Oh so long . . . . It's been so long since I posted anything about Rex and our Diabetic Life. Why? Because there is so much to be done to make this process proceed. Amazing alerts happen ALL the time with Rex in the lead, but he's a puppy! And puppies are a ton of work . . . a ton of work.
I am posting a video that we haphazardly taped while on vacation at the beach with our many relatives - 26 or so of them in total. I have my handsome, helpful and steady-handed nephew, Taylor, as videographer - thank you Taylor! You did a marvelous job.
Now before you get to watch it, a little preface is needed. If there are any dog trainers out there reading and watching this post, please be forgiving with your comments - we did a lot of stuff wrong in this video which we later learned from our trainer two days later - i.e. don't ask "Is it a high?" (he's too young to know that yet), we were supposed to give him his treats for the alert IMMEDIATELY, as in within 5 seconds of taking the blood sugar (I forgot the bag or treats - oops!), and we're supposed to whoop and holler when he alerts and is correct (which we didn't - I was too preoccupied with getting this on camera to do everything right). Please forgive me, forgive Rex and just watch the video.
The point of the video is to show you that Rex can alert from AT LEAST a distance of 1 block while being in one house and the boys being inside of another house. (He actually can alert from further distances than that, but most people won't believe that.)
One last word before showing the video - Rex actually alerted by whining and yelping inside our beach house - I did not get that on camera. After he alerted, I scrambled to get the video rolling and that's why I asked that pitiful question, "Is it a high?" and then he gave me his paw. That part is still being trained in him. He is coming along with it, but it's not quite there yet. Both boys were actually low and had to eat a snack to keep from going lower after Rex alerted to them in the other beach house. Rex smelled their lows.
Here goes . . . watch and be amazed . . .
http://www.youtube.com/watch?v=j-esMdn7LZ4
Sunday, July 22, 2012
Tuesday, April 24, 2012
Life is Hard
I haven't blogged in such a long time because life has just been too hard. The training of a Diabetic Alert Dog is very hard during this puppy stage. We get glimpses of his greatness with the alerts he already does, but the in-between time is exhausting and frustrating. Parents of D.A.D.s told us that for the initial 6-8 months we'd be doing more blood sugar checks and getting less sleep. This was hard to imagine as it seemed we couldn't possibly exist on any less sleep or do anymore checks than we were already getting and doing, but those parents were right. We are completely exhausted, beyond exhaustion actually, and, it's blood sugar checks galore.
When I get this exhausted my world seems to crumble in on me even more than usual. During a cold, rainy, Sunday afternoon, 8-year old soccer game, I overheard a sweet mama whisper comfortingly to her little daughter, "After your brother's game, doesn't a hot chocolate at McDonald's sound good? Let's have some hot chocolate." These kind of whispered sweet-nothings to one's child are what put me under the table. I know this is hard for anyone to imagine how I could feel so sorry for myself and my children with such a comment, but it does. It does because, when I'm tired, these simple realizations slap me in the face with the fact of, "We can't do that. We can't just go out and get a simple, little, hot chocolate because it'll throw our night time sugars out of whack, and Little Guy will throw up and have a raging, bad stomach ache because of the gluten in the hot chocolate." This easy, simple pleasure, picked up at a drive-through window that everyone else does and barely even thinks about as a pleasure, is denied, denied, denied for my boys who would positively LOVE a hot chocolate at 6:30 p.m. after a freezing, cold, rainy soccer game. That's why I hate these diseases. Diabetes and Celiac Disease STINK! They stink like rotten tomatoes, like week old garbage cans, like dog poop covered in flies, like chunky throw-up on the sidewalk. I hate them.
A lot of people would say to me, "Well, at least your kids don't have cancer." That's true, and when I'm not so terribly exhausted, I can look on the brighter side of things and be grateful for what we do have (like the ability to even be out on the soccer field, although even that is darkly overshadowed by the CONSTANT concern of blood sugars being out of whack and my son possibly collapsing out on the field because his sugar went too low, but still he's out there, one would say, right?). Anyway, when I'm this tired, what I want to say is, "Well, at least you can go pick up a hot chocolate at McDonald's at the drive-through window and be comforted by its taste and warmth on a rainy, cold day when you have cancer." I'm being ugly, I know. A child with cancer wouldn't even be able to hold the hot chocolate down or enjoy it, so I'm not even being realistic, and certainly not sympathetic. I'm sorry, so very sorry. There is so much suffering out there, terrible, painful suffering in this world. This is my heart of hearts, sometimes, the heart I have to go to Jesus with and confess the ugliness to.
