It's been a doggone crazy week!

We’ve had Scout at home with us now for nearly two weeks, and it’s definitely been an experience. Not that we didn’t already know this, but diabetes alert dogs are not animatronic creatures you can turn on and off as you need them. They’re sensitive, intuitive, and because they lack the ability to actually speak, you find yourself trying to read them – and often failing (unless maybe you’re a doggie behavior expert, which I am not). Like kids, they may test their limits with you, and each person in your home individually. 

Cuddling at SeaWorld

Adding extreme complication, we spent five of the seven days of our vacation (which began the day we picked up Scout in Southern CA) at theme parks, and the 7^th day was spent in the Emergency Room when Sarah developed a tummy bug along with high ketones. Scout seemed concerned, and his behavior was telling me something was wrong, but her bg was fine and I couldn’t do much about the ketones except push carbs, insulin and fluid and wait for them to subside. On the way home, ketones finally banished, Scout was able to catch a couple of high blood sugars, just as they crossed the alerting threshold (Yay Scout!). 

Scout is worried, Sarah is miserable

For the next three days we had Christmas insanity. Scout spent extra time in a crate to keep him distanced from most of the craziness. Sarah was sick with fever and high ketones again on Christmas eve morning/afternoon, and, as she was absolutely bound and determined to sing for a church Christmas eve candlelight service for which she had committed, she slept, drank, ate when she didn’t want to, and took lots of Tylenol in an effort to get back on her feet in time for her song. Not even able to get out of bed in the morning (literally, the ketones made her whole body hurt so bad she couldn’t even walk), she finally rose in the mid afternoon, and made it to the church at 6:30 to practice her song (as she’d missed the practice time that morning, see above re miserable child with fever and high ketones).

I couldn’t believe she pulled it out, especially as sick as she’d been. She’d lost 4-5 pounds over the previous three days. She was tired and not able to take breaths as deep as she usually would for such a challenging piece. But she did it! If you’d like to see her performance, click below:

Yesterday we finally got back to something that looks like normal. Scout had been home without any significant activity or distractions for two full days – taking nice long walks with my husband to keep him active. Sarah went to a friend’s house for a few hours in the afternoon. In the evening, as we were preparing to take Sarah to her theater rehearsal, Scout alerted. When I say “Scout alerted”, I don’t know what you’re picturing, so let me paint a visual.

Scout spends most of his time in the house on a raised mat which we call his “place”. His job is to stay there, except when we take him off “place” for an activity such as eating, drinking, going potty, or some structured play time. Scout was lying down quietly on “place” when I noticed him begin to move. He stood up and lifted his nose high in the air, nostrils flaring. He sniffed the air, and then bounded across the room to the stool where we had placed the bringsel (a sort of stuffed log that is his cue that we need to check Sarah’s bg).

We checked her bg, and she was 217. We asked Scout "what is it?" - and he waves to tell us she's high. Scout was rewarded with lots of love, and we took him through the house to have him alert, and be rewarded by, everyone in the family. This is important because we want him to know he can alert to everyone, not just whoever he is most familiar with.

Scout is waving at Sarah after alerting. She's high.

Once the reward time was over, we placed him back on “place”, put the bringsel back on the stool, and went about our business. Scout alerted again about 30 minutes later, and her bg was 230. Scout is learning that he can’t constantly alert – which is a good thing because while we can fix low blood sugar rather quickly, there is no quick fix for high blood sugar. Sarah had eaten a Tamale for dinner a few minutes before, so her bg was up to 230 – not a surprise. We left Scout at home, in the crate, while I took Sarah to rehearsal. When we returned and put Scout back on “place” he alerted again almost immediately. Sarah’s bg was now 268.

As I’ve probably mentioned before, we are far from dog experts. I don’t have the intuitive understanding of the canine mind that Scout’s trainers do. I rely on a ridiculous amount of communication and questions to try to get an idea if we’re doing things right or wrong. We definitely have a lot to learn, and I am doing my best to document what we learn in an effort to make it easier to remember all these little tips and advice and to hopefully catalog what I learn to help others in the future. Bringing home a DAD isn’t all fun and games. It is fun and very cool, but it’s probably more work and head scratching than most people expect.

