It’s Happening

C’s application was approved.  He will be receiving a Diabetic Alert Dog!!

This is such exciting news.  We’ve struggled for a while now with him having trouble feeling lows and not feeling a hint of a symptom of highs.  He craves freedom and I want him to have it more than anything.  He’s 12 years old.  Yet, sleepovers scare me to death.  The idea of him forgetting to test and not feeling a low; not feeling the high that comes from a site accidentally pulling out; the thought of him not having help while he’s out or a friend not knowing how to respond when it comes down to it.  These thoughts get to me and it’s hard to move past them.

We’d considered a Continuous Glucose Monitor (CGM).  C’s insurance does not cover it so we weren’t in a big rush, but have definitely discussed it many times.   C knows that I wanted it.  and I know that he doesn’t.  He does not like the idea of another site.  He hates the idea of carrying another item.  He’s already silenced all of the alarms on his pump so that they don’t go off in class and embarrass him…  But a dog?  He would definitely not resent a dog.  He loves the idea of a dog.  I love the idea of using a natural resource and tapping into its abilities.

This is the route for us and I cannot wait to start the journey.  Oh, that’s right… it’s going to be quite the journey.  The organization, Guardian Angel Diabetic Alert Dogs, is doing a sort of co-training with us.  Instead of us waiting 1 1/2 to 2 years for a fully trained dog, we will be receiving a brand spanking new baby puppy in January.  But not just any puppy, one who has been diabetic scent imprinted, meaning exposed to the scent we want it looking for since birth when nursing.  This puppy is bred to be a working dog and is being taught the scent we want to know about.

Still, we won’t be alone.  When we get the puppy (who’s due to be born in about 5 more weeks) we will get a full weekend of teaching us how to train.  We will enroll in a standard puppy training class, we will do scent work.  After 2-4 months, puppy will go back to the trainers for a month.  They will do more intense training including lots of public access work (remember, this dog will go everywhere!).  Then, it comes back to us for another 2-4 months with new instructions on what we need to focus on.  This cycle will repeat until the dog is 1 1/2 to 2 years old and fully trained.  We will be getting our hands held through the entire process yet by having the puppy live with us from the start, it will get precious bonding time with C AND will have the advantage of having real-time training by living with a diabetic.  Not just scent samples, but real-time highs and lows.

I started a facebook page to give updates on our process.  I’d love it if you’d LIKE it and pass the word!

www.facebook.com/camdensguardianangel

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D.A.D.

I took a big step today.  A really exciting step.  I sent in C’s application for a Diabetic Alert Dog (D.A.D.).  Please help us say a prayer, think good thoughts, whatever you do to help him get approved and start moving forward on the process.

The Scary Part of Independence

The other day I posted about how great it is being able to leave C alone and how wonderful he is at taking care of himself… Well, today I had a bit of reality thrown at me.  Although, I typically don’t blame diabetes or get angry with diabetes (anymore!), I definitely felt the unfairness of it today.

Last night, E and I went to the Dodgers game (they lost) and C stayed at his friend’s house until we got home at midnight.  This morning I decided to let him sleep when I went to work due to that.  I tested him and gave a correction bolus.  Woke him slightly to tell him I was leaving and that was that.

About an hour later I texted him asking if he was awake yet.  No answer, still sleeping?  I called about 15 minutes later, no answer.  I texted again with no answer.  I tried to call my roommate but got a text back that she was at work.  I called him probably a total of 20 times over the next 15 minutes.  I called the house phone (which we never answer because we only use it to call 911 and don’t give out the number) and of course, he didn’t answer.

I jumped in my car and headed home.  The entire way trying to mentally prepare for what could be the worst.  Picturing my son unconscious, maybe seizing, maybe dead.  Wondering if he had already been dropping this morning when I gave the correction dose and I’d pushed him too far.  Thinking about the people who have expressed that they don’t think I should let C stay home alone because of D and how I’m going to want to punch them for judging me if something happens to him.  Thinking of his Dr. and how she probably wouldn’t approve of ‘her’ kids being left home alone and how diabetes is the one to blame in all of this.  I’d never ever have these awful thoughts in my head if it hadn’t shown up in our lives.  But it did.  I haven’t felt that angry in a long time.  Granted, I have a lot of other SHIT going on in my life which probably helped me reach that level of being upset, but I just truly fell back into my old(er) thoughts of just feeling that C and I were cheated.

Of course he was fine.  Of course he was sitting on the couch playing video games and eating popcorn.  Of course he left his phone, on vibrate, in his bedroom and totally forgot to call me when he tested.  Ya, he heard the house phone ringing off the hook and thought it was weird but it never occurred to him that someone would be calling HIM on that phone.

I went over the rules with him again and added a new one that if the house phone rings twice in a row or even more he needs to start answering it.  I have been really pushing myself to think of C, not a kid with diabetes, in all situations.  If he hadn’t been diagnosed with this would I leave him home alone at 12 years old?  Yes, without a doubt.  So, scary or not, that’s what I’m going to do.