There you have it, my deepest thoughts, my confession, my selfish, ugly thoughts and my need for Jesus to wipe it all away and renew my spirit. Come Lord Jesus, Come.
When I get this exhausted my world seems to crumble in on me even more than usual. During a cold, rainy, Sunday afternoon, 8-year old soccer game, I overheard a sweet mama whisper comfortingly to her little daughter, "After your brother's game, doesn't a hot chocolate at McDonald's sound good? Let's have some hot chocolate." These kind of whispered sweet-nothings to one's child are what put me under the table. I know this is hard for anyone to imagine how I could feel so sorry for myself and my children with such a comment, but it does. It does because, when I'm tired, these simple realizations slap me in the face with the fact of, "We can't do that. We can't just go out and get a simple, little, hot chocolate because it'll throw our night time sugars out of whack, and Little Guy will throw up and have a raging, bad stomach ache because of the gluten in the hot chocolate." This easy, simple pleasure, picked up at a drive-through window that everyone else does and barely even thinks about as a pleasure, is denied, denied, denied for my boys who would positively LOVE a hot chocolate at 6:30 p.m. after a freezing, cold, rainy soccer game. That's why I hate these diseases. Diabetes and Celiac Disease STINK! They stink like rotten tomatoes, like week old garbage cans, like dog poop covered in flies, like chunky throw-up on the sidewalk. I hate them.
A lot of people would say to me, "Well, at least your kids don't have cancer." That's true, and when I'm not so terribly exhausted, I can look on the brighter side of things and be grateful for what we do have (like the ability to even be out on the soccer field, although even that is darkly overshadowed by the CONSTANT concern of blood sugars being out of whack and my son possibly collapsing out on the field because his sugar went too low, but still he's out there, one would say, right?). Anyway, when I'm this tired, what I want to say is, "Well, at least you can go pick up a hot chocolate at McDonald's at the drive-through window and be comforted by its taste and warmth on a rainy, cold day when you have cancer." I'm being ugly, I know. A child with cancer wouldn't even be able to hold the hot chocolate down or enjoy it, so I'm not even being realistic, and certainly not sympathetic. I'm sorry, so very sorry. There is so much suffering out there, terrible, painful suffering in this world. This is my heart of hearts, sometimes, the heart I have to go to Jesus with and confess the ugliness to.
There you have it, my deepest thoughts, my confession, my selfish, ugly thoughts and my need for Jesus to wipe it all away and renew my spirit. Come Lord Jesus, Come.
Tuesday, April 10, 2012
Home!
Little Guy walking Rex with our trainer in Belk Department Store |
Wow! What a week it's been! Rex arrived on April 1st as planned, no joke, and we've been working ever since. He has so much to learn and so do we! He is a wonderful dog and has alerted us of high and low blood sugars too numerous to count all the while. We're in the midst of potty training, crate training, staying "under" while we eat at restaurants (that means, staying under the table without crying or whining), walking beside us in stores, restaurants and parking lots and doing all this while alerting us of highs and lows. If your head is spinning thinking of all that in one week for us and a little puppy, then you're spinning just like us - it's been a whirlwind, to say the least.
Truth be told, I'm worn out, so I won't spend much time posting today, but suffice it to say that he is an amazing little diabetic alert dog and wonderful companion. Here's a picture of him after a long day of "alerting" and learning to behave while in public. We all sort of feel like that here.
Friday, March 30, 2012
Friday, March 23, 2012
What Your Mama Never Told You About . . .Corn
8 more days until Rex, our D.A.D., is delivered to our home
. .
In the meantime, I peruse the left side of my blog and take
note of the fact that I’ve written nothing about food allergies/celiac disease,
etc., like I pronounced in my little “About Me” section of my blog. This is a topic I’m not sure your average
drop-in reader wants to spend time reading about. Why?