That said, it’s also very cool to have a dog that lives and breathes to catch those off blood sugars and receive his praise and reward. While he will never take the place of regular blood sugar checks (and we don’t expect him to), he will help to catch highs and lows that we didn’t expect, before they become a serious issue.

We have Scout home with us for one more week before he goes back to Southern CA to finish his training. Our hope is that he will be ready to come live with us full time in mid March. 

Stay tuned!

Sleepovers and diabetes

I seriously haven't blogged much lately, but hey, I have 10 minutes before I need to leave for the rest of today. Plenty of time to do.... something.

Last night was the first night in a very long time (about two years) that Sarah slept over at a friend's house. I know, this doesn't sound remarkable at all. But for a child with type 1 diabetes, it actually kind of is. Nighttime is the longest period of time in any 24 hour period where a child isn't checking blood sugar regularly. As the child is also totally zonked, it's also a time where they're less likely to feel a low blood sugar - so keeping nighttime safe takes some finesse.

• A lot of parents won't ask a child with diabetes to spend the night, as it's more work and more responsibility.
• As the parent of a type 1 child, I will only allow Sarah to spend the night at a home where I know and trust the parent(s).

Last night went great. Sarah was low and dropping at bedtime (an interesting change from the high blood sugars she's been having lately - diabetes always manages to surprise me!).

The wonderful parent and I texted back and forth. 

Sarah and I texted back and forth. 

All it took was two small snacks and a 4 hour reduced temp basal (the insulin she gets 24/7 as opposed to meals), and she slept soundly and safely.

Even more importantly, she got to spend time with a good friend and experience some diabetes independence in a safe environment. All in all, I think she really needed that.

Now, I wonder how said parent would feel about keeping a large yellow Labrador overnight as well...

Just because...

Just because I am diabetic

Doesn’t mean I can’t eat sweets

Doesn’t mean I can’t do sports

Doesn’t mean I am over weight

Doesn’t mean I am less healthy than you

Doesn’t mean I can’t do what you can do

Doesn’t mean I ate too much sugar

Doesn’t mean I can’t fulfill my dreams

Doesn’t mean I am lazy

Doesn’t mean I am contagious

Doesn’t mean I don’t take care of myself

Doesn’t mean I am going to die young

I am glad I am who I am so

DON’T STEREOTYPE ME!!

(Written by Sarah Gonzalez - Age 13 - 10/24/2012)

The DAD Journey - Bringing a Diabetes Alert Dog into your home

Sarah and Scout training at the local college library

Advancements in diabetes management are on a fast track. New pumps, new CGM’s, an artificial pancreas on the horizon, and diabetes alert dogs.

Wait.
What?
Dogs?

Yes! For many families, Fido has become an important part of diabetes management.

Dogs have long been known to have superior, amazing, spectacular sniffers. They walk through airports and sniff for drugs and explosives. They search for missing people by smelling a piece of clothing. Dogs play an important role in disasters such as hurricanes, earthquakes, bombings, and volcano explosions. These amazing animals can find humans in the most difficult conditions imaginable.

So why not train a dog to alert to a change in body chemistry? It makes so much scents! (That pun was impossible to resist)

While I am certain that dogs of diabetic owners have been naturally alerting (even my Pug has shown an ability to sense when my daughter’s sugar is off) for decades, it wasn’t until relatively recently that organizations and people began to intentionally train dogs for this amazing mission.

Dogs4Diabetics (D4D), located in sunny California, may hold the key to the origin of diabetes alert dogs. See their website for the full story. D4D began taking applications for diabetes alert dogs in 2004 and now, 8 years later, has 80 teams in service. They have a system very closely related to Guide Dogs for the Blind, taking an approved applicant, providing over 100 hours of classroom and field training, and provide ongoing support and assistance to teams. They only work with mature dogs, providing qualified diabetics with a Service Dog ready to go to work, to school, to the mall, or to Disneyland.

They weren’t alone in this noble mission for long...