My Baby’s Growing Up!! Woohoo!

For the last two weeks, C’s been staying home alone while I go to work.  Believe me, this has been pretty scary for me, but it’s working.  Not only that, but it’s working better than him coming in to work with me.

When he’s at work, he sits.  All. Day. Long. in my office on a computer or reading.  And he’s snacking out of boredom. All. Day. Long.  His blood sugars are letting me know loud and clear that he should have more activity in his life.  His mood is telling me that he needs more stimulation than my small office (and Netflix) can offer.

I have alarms set, every two hours, on his phone to remind him to test and call me.  He’s been great.  He has strict orders to eat real-live meals and not snack on junk food all day.

Today I realized how independent he is and how proud I am of him.  I signed him up for a class at the community college for kids going into 7th and 8th grade.  It’s only for 4 day, 3 hours a day.  He started today.  I walked up to the teacher and said, “Hi,  I just wanted to let you know that my son, C, has type 1 diabetes.  You’ll notice him testing his blood sugar in class.  He also has water to drink and candy he may need to eat, would you like him to move somewhere else, away from the computer if he needs to eat or drink?”  He said, “That’ll be fine, did he bring me some candy, too?”  we laughed and I left.  I realized how much easier it was this year than the other times I’ve left him somewhere new.  The difference is the confidence I have in him.

RIP Pump #1

On Friday afternoon I got a phone call from C letting me know that while swimming (with his summer day-camp), he noticed his pump’s screen was filled with water and he couldn’t get it to turn on.

Yes, that’s a small lake of water in the bottom of the screen

*Yes, the Ping is waterproof.  Yes, I’ve let him swim even with the new one already.  No I don’t think it’s a problem.  C’s Ping has been in the ocean, many swimming pools, jacuzzis (oops! taken off quickly), and water slides and lazy rivers at the water park.  I completely trust its waterproofness.  I later discovered that there was a small tear in the rubber covering the buttons that allowed the water in. 

I called Animas and a new pump was scheduled to be delivered the next morning.  It would end up being about 18 hours later.  I tried to get a hold of his Dr. and another Dr. that he’s seen to double check the amount of Lantus I should give.  I didn’t hear back from anyone for about 3 more hours.  Only 15 hours left until he should be back on a pump.  As soon as the pump should have arrived, we were to be jumping in the car and heading to Dodgers Stadium for the game.  I did not want to deal with overlapping the Lantus and the pump’s basal.  I didn’t want to deal with trying to figure out when the Lantus quit working and the pump started.  I would’ve been happy to under normal circumstance, but not while we’re out trying to watch baseball and eat stadium food in under the blazing hot sun.  I wanted “easy.”

This may or may not be for everyone, so please don’t take advice from me…  I decided to forgo the Lantus and just give corrections every 3 hours. (Yes, I checked with his Dr. to make sure they thought it would be ok FOR US)  It ended up going really well and his numbers were suprisingly “in range” (I’m calling under 200 “in range” when we’re talking about no basal).

At bedtime his number was 117 and he wanted something to eat.  It would’ve only been about 3/4 unit of insulin to cover it and he didn’t need a correction.  I was torn as to whether or not he should give another shot.  I decided against it being that we’d be correcting soon enough.

When I walked in his room carrying a meter, alcohol, a syringe and a vial of insulin I felt fine.  I moved his blanket to find his hand and immediately it hit me.  My son looking so perfect was falling apart on the inside.  I knew his body was being ravaged from that stupid GoGurt he ate.  I realized how the pump masks the issue so well.  Sure there are highs and lows but they always seem so easily treatable.  Knowing there was no pump and no basal, the reality of what would happen if my son didn’t have insulin hit me very hard.  My stomach was so tight waiting to see his number 347 pop up and the 0.7 right after on the ketone meter.

I had to try to wake him from a deep sleep, get him down from his bunk bed and into my room so he’d wake up enough to give himself an injection (he did not want to grant me permission to do it in his sleep).  Two hours later he was in the low 200s with no ketones and had to get up to give another shot.  He was hovering around 100 when we woke up and 97 three hours later when we were getting ready to leave for the stadium.  It’s really interesting seeing how the body reacts when it’s in shock like that.  His numbers were actually super manageable.  Not what I’d expected.

p.s. whole other story but…. UPS didn’t get his pump delivered in time for us to have to leave.  Luckily I text messaged the rep in Los Angeles who we’ve gotten to know pretty well.  He met us 15 minutes away from Dodgers Stadium to hand us a loaner pump.  What a blessing!

Dear School,

So here’s my day so far and the email sent to the school (and district) today.  Blahhhhh

Hi [School Psychologist] and [School Nurse],

I’m just checking in to see if you were able to come up with any ideas at the meeting this morning about C’s education. I’m also wondering if independent studies of some sort were an option or idea. I’m quite aware of how behind he is and am getting increasingly frustrated, as is he, by not knowing how to help.