Because it means accountability, hard work, deprivation of the simple
pleasures of life (like popcorn and frozen yoghurt, to name my personal
favorites), stuff like that.
So, there’s probably a few who, right about now, are rolling
their keyboard cursor on up to the top right corner of their screen to hit that
little red “x”, right about now . . . WAIT!
I have a really good story though! You just might want to hear it!
Ahhhh. . . . I guilted you into coming back and listening to
this food allergy story of mine. Take a
seat. You just might learn something (or
not?).
Here goes . . . .
Big Guy and I were at a follow-up doctor’s appointment when
the doctor said, “How long has he had this rash?”
“Oh, I don’t know. It
comes and goes, seems to get worse in the sun.
I just thought it was from getting too much sun,” I replied.
“I want you to get some blood tests run. I’m concerned that it might be a condition
called dermatomyositis,” she said with all seriousness. She wrote down the name “Dermatomyositis” and
the blood test “ANA” and “CPK” on a piece of paper and handed it to me with the
final words, “Please get those blood tests, and if you have any questions about
this, feel free to call me.”
“Oh brother!” I
thought to myself. I am not going to get
this boy poked AGAIN by some big needle that he hates just for a little sunburn
rash around his eyes. Despite the 24,511 needle pokes/insertions in the past 6 ½ years my Big Guy’s had (that is
actually how many needles have been inserted into him between all his blood
sugar checks and pump site changes he’s had since he was diagnosed at age 5 1/2),
he still hates, and I mean HATES, getting his blood drawn. We were not going to do that, no way.
I completely dismissed the doctor’s recommendation, threw
away the little piece of paper with the word “Dermatomyositis” and put it out
of my mind, or at least into the far back recesses of my mind.
By the late part of summer, after a lot of pool days and hot
games of playing basketball in the sun, lots of cool yoghurt smoothies and G2
Gatorade bottles, Big Guy’s “sunburn rash” was getting redder and redder. We kept loading on the sunscreen, especially
around the eyes where he was reddest, but to no avail. The “sunburn” was even worse. It was that little piece of paper imprinted
in the “far back recesses of my mind” that kept popping up in my mind. “Dermatomyositis” – hmmmm. “I wonder what that is?” I thought. “Maybe I should just look it up to be sure I’m
not missing something important.”
Well, needless to say, “important” isn’t quite the word for
my thoughts as I read the results of my Google search. Shall we say, “shocking”? When I found out it was an auto-immune disease
in the family of lupus that can leave a person bed-ridden, I was floored. Bed-ridden, muscle cell disease, auto-immune
disease, steroid treatments? This could
not be happening. Didn’t we already have
enough going on? My son lives to run and
play sports! You can’t take this away
from him too!?
“Uh, Dr. M.? This is
Susan, the mother of (Big Guy) and I’m going to go ahead and get those blood
tests you recommended a couple of months ago, but I’ve lost the piece of paper
you gave me. Could you tell me what they
are again so we can get that taken care of?”
Dr. M. – “I’m so glad you called. Yes, I’ll call in those tests for you. I’m really glad you’re going to follow-up on
that. I’ll be looking for the results
and will get back to you.”
Within a week we got his blood drawn (Needle #24,574
inserted into him by then – just had to insert that here to give you an idea of
what my boys go through each week).
A few days passed, and it was a Sunday afternoon, we’d just
gotten back from church and lunch. I
picked up the phone and heard the three beeping dial tones, indicating I had
messages. “Susan, I got those results
back for (Big Guy) and wanted to talk to you about them. Could you please call me at my home number or
my cell number today?”
This was my son’s doctor.
This was Sunday. This was a
message to call my son’s doctor on a Sunday, on her cell phone, on her home
phone, anyway to reach her TODAY, a SUNDAY.
In no way could this be good news.
I hung up the receiver from voice mail, my hand shaking. No.
This cannot be. No way.
