Summertime

We have had a really busy last couple of weeks!

We have a local group of type 1 families that get together now and then.  Sometimes with kids, sometimes just moms (and occasionally dads).  It stemmed from Diabetes Outdoors and sort of took off from there.  We have a facebook group where we can all ask questions, share thoughts, or just be constant support.  Last year, a handful of us went to diabetes camp together.  This year, I think we had 14 families come along!  It’s so awesome to get to build on friendships but even better that we’re also building relationships and friendships for our kids in their own community.  They’re all different ages and genders, but they all get to know each other, have get-togethers and know that their parents are all friends.

This is just the families from our local area at camp! We made up about 40% of the population that weekend!

The following weekend, Bret Michaels was playing at our county fair and we decided to take a bunch of the kids.  Parents worked together to get a hold of his manager and they decided to allow a quick meet and greet before he played.  As we lined up for a picture he said if anyone needed anything, they’ve got lots of supplies.  I responded that the same went the other way, if he needed anything, we’d all have plenty of supplies with us and he said, that’s right, we’ll take care of each other.  Pretty cool.  He signed autographs for a few kids and generally seemed like a good guy.

Kids waiting for Bret Michaels

Camden meeting Bret Michaels

Then, last night we went to a Dodger game.  I’d won tickets in a drawing from JDRF just a few days before and figured it would be great training for Miss Molly!  As we walked into the stadium we were shocked to see a guide dog group was in the same section as us with several of their puppies-in-training!  I talked to a couple of the girls and found out that none of them had been there with the dogs before either.  We were all wondering how these big dogs would fit, but it worked!  We brought a “place” (rug) for Molly to lay on under our seats and she did great.  We had to clear out piles of  peanut shells that were tempting her (I’m pretty sure she found a few strays to snack on) but otherwise she fit just fine.  Although she was in super tight quarters, she was on excellent behavior and twice scooted herself around to reach and grab her bringsel (C was running pretty high for some unknown reason).  Without any commotion or having to get up she grabbed it, we responded by testing C and then gave her a treat and lots of petting.  She was able to keep her excitement totally under control and stay right where she was.  I’ve often wondered how alerts will work in certain situations and this eased all concerns I’ve had.  I did take her up to the deck above our seats to get a drink of water and walk her around a bit and I think most people were surprised to see a big dog walking up the stairs.  She was such a good girl, I don’t think most people had realized she was there!

Miss Molly checking out the game

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

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.

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.

D-Sib Day

Well, Alexis and Sherry have proclaimed today to be Siblings of Diabetes Day.  I figured I’d write about E, but have been so busy it hasn’t gotten done.  I’ve hardly even been on a computer.  Good thing is, it hasn’t been because of diabetes.  I’ve been working, playing with the kids, eating Thanksgiving dinner, going out, you know… living?

Anyways, it’s today and it’s 10:30am right now.  My little E is still snoozing.  In  MY bed.  I cleaned up his mess that he’s scattered all over my living room this morning while he was nice and cozy.  I guess I’ll call that his special treatment today?  Poor kid.  Honestly, we don’t celebrate much around here