Over the last several years, particularly as parents of children with diabetes discovered the successes of diabetes alert dogs, the need for these dogs, and trainers, has blossomed into a growing industry with far more applicants than available dogs. If you do your research, you can find everything from a scent imprinted puppy for self-training to fully trained alert dogs ready to jump on the school bus and attend high school. Costs vary widely as well, from under $2,000 for a scent imprinted puppy to many thousands of dollars for a fully trained alert dog. Some organizations with large grants and donation bases are able to provide fully trained dogs for as little as a minimal application fee.

Why do we need Diabetes Alert Dogs?

Diabetes is scary, and stories of worst case scenarios haunt parents, especially those of newly diagnosed children. Parents are scared and sleep deprived. We want anything and everything that will make our children’s lives safer. We want the latest pump and CGM, we want the best insulin and the newest and most accurate meter. We want a dog that will jump up and down, ring a bell, spin in circles, sneeze in our ear, and perform cartwheels in the middle of the night to make 1000% sure that we are awakened to any potentially dangerous low blood sugar. 

And we are willing to do whatever it takes to get that dog home with us, to keep our babies safe. 

The difference between an insulin pump and a diabetes alert dog is that the insulin pump is covered under the FDA, provided by prescription and under the supervision of a physician, and guaranteed to work or be replaced within 24 hours.

Our desperation makes us vulnerable.

There are wonderful DAD companies out there, managed by people who care about our children and are training dogs because they truly love their work.

There are also unscrupulous villain’s who would part you with your money.

Heaven Scent Paws is a perfect example of such an organization. Incorporated as a non-profit in 2004, this company advertised “highly trained diabetic alert dogs”, and only required a $6,000 non-refundable donation to the non-profit before a family was accepted into the program. Families were not provided an opportunity to review the contract until after they’d raised the required amount – at which point families were compelled to continue or risk losing all they had invested.

The desperation of parents has long been a magnet for the unscrupulous, but there are ways to protect yourself and ensure your diabetes alert dog adventure is a positive one.

• Read the contract – It’s common sense. You should never give any entity or business your money until you read and understand what you are going to receive in return. Better yet, hire an attorney to review the contract. If you are going to invest thousands of dollars, doesn’t an extra couple of hundred for a thorough contract review make sense?

• Ask questions, preferably in email, and keep notes and documentation of the answers.
• Understand under what (if any) circumstances your dog can be removed from your home by the organization.
• Research multiple organizations and talk to parents who have DAD’s from multiple organizations. Ask about positive and negative experiences. Find out about their expectations and determine if they match yours.
• Consider what you want in a DAD. Do you want to self-train, starting with a puppy? Do you want an older dog? Do you want the public access training to be done for you or are you prepared to do this training yourself?
• Make sure you know the process if something doesn’t go right. What happens if your dog isn’t alerting? What happens if your dog is found to have a health problem? What type of guarantee do you have against illness or injury?
• Not long ago a Service Dog was placed with a candidate after all the required training was complete. The dog was under 2 years old and had no prior health problems. The dog died within three days of placement and was later found to have an aggressive cancer than had been undetected. This is an extreme example, but these things happen. What protections does the organization offer you in such a circumstance?
• Look up the Service Dog laws in your state. Make sure you know whether you are receiving a Service Dog, or a Service Dog in Training, and how this distinction might affect your ability to take your dog on outings.

What can you expect from a Diabetes Alert Dog?

First, a dog, even a well trained service dog, is still a dog. Any dog comes with a lot of responsibilities, including:

• They poop, sometimes big stinky ones or runny yucky ones and someone has to pick these up daily.
• They need regular grooming including baths (much more often than a pet dog), ear cleaning, coat brushing, teeth brushing, and nail clipping.
• They need food - and if you want your service dog to live a long, healthy, active life, a better than average (and more expensive than average) food is in order.
• They need regular check-ups at the Vet.
• They fart, burp, and vomit when they’re sick.
• They need constant training! Even a fully trained service dog will need to be continually trained and exercised. Skills will diminish if they aren’t continually reinforced through training.
• They need love and affection. Dogs aren’t robots, so if you aren’t a dog person, a service dog probably isn’t the solution in your home.

