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.

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.

Every Dog Has It's Day

Just imagining what this coming Sunday, April 1st, is going to be like . . .

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).

             Here’s what the Lord said to me through my wonderful BFF that day:

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.

Presenting . . . Our D.A.D., Rex!

Rex - at 9 weeks old, learning how to sit

16 days and counting 'til we get our little pup, Rex! We went and visited him in Virginia at Warren Retrievers (the breeder) and learned that "He likes to work!"  The trainer said that out of the whole bunch of D.A.D.s being trained presently, Rex is her favorite because he really likes to train.  When you tell him to sit with a treat, he actually keeps his little behind seated on the ground waiting for the next command (and treat!).  What an answer to prayer!  We have prayed and prayed for this little dog that the Lord will equip him with  superior scent recognition for blood sugars and a brain and personality that is ready to work and ready to learn.  He will have much to do taking care of Big Guy and Little Guy (and playing "fetch" in between!).  As we visited with Rex and his trainer, the boys were laughing as Rex ran around on the slippery floor, slipping and sliding into their shoes.

Big Guy, my husband, Little Guy - lovin' on Rex

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!

$20,000 - Holy Cow!

Our Diabetic Alert Dog (D.A.D.) costs $20,000.  That's a whole lot of cash to come up with, right? Riiiiiiight.

      "Why don't you just find a dog like your mom's or your
        neighbor's?"


      "If they (Sonja and Callie) can sense a blood sugar low, can't you
        just find another dog like one of them to do the job, that's
       cheap?"


I know you're asking these questions because these are the same questions we ask ourselves.

      "What is so special about a D.A.D. that it costs $20,000?" (you're
        asking that question too, aren't you? I KNEW it!)

Even though a dog may have a natural ability one moment to sense a blood sugar high or low, it doesn't necessarily mean that it will continue to try to "alert".  For instance, although we praised Sonja for her sensing Little Guy's blood sugar low that one time, she never did it again.  I even talked to Sonja about it:

      "Sonja, you did such a good job alerting us, go ahead and keep
        telling us when the boys are low."


Sonja just looked at me like I was crazy and walked off.  (And I felt a little crazy talking to her like that.  She is a dog, after all.)

The point is, a D.A.D. is very, very special.  Not only does the dog have to have a superior sense of smell, it also has to be smart enough to be trained to consistently alert its Human every time they have a high or low blood sugar.  In addition, the dog must be trained as a service dog to go anywhere with us - the library, the grocery store, church, sporting events in/out of doors, an airplane, hotels, restaurants, malls, schools, ANYWHERE!  This dog will accompany us anywhere we want to go and keep on alerting us of highs and lows the whole time.  It must be able to be trained how to behave well in public, under any circumstance.  Knowing Sonja, she's smart enough but is she willing to be trained?  That is the question.  The dog's personality is very important.  In the case of Sonja, she is an Alpha dog, meaning, for the most part, it's HER way or the highway.  No offense, to Sonja, I love her to death, but she can't be our D.A.D.  Maybe if we would have started with her as a little puppy, that Alpha dog sense she has about herself could have been "re-directed," but not so now.

Which brings us back to our D.A.D., Rex, our $20,000 Labrador Retriever puppy . . . We are purchasing our D.A.D. from Warren Retrievers who breeds Labrador Retrievers by artificial insemination, hand-picking the parents for scent detection and personality.  They give us a guarantee that our D.A.D. will begin alerting us within 15-24 hours of receipt of the puppy.  In addition, we have a 10 year warranty that it will not have certain genetic defects typical of Labs, such as hip dysplasia.  We receive our D.A.D. as a 10 week old puppy so that from the very start, this puppy acclimates to our family and its surroundings.  Since it is a little puppy, we will be training it ourselves with the assistance of Guardian Angel Service Dogs, the non-profit agency that provides our training and support.  Guardian Angel Service Dogs will visit us every 90 days for a 3-4 day training session for 12-18 months.  In between those visits, I will be following a checklist of training protocols to train our puppy, Rex, to be a D.A.D. that can go ANYWHERE.  You will see us with Rex everywhere the boys might go.  Rex will not attend school with them because we don't need him to do that.  We mostly need Rex for nights, as we're hoping that eventually we will be able to rely on Rex to alert us when the boys go low or too high during the night instead of regular blood sugar checks we presently perform throughout the nights.  Other people with D.A.D.s say that within about 6-8 months, their D.A.D. is alerting them to sugar highs/lows with 90% accuracy.  We'll take that!

My Hamburg Steinway piano is for sale

So, where do we come up with $20,000?  It's not like we happen to have $20,000 of cash lying around or anything.  Good question (was that one of your questions?  Well, it's one of ours!)  So far, Guardian Angel Service Dogs has received some donations from family and friends and made a note on their donation to go towards "The Mullins Dog".  These generous folks have received a tax deduction from Guardian Angel Service Dogs for their donation towards our dog.  In addition, we have various projects going on to earn some cash.  I've put my Hamburg Steinway piano up for sale, waiting for just the right buyer, I'm looking into selling some heirloom jewelry and other items that might bring in some cash, and I've started this blog, which earns me money every time you read it! (that's a sweet thing!).   We're trusting the Lord on all this.  Bits and pieces come in in interesting ways - just yesterday our car/home insurance company (no names mentioned) just got sued for fraud and had to send us a refund check for overcharging us; there's some more cash that just "fell into our laps" which will go towards getting Rex.  As much as I wish we'd get some big fat check in one, fell swoop, I am experiencing joy in the process of waiting and seeing what the Lord has planned.  It's just another adventure in the journey we're on.

I hope this fills you in a little more on what all is entailed with our D.A.D.  I love hearing from you and hearing your questions.  It gives me more to write about!