Thursday, January 9, 2014

And I Thought My Life Was Boring...

Hey, remember that one time when I wrote a blog post about how my life was so uneventful that I had nothing to blog about?  And remember how in that same post I went on to tell you that because of the uneventful nature of the 5 previous months, we had gone out and purchased an English Golden Retriever puppy?  I have read and re-read that post so many times over the past few weeks, and I still can't get over the irony of it. I've always hated the phrase, everything happens for a reason, and for the record, I don't actually believe it.  But sometimes, every once in a while, I think there's an element of truth to those words.

December 12, 2013 is a day that will be etched in my memory for the rest of my life.  In fact, even now, I have a hard time finding words to describe what happened.  Suffice it to say, that my entire life changed that day.  My 2 year old little girl Tessa (or Peanut Baby as I refer to her on this blog) was admitted to the hospital and diagnosed with Type 1 Diabetes.  My husband and I only had an hour or so to grieve before we had to pull our crap together and start learning the nuts and bolts of glucose testing, carb counting, drawing insulin, and giving injections.  Little did we know, that it was just the beginning.  The next 48 hours were jam packed with lesson after lesson about how to care for our new little diabetic.  We listened and took notes and tried our best to get a grip on the situation.  And in between all those things, we cried.  We were heartbroken for our little girl who would never have a "normal" life (they tell you that diabetics can live a normal life, but when you really think about it you realize it's not entirely possible).  But in all honesty, I was maybe even more heartbroken for myself and my "un-eventful" life that had just been thrown into a tailspin.  Hey, at least the level of excitement had picked up a bit.  Just goes to show, be careful what you wish for.
The experience of being in the hospital with my sick child is something I hope I never have to repeat.  Ever.  But I have to say, the doctors and nurses at Primary Children's Hospital are absolutely the best of the best.  And to top it all off, the doctor she ended up being assigned to just so happened to be the pediatrician who cared for me as a child (he has since gone into pediatric endocrinology and is one of the best specialists around).  The first thing he said to me when he walked into our room was, "you probably think your life is over, but I assure you it is not."  Very wise words indeed.  He's a keeper for sure.
giving Rufus a shot - he's a very good patient

the tray of life that sits atop my kitchen counter...in front of the toaster oven

Tessa was diagnosed almost exactly 4 weeks ago.  I'm pretty sure I cried every day for the first 2 weeks.  I cried every other day for about a week after that.  I can honestly say that I'm in a much better state of mind at this point.  I mean, I have my moments, but they are few and they are brief.  I realize that our lives will never be the same, but I also know that good things can come from this challenge we're suddenly faced with.  Actually, good things have come already.  More on that in a minute.  First I want to tell you about the symptoms of Type 1 Diabetes.  Not because I think I'm a smarty-pants, but because I wish I would have known the warning signs before we were sitting in the hospital with our baby being told that her blood sugar was over 500.  It would have saved her several weeks of suffering.  

When she was first diagnosed and I started trying to put the puzzle pieces together, my initial thought was that she had only been showing symptoms for a week or two.  But over time I've realized that she had actually been symptomatic for several months prior to her diagnosis.  Yes.  Months (yikes, I know).

*3 months prior to diagnosis - I noticed strange changes in her personality and behavior (whiny, clingy, tired though not lethargic, fearful of things she had never feared before, she also stopped picking up new words and even seemed to regress in her speaking ability).  At the time I chalked it up to her going through an evil phase or something, but in hindsight I can see that these changes began slowly and became more obvious over the months that followed.  I distinctly remember about a week before Halloween wondering if maybe these were the early symptoms of autism, and thinking that we should probably have her evaluated. 

*2 months prior to diagnosis - strange behaviors continued and she also started crying.  CONSTANTLY.  Not just regular toddler crying.  It was this weird type of crying where I knew something was wrong but I didn't want to take her to the doctor and say, "um, she cries a lot."  Hello.  She's 2!  She also started having suuuuuuuper wet diapers.  Not all the time but frequently enough that I noticed it.  