• And if you decide to self-train a puppy, they have smelly accidents on your white carpet and antique furniture, they chew your shoes and your windowsills, they whine when they have to pee at 2am, anything not nailed to the floor (or, really, the ceiling) is a chew toy, they misbehave - even when they’ve been training perfectly for months, they poop in the middle of the grocery store or in line at the bank, and they take a LOT of consistent effort to train into the well behaved service dog you will be proud to take with you anywhere you go.

All that aside, a diabetes alert dog can be a wonderful addition to your family. A well trained dog can alert you to impending high and low blood sugars, can wake you during the night when there’s a problem, and can be a constant furry friend who will love your child unconditionally.

A little extra time spent on research and consideration now can help to ensure your future with your DAD is all you hoped it would be, and more.

A pox on the box!!!

Sometimes I think about how much of my life intertwines with diabetes. Diabetes does not run our lives, not at all, but it does influence a lot of our decisions because we're always juggling various combinations of foods, activity, stress, hormones, sleep, etc., and trying to anticipate how everything will affect Sarah's blood sugar, in an effort to keep her in the "sweet spot" as much as possible. For such a busy lifestyle, we actually do pretty well at this most of the time.

And even when there's no next meal or next activity immediately on the horizon, I am very closely in tune with the diabetes social network. What I've been wondering lately is... Why? I mean, I love my fellow diabetes moms. You guys have kept me sane through a challenging couple of years, and I think I, in turn, have helped others stay sane. But there's SO much information about diabetes coming at me all the time. Meme's and quips and articles and stories. It never ends.

And so I ask again... Why? I haven't seen any truth about T1 in ages that surprises me. So it makes me wonder, are we playing to the wrong audience???

I had a seriously eye opening experience this morning, I volunteered to work at a JDRF booth at a local country music festival.

In this environment, I was well outside the box. In fact, there was no box. There was Sarah and I... And the real world. And in the real world, NO ONE (okay, in this case no one is 95% of everyone) has a CLUE what type 1 diabetes is. We were in a pretty good spot, a shady area near a firetruck spraying water on the hot crowd, so we had lots of visitors. I started each conversation with some variation of "Hi! We're the JDRF, we're about fundraising for a cure for type 1 diabetes and providing resources to families affected by type 1 diabetes".
I have to admit, the responses floored me. I mean, I KNEW there was misinformation and misconceptions out there, but whoa... I got everything from:

"My grandma died of that. She took pills for years" to

"My husband has that. He used to have stage 2 diabetes but now it's worse and he has stage 1",

to the condescending "it's all about diet. Eat right and you'll be fine!", to my favorite...

"If people would just stop eating crap," to which I replied "actually, type 1 isn't related to diet, type 1 is an autoimmune disease", to which he replied "I know that. But people get it because of all the crap their parents ate before they were born".

At which point I considered strangulation as a means of communicating my true feelings... But decided JDRF might not see that as a public relations win.

Ultimately what I learned is that in our circle of family and friends, T1 makes sense. We know what it is, we know how to treat it, and we know what it isn't - but most of the rest of the world is completely clueless!

My challenge, and my challenge for all of you, is to find a way to find more opportunities to advocate outside the box. How can we MAKE people stop and listen long enough to at least understand the very basics? I don't want Sarah to have to spend her whole life dealing with people who are completely stuck in the "she did it to herself" mentality!

Can this be our next big push? Let's stop preaching to the choir and take the message to the world.

Thank you.



- Posted using BlogPress from my iPhone

Applause for Paws

On June 28 we held our big fundraiser for Sarah's diabetes alert service dog. It's probably going to take me some time to process and write everything down, so for now I'm just going to keep track of the videos here.

If Only, followed by a speech from our MC (Anzio Williams) and Crystal from Canine Hope for Diabetics

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Extreme Gratitude to Guide Dogs for the Blind

Today was a really good day. And now that I think on it, we've had an awful lot of good days over the last few months. In fact, Sarah expressed recently that she really doesn't care if she gets a cure for diabetes or not, because diabetes has brought her amazing, wonderful experiences she'd never have had if she hadn't been diagnosed. That's not to say that we won't keep working toward a cure, it's so important that we stop this disease. But what that tells me is that I need to send out some intense "THANK YOU"'s.

