My understanding is that all pumps consist of a reservoir/delivery unit, and a control unit. Three of the pumps are designed with the controller and reservoir attached to one another with tubing, etc. The challenge with this set up for a child is pretty obvious. Tubing can get kinked or pulled loose, and the controller has to be kept in a pocket or attached to clothing. And, the controller and tubing have to be detached for swimming, bathing, etc.
The OmniPod is an almost identical setup, except that the controller is a remote control. Really. Just like your TV. It's very cool. Since the reservior is water-proof, you don't have to do anything for swimming, bathing, etc. There's no tubing to deal with. And, mom can keep the controller with her to avoid an accidental delivery. You can see why moms and kids tend to prefer this type of pump. Possibly best of all for T-Bear, the insertion is automatic. Once the Pod is in place, you push a button to start it up, and it pops the needle in, sight unseen, and about as painless as you can get. The Pod can be worn for three days before you need to swap it for a new one, so we're talking about one small stab every three days, instead of fifteen over the same period. Very sweet. T-Bear is definitely tempted...

Tuesday, August 4, 2009

Trading Up

Thunder Bear got a new bike for his birthday, so his old bike was passed on to Angel Bear, who has mastered his new vehicle sufficiently to ride up to the neighbor's house.