*1 month prior to diagnosis - all the stuff I mentioned above multiplied by 10.  She was unbearable.  I would go to sleep every night saying to Ryan, "I can't do this again tomorrow.  I just CAN'T do it."  And then???  She stopped sleeping through the night.  Just all of a sudden.  She would wake up crying several times every single night from then on.  I was worried I guess.  But still, nothing really seemed physically wrong.  So I just figured it was part of the "evil phase" she was going through.  She continued to have unusually wet diapers, but I also noticed that she seemed thirsty a lot.  Again, not all the time.  But every few days I was astounded at how much she could drink.  I just figured she was growing.  I also apparently have rocks in my head.

*2 weeks prior to diagnosis - Ryan and I had gone to California over Thanksgiving and left the kids home.  Because we are awesome parents.  The day before we got back my mom called and said that Tess had a weird rash on her torso that looked like giant polka-dots, to which I responded, "yeah, so (again with the awesome parent thing)."  My mom said that she didn't seem sick and didn't have a fever so I really wasn't all that concerned.  I figured it would go away on it's own (and it did eventually).  The morning after we got home, I got Tessa undressed to put her in the tub and I suddenly realized that she had lost a lot of weight since we left on our trip.  I mean, a LOT of weight.  Which was scary for a kid who really didn't have much weight to lose to begin with.  She was also peeing so much that I needed a wheelbarrow to get her diapers to the garbage can.  She was begging for drinks all day long still, and seemed unusually hungry.  I figured that she probably had some freaky virus that was just working it's way out of her system.  But at least she was eating like a bear.  Phew!  Certainly she was on the mend, right?  

*1 week prior to diagnosis - Strangely, for a few days her "symptoms" (I didn't know they were actually symptoms of anything) seemed to lessen.  I really thought she was fine.  Her rash had gone away and she never actually came down with anything else that would have pointed to a virus.  The only thing that stuck out to me was that she seemed very VERY tired.  When she wasn't eating (or crying), she was laying on the floor.  Strange for a 2 year old.

*3 days prior to diagnosis - Symptoms return, only now they seem exponentially worse than they did before.  We decide that if she doesn't seem better by the weekend, we'll take her in.

*day before diagnosis - I asked my little brother who's a 4th year medical student if any of this sounded serious.  We talked about a few possibilities (one of them being Diabetes), but decided that it didn't seem to fit, because really, she didn't necessarily seem sick, and kids with Diabetes are usually sick.  During our conversation he mentioned that when kids develop Diabetes and start to enter a state of Ketoacidosis (aka: what happens right before they slip into a diabetic coma), their breath will smell sweet.  I filed the info away but didn't think much of it.  She had an awful night that night.  She woke up SCREAMING for a drink of water at least 3 times.  I was absolutely stunned when she downed 3 full glasses each time she woke up.  Needless to say, she was peeing as much as she was drinking.  Duh.

*day of diagnosis (we didn't make it to the weekend) - After a long night we both decided that she needed to be checked out by the doctor.  Luckily they had an open appointment at 8:30.  I was still in my pajamas and apparently still in denial, so Ryan took her in without me.  As I was getting her ready to go I noticed something weird.  Her breath smelled like...candy.  I actually felt my heart stop beating for a split second.  I probably should have jumped in the car and gone with her to the doctor, but honestly, I think I was still clinging to the possibility that it wasn't anything serious.  Or maybe I was too scared to hear that it was.  I have tortured myself with guilt over the fact that I didn't go to that appointment with her.  I still can't explain my decision to not go.  But in the end, it might have been a blessing in disguise, because when our pediatrician called 30 minutes later to tell me that my baby had Type 1 Diabetes, I. Lost. It. Completely.  Ryan took her directly to Primary Children's Hospital.  I called my mom in a state of absolute panic knowing that she was the only one who could talk me off this ledge before I had to drive the 30 minutes to the hospital.  She delivered.  I pulled myself together and drove up to meet Ryan and Tessa.  I walked into the exam room and collapsed into Ryan's arms.  We had a good long cry.  We snuggled our sweet little girl knowing that she had no idea that her life was about to change dramatically.  We also knew that she would never remember life prior to her diagnosis.  It was sobering to say the least.  But then, it was time to get down to business.  