Now here comes the amazing part of this story:
Ring-a-ling-a-ling! No sooner had I hung up the phone when it
started ringing. It was one of my BFFs –
“Hey! I had to call you. We were at church today and we were singing
this song and tears just started streaming down my face because I just started
thinking of you and all you go through and this verse from Deuteronomy 20:3
came up, and I felt like I should share it with you.” (It had been a busy week and we hadn’t
talked, so she knew nothing about the possible dermatomyositis diagnosis, and
thus had no idea what recently had “popped” up in our life).
Do not be fainthearted or afraid; do not be terrified or give way to
panic before them. For the Lord your God
is the one who goes with you to fight for you against your enemies, to give you
victory. Deut 20:3
Oh my Lord! I read
those words now, again, and can’t begin to explain to you how comforting those
words are to me now. How much the Lord
knows about us! And How He Cares! I was on the brink of pure panic, and the
Lord was recognizing that in me and telling me He was with me to fight
for me against my enemies (all
these diseases we faced) and to give us
victory! And He said all that to me through my BFF and
at just the right moment. Awestruck.
But, unfortunately, my response was not so “noble” that
Sunday afternoon on the phone with my BFF. In fact, it is down-right embarrassing. Here’s what I said back to her:
She almost didn’t finish reading
the Old Testament passage in Deuteronomy before I blurted out, “Don’t tell me
this! I can’t hear this! If you tell me this, then it means that what
I dread is happening. I think (Big Guy)’s
doctor is calling me today to tell me that the blood tests for this horrible,
auto-immune disease called dermatomyositis are positive.”
Now, isn’t that a strange response?! How embarrassing. Oh, me of little faith! My BFF was wise enough to just listen to my
worries about what this doctor’s call on a Sunday could possibly mean and then
gently reminded me, “But you do have
this Word from the Lord now. He knows
what you’re going through and He’s with you!”
“Yeah,” was all I could respond. . . . oh me of little faith.
Back to the doctor’s call . . .
I called the doctor back, and sure enough, the results for
an auto-immune disease (different than diabetes) were positive, but “further
tests were going to have to be done to give a definitive diagnosis.”
Back to the lab with Needle #24,637 (1 week later) inserted
for another blood draw.
Further blood tests were still inconclusive, but for lack of
better testing procedures and the reddened eye rash continuing to worsen before
our eyes, the rheumatologist and the dermatologist felt the need to be
proactive in some way to try to postpone further symptoms of this disease. The medicine Plaquinil was suggested as “preventative”
medicine for the disease. I just didn’t
feel right about him taking a medicine with some possible serious side effects
when no one was very sure what was going on.
So, I asked them if I could take the “alternative” route and go to an “alternative
doctor” who might approach it more from a diet perspective. Both doctors agreed hesitatingly, so off I
went.
I found an osteopathic doctor. With this doctor we began our de-toxification
diet. And boy, was it tough. Imagine getting a 12 year old boy to
eliminate all dairy, all bread/pasta, all tomatoes (no pizza, no spaghetti),
all soy, all meat, all caffeine, all corn.
Basically anything and everything a pre-teen wants to eat. (Celery, anyone?) It was tough.
But my awesome Big Guy hung tough and persevered through the diet. Remember that accountability, hard work and
deprivation I mentioned at the beginning of this entry? He was all about that and more. I couldn’t have been prouder. And my husband did the diet with him to give
him solidarity. He couldn’t ask for a
better Dad.
What we found out from that de-tox diet was that he was
allergic to corn. Corn! All those cool yoghurt smoothies and G2
gatorades all summer long were full of corn!
Who knew?! Start reading those
labels people. You’d be surprised how
much “corn” you’re actually eating, and FYI “maltodextrin” is a corn-based
somethin’-or-other.
When he eliminated “corn” from his diet, his eyes “mysteriously”
lost their reddened sunburn look, he started feeling better with more energy (I
didn’t even know he’d been feeling bad in the first place!) AND his ANA blood
test is almost completely back to normal, signifying he’s no longer fighting an
auto-immune disease, apart from his diabetes.
We were amazed. And so were the
doctors!
Be with us, the
Lord is.
Fight for us, He does. Comfort,
always. Victory, Yes! Amen.
Friday, March 16, 2012
Presenting . . . Our D.A.D., Rex!