It's easy to get down about diabetes. It's really not fun poking yourself to bleeding 10 or more times every day. It's just not. And high blood sugar tummy aches are miserable. And low blood sugar makes you feel, as Sarah described, "like the whole world just went BOOOOOOOM!". But Sarah hasn't let diabetes get her down. Because of diabetes she's...

• Taken a trip to Washington DC to speak with legislators (and stayed on a very high floor with a super cool glass elevator)
• Gone to diabetes camp where she met some great friends that she now sees outside of camp.
• Sang in front of a whole heck of a lot of people at the opening of the 2010 American Diabetes Association walk in Sacramento.
• Had the intense pleasure to mentor newer kids diagnosed with type 1 diabetes.
• Become a local American Diabetes Association youth ambassador
• Learned that she can get a special dog to love and cuddle AND most importantly keep her safe.

But the best thing that's come from diabetes by far is the amazing group of people we have met through our local Guide Dogs for the Blind group. These wonderful people come from varied backgrounds with a few things in common; a love of dogs, ginormous hearts, and a desire to help people. Wow. That doesn't really even begin to describe it.

Let's start at the beginning. Back in December it was suggested to me that a good way to get Sarah ready for her diabetes alert service dog would be to connect with Guide Dogs for the Blind puppy raisers. So we called our local group. I explained that Sarah wasn't really interested in becoming a puppy raiser (well, truthfully, she'd LOVE to but that's not something we can take on right now), but that she has diabetes and was hoping to get involved and learn about handling service dogs.

The immediate reaction was "absolutely!" "Come on over" "We'd love to have you!". So we drove to Arden Fair Mall for the very next puppy training. We shyly approached the group (neither of us are particularly great at meeting new people) and they pretty much just dragged us in, and about three seconds after they made introductions, Sarah and I were both handed a leash. The leash was attached to an actual dog (see if I'd been them, I'd have probably handed me one of these to start out with).

But no, they had faith that we wouldn't ruin the dogs with our total cluelessness. They walked beside us and guided us.

Since that day I don't think Sarah's missed a Guide Dog meeting. She quickly went through the process to become an official puppy sitter and now has the chance to borrow dogs on the weekends to get even more handling practice.

This weekend was the annual camping trip, and Sarah and I went for the day. As usual, they pulled us in, offered us food (there's always food - thanks mostly to Barbara), and generally made us feel like a part of their family. We played Uno, Barbara taught Sarah to play Sequence, and we all played some game I've never heard of with hurling colored balls on strings onto a PVC pipe thingy. Turns out Sarah was pretty good at the ball hurly game! As often happens with guide dogs, people love to stop and talk about the dogs and what they do. When you're camping, this can end up even more interesting when you're stopped by a large campsite full of line dancers. Yep. They invited the dogs (and let the people come too) to do some line and square dancing.

Sarah had a marvelous time.

I really don't know how to express how grateful I am to these amazing people and dogs except to say that we've met some of the most quality people I've ever met in my life over the last 4 months. They have shown us kindness and understanding. They've learned a lot about type 1 diabetes (whether they really wanted to or not) and accepted from the beginning that Sarah needs an alert dog to keep her safe. They've supported Sarah's efforts to fundraise for her dog with complete enthusiasm. They've spent hours helping Sarah improve her handling skills, always with a smile, always with patience.

This is a group of people who, together, have probably raised a hundred dogs, many of whom have gone on to be working dogs for the blind all over the United States and Canada. They've given their heart and soul for these beautiful animals, always knowing they must give them up in only a few short months. They take pictures and tell stories of doggie antics from years ago and yesterday. They remember the personality and quirks of each dog with fondness and make each dog feel special in its own time with them.

I never knew how much love, training, love, and love goes into making a successful guide dog. I know now, and Sarah and I have both grown so much from this experience.