So.  Let me consolidate for you.  The symptoms of Type 1 Diabetes are:
-increased thirst
-increased urination 
-tiredness or lethargy
-increased appetite
-unexplained sudden weight loss
-behavior changes
-skin disturbances
-sweet smelling breath

Does this mean that if your kid starts to misbehave he probably has diabetes?  No.  Does it mean that if he seems tired for a few days he probably has diabetes?  No.  Does it mean that if he loses weight he probably has diabetes?  Nope.  Most kids have a very small chance of developing this disease and family history can tell you if your risk is significantly higher (there does seem to be a genetic component).  But even then, the chance is still small.  I'm only listing these symptoms here because I feel that parents should be aware.  Not obsessive.  Just aware.  I wish I had known more about the symptoms of Type 1 Diabetes. 

Okay.  So.  The dog that I didn't want to get last fall.  Turns out I'm insanely grateful that I was talked into it.  Why?  Well, for starters, she's AWESOME.  She chews the baseboards off my walls like nothing you've ever seen, but I can look past that.  In fact, as much as I'm not into the whole everything happens for a reason thing, I have to tell you that she definitely happened for a reason.  We were led to her in a way that I can't describe.  I knew from the moment I saw her that she was meant to be ours.  That feeling has never left me.  From day one, Ryan and I both agreed that there was more to our sudden urge to get a puppy than we could reasonably explain.  And now we know why.

Shortly after Tessa's diagnosis we learned about a fairly new tool that is being used to help people manage Type 1 Diabetes.  It's become especially useful for parents with a young child that's diagnosed with the disease.  This tool is called a Diabetic Alert Dog.  They are certified service dogs that are legally allowed to go ANYWHERE humans can go (planes, schools, grocery stores, restaurants).  They can detect significant changes in a diabetic human's blood glucose level.  They are trained to alert the person when they detect these changes.  That would be HUGE for people with diabetic babies or toddlers. Because not only can they not feel when their blood sugar goes too high or too low, they couldn't tell anyone if if they could feel it.  Tessa has had trouble with highs and lows (most diabetic toddlers do) and it's hard for us to recognize.  Often times we don't catch lows until she's literally seconds from passing out.  It's just really hard to detect fluctuations in little kids.  I spend most of my day in fear of her passing out or seizing while I'm not paying attention.  And night time?  Oh my heavens.  You can probably imagine what's it's like.  We spend every night on edge.  We know that it would only take minutes for her glucose levels to plummet.  That fear is crippling.  We take turns getting up to check her levels all night long.  You can see why a Diabetic Alert Dog is so appealing to us.    

Now, typically these dogs run about $15,000-$20,000, and no, insurance will not pay for one.  Not to mention that for every 10 people who apply to receive one of these amazing dogs, only 1 dog will be placed.  In other words, not gonna happen.  But there were a few things that got us thinking.  Things like the fact that Golden Retrievers are usually the best for the job.  Hey!  We have one of those.  And it's good to begin their training around 6 months.  Wait a minute, our puppy is 6 months!  But there are only a small handful of accredited organizations who can train Diabetic Alert Dogs throughout the country.  Crap!  Strangely, one of those organizations happens to be in Utah.  Holy smokes!  We live in Utah!  You can see where this is going, right?  We sent our beloved Lottie away for the next 2 months to be trained to be a Diabetic Alert Dog.  She left on Tuesday.  Our house feels empty and quiet.  And while my baseboards will most likely enjoy the break, we miss her so much it hurts.  2 months is going to be a long time.  But with any luck, when she gets back, we will have an invaluable tool that will help us keep our daughter safe.  She is going to be amazing.  I knew from the start that there was going to be something big in her future.  She's just...one of those dogs.




As crazy and unpredictable as life can get, sometimes things really do happen for a reason.  I don't know where this blog is going, but I do know that I finally have something worthwhile to blog about now.  Silver linings.