Rex - at 9 weeks old, learning how to sit |
Big Guy, my husband, Little Guy - lovin' on Rex |
Wednesday, March 7, 2012
The Lurker
**Note: Although our puppy has been chosen from a
litter for us, we haven’t actually gotten to bring the puppy home yet – he’s
still with the breeder until the end of March**
It was a day filled with running, running miles for track
practice for 1½ hours. My Big Guy does a lot of sports: football, soccer, basketball and now track,
and he’s quite competitive, so he’s always trying to be ahead of the pack. That means he runs hard. He eats a lot and runs a lot. He runs a lot because he can, but also because
he eats a lot. Eat, run, eat, run. That’s his cycle. It has to be, to survive the teenaged years of
diabetes. Now, of course, I’m proud as a
peacock of him (see my feathers spread!), and feeding him ‘til he’s chock full
and watching him run brings me much satisfaction in the form of a proud mama grin
on my face, but lurking behind that happy stomach and those speedy legs on the
soccer field or basketball court, sits a disease called Diabetes, we’ll UN-affectionately call “the
Lurker”. Oh, how I wish I could knock
that big fat Diabetes out of the ball park!
But linger on It does. And oh,
how it lingers, for hours on end into the night, wreaking havoc on a young boy
who likes to eat and . . . who has
to run.
It’s 9:33 p.m., a little past bedtime for Big Guy, and the
never-ending, not-so-subtle, parental mantra “Why don’t you check your blood
sugar,” butts its persistent head before his
hits the pillow. Blood sugar is 66. Darnit, he’s low. Time to drink, time to eat, time to decide
what to do to get that sugar right before the
Lurker makes its claim on my Big Guy.
9:47 p.m. - drinks a little
juice and he’s now up to 80 (back to “normal range,” so they say). He eats a piece of bread worth 20 carbs and
gives only ½ of a bolus of insulin. This
is risky, but seems reasonable at this stage in the “game,” so he says his prayers and goes to sleep. “I love you. Good night!” I
whisper, and I say a prayer for good blood sugars tonight.
10:30 p.m. Unsure of
whether we made the right decision, I re-check his sugar. Now it’s 77!
Going down?! What the heck! It’s that stupid insulin. I never should have given him that. The
Lurker has kicked in and is on its way to stake its claim on My Guy. Another juice box, 15 grams of carbs; this should
hold him.
11:00 p.m. . . .
blood sugar 120. Hah! We beat the
Lurker. Sugar is going up. Now I’m going to lock it in with a couple of
prunes (“Good fiber, just the right amount of carbs,” I shakily try to convince
myself). No bolus of insulin this
time. I’m not falling for that
trick! It should work, shouldn’t
it? This is where I have no idea what’s
happening. How long will the effects of
track practice, 8 hours earlier today,
have on him? I’m never sure.
11:30 p.m. . . . blood sugar is now 119, going back down, and
he’s drenched the sheets with sweat. Not
a good sign. The Lurker is beating me to the punch line. WHERE IS THE DOG WHEN I NEED HIM!? This is when I realize , I AM the dog. I am the one who is “sensing” these lows and
trying to catch them before he drops down into a seizure or some worse state
that I won’t even mention. Now I get
really serious and start messing with the temporary basal rate on his insulin
pump. I’ll put him at 30% less insulin
for 3 ½ hours and see what happens.
11:45 p.m.. . . . blood sugar is 126. The sweating has stopped and he seems stable. I think to myself, “If I had the dog, he’d be
alerting me if Big Guy is dropping down again and I could go to sleep, at least
for an hour or two, without worrying.”
But the dog isn’t here yet. It’s
still just little ‘ole me, doggedly (all
puns intended) checking and re-checking, trying to decide if he’s “safe” enough
to leave alone or not. I decide to set
the alarm for 1:00 a.m. and say a prayer to the Lord asking Him to wake me earlier
if Big Guy needs it.
1:00 a.m. . . . .“BZZZZZZ.”
I stumble out of bed, tip-toe into his room, armed with his glucometer, flashlight in hand and prick his finger for the seventh time in the last 3 ½ hours. This time it reads 179. Good enough.
No sweaty sheets. I’m confident he’s
not going down this time.
The Lurker has
taken another back seat tonight. Not
tonight. Not tonight!
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