So thank you to Elk Grove Puppies with a Vision. You guys just totally and completely rock and I can't possible put into words how grateful we are to have met you and become a part of your group.

THANK YOU!!!!!!!! We absolutely love all of you.

Michelle



In order to improve our ability to help keep Sarah safe, she will soon be getting a diabetes alert dog. If you are interested in helping Sarah with this, please visit her facebook page at https://www.facebook.com/ADiabetesServiceDogForSarah or her website at www.pawsforsarah.com

In my house...

• In my house, being “high” has everything to do with the pasta we ate with dinner, and nothing to do with drugs. 

• In my house, being "low" isn't just a state of mind, it's an emergency.

• In my house, a forensics team would find blood residue in ten thousand places. 

• In my house we avoid politics, but if you mention a raw food diet cure, you get a (polite) whooping.

• In my house, drinking apple juice at 3am while sleeping is normal. 

• In my house, the dog is more likely to poop test strips than anything else.

• In my house, crackers in bed are not only allowed, they're encouraged.

• In my house “what’s your number” doesn't refer to a cell phone. 

• In my house, blood is seen as an opportunity - and no one is squeamish (anymore).

• In my house, you DARN WELL better finish that junk food on your plate!

• In my house, if you act drunk, we stuff you full of apple juice instead of coffee. 

• In my house, brushing your teeth after you eat is optional (when it's 3am).

• In my house, teaching responsibility is literally a matter of life and death. 

Can you imagine what it's like, in my house?

In order to improve our ability to help keep Sarah safe, she will soon be getting a diabetes alert dog. If you are interested in helping Sarah with this, please visit her facebook page at https://www.facebook.com/ADiabetesServiceDogForSarah or her website at www.pawsforsarah.com

Sharps

The corner of my kitchen

Disney with Diabetes

Our four day post Christmas trip to Disneyland has come to an end and I thought I'd jot down some of my thoughts and lessons learned...

1. The week after Christmas is an excellent time to go to Disneyland... If you've ever felt the need to experience being in a cattle stampede.

2. There are no carb counts at Disneyland so be prepared to SWAG for all you're worth. (we did get a peek at the carbs per serving of the corndogs, and they are 26g)

3. If you have a tendency to fart loudly and embarrass your family, it's okay, the constant noise and crowds will cover for you.

4. The lines can be excruciatingly long. If you're traveling with a child with diabetes, stop at guest services and ask for an alternative entrance pass, this will allow you to skip most of the lines. Be prepared to explain why you need it.

5. Bring extra everything. You can leave a bag of medical supplies in the first aid center.

6. Pirates of the Caribbean is 14 minutes long... Test blood sugar first and avoid dealing with a low in the dark, on a boat, with fog and noise and drunk pirates all around.

7. Most of the food at Disneyland is way more carbs than you think. Exceptions... Bengal BBQ is a great place for some yummy meat skewers. I estimated 5g each. We actually did surprisingly well with the corndogs at 26g each. If you go to CA Adventure and get soup at Boudin Bakery, you can get the soup and bread separately.

8. Wear comfortable shoes.

9. Wear comfortable shoes.

10. Wear comfortable shoes.

11. If you or your child is a water snob, bring your own because Anaheim water tastes nasty. You'll be doing a lot of walking so keep hydrated!

12. Disneyland will let you bring your own food in, so bring a backpack full of snacks.

13. If you leave the park at 9pm and hear and feel your tire blow as you exit the parking lot, look up before you panic because it's probably fireworks.

14. If you decide to duck into the first aid office to do a blood sugar check, be prepared for them to make you take a room instead of just allowing you to take three seconds to do it in the light. Try not to be annoyed seeing as you've already done bg checks in the restaurants, on the benches, in the lines, on the rides, waiting for the parade...

15. It's the happiest place on earth, so have fun!!!


- Posted using BlogPress from my iPhone

Location:Anaheim, CA

In order to improve our ability to help keep Sarah safe, she will soon be getting a diabetes alert dog. If you are interested in helping Sarah with this, please visit her facebook page at https://www.facebook.com/ADiabetesServiceDogForSarah or her website at www.pawsforsarah.com