I just picked him up from school today due to a high blood sugar and his infusion site (where his insulin pump attaches under his skin) was pulled out. This is not uncommon or very noticeable until a high blood sugar. His clothes will continue to hold the tubing in place making it not that obvious of a problem. However, when I came to change the infusion site, [Health Tech] made it quite clear that she felt that C was lying about the problem and that he’d pulled the site on his own to come home. His story made perfect sense to me as to why he was in the office, how he noticed the problem and everything else he said. [Health Tech], not knowing how the pump operates didn’t think this made any sense. She seemed sure that the pump would’ve known that it had become detached and alarmed to alert him. It would certainly be helpful if it worked that way, but the pump does not know. When C realized that it had become detached he ‘suspended’ the pump, meaning he stopped it from continuing to release insulin, which is exactly what he should’ve done. It would’ve continued leaking insulin until it ran out. When you stop it, it does alarm. Every few minutes it alarms to remind you that it’s no longer delivering insulin, a safety feature. [Health Tech] seemed to assume that when it started alarming is when it was disconnected from his body and that that’s when he pulled it off himself.

I left, taking C with me, feeling very frustrated with the attitude I was feeling from her. C told me that when he showed her that it was detached he grinned (probably because he had just realized the problem??) and she asked why he was smiling and told him it made her think he’d done it on purpose to go home. Type 1 diabetes is a complicated disease.  C is a child doing his best to figure it out on his own while at school. When he has a very high blood sugar my first steps are to check the pump and make sure he’d given insulin for all food eaten and then check the site where it’s connected to make sure it’s still attached. [Health Tech] seemed to be acting like this was totally abnormal and could only happen on purpose.

C is a child who does not need guilt piled on top of everything else. If somebody suspects foul play, I would appreciate a phone call outside of my son’s earshot to talk to me, an adult, about it. I am quite upset by the attitude I received while in the office and can only imagine how a child, already feeling less powerful than an adult, would feel with it directed at them.

This is just another piece of the puzzle that’s leaving me lost as to how to help him succeed at school. C needs another learning option, this one is clearly not working on any levels with him.

Emily B

cc [ ****** Unified School District Health Services Coordinator]

Helping the Emotional Side

I’ve been mentioning lately what’s been going on with C.  He’s felt pretty normal and accepting of his diabetes and most aspects of celiac disease from the get-go.

When he started basketball, I wanted to lower his basal while he played.  But C wanted to step outside to pull his pump out and make the changes.  And he wanted to test in the car before we went in and back in the car after the game.  It was the first time I’d seen him attempt to hide his diabetes.

I saw him clearly uncomfortable at the basketball party that I’ve already been writing about too much lately.  He sat with US to eat instead of at the “team table.”

He’s mentioned “just eating gluten” a couple of times lately after a pretty big break of not mentioning it.

He’s falling behind in school.  He gets sent home for a high blood sugar (I’m talking 4-500s when he comes home and I believe its’ stress-induced).  He misses class assignments and lessons.  Teachers don’t send work home.  He goes back lost, gets stressed, high blood sugars follow and I get a call to pick him up.  Vicious circle much?  He thinks he’s stupid.

Two of his best friends who lived on our block have both moved away in the last two months.  One to another city.

He’s been getting more and more short-tempered and not wanting to do anything fun.  Video games are about all he’s been interested in.

I finally put him in counseling this week.  It’s been at the top of my to-do list since he was diagnosed with diabetes and felt even more urgent after adding celiac.  He had crummy insurance for a while which wasn’t covering it and I couldnt’ afford it even though I didnt’ feel we could afford to not do it.  His insurance was switched but then LIFE got in the way and I just wasn’t giving it the priority I knew it deserved.  The other day he came home in a bummer mood again, we ended up in an argument of homework of all stupid things and I knew I needed to do something.  I started making calls to insurance and counselors that day.

I expected serious backlash.  I’ve mentioned it before and gotten it.  This time I explained to him that he hasn’t seemed happy with anything.  School seems to be making things worse and that he deserved a great, happy life.  I told him he’d been handed a lot of difficulties that would be hard for anyone of any age to deal with and that to expect it to be easy would be silly.  I told him that no matter how much I love him, a lot of our attempts at talking about school or attitudes or whatever else turn into arguments or door slamming.  I told him he needed to have someone safe in his life.  Someone he could always talk to and never worry about it turning into an argument.  I told him he had an appointment with a counselor and that we were definitely giving it a try.  I said it was my job to make sure he had the happiest life possible and this is my next attempt to make sure of that.

He said, “I don’t really want to, but I’ll try it.”

We went that night.  I went in with him to explain that he had been diagnosed with diabetes, celiac and ADHD (with no hyperactivity, but inattentiveness…another  thing nobody ‘gets’ they all think he should be bouncing off the walls if he’s got it) all in one year.  When he asked C questions, he responded.  He had a smile a few times when we were there.  It seemed hopeful.  I’m just so happy that he seemed so responsive.  It means that this is going to be a positive help that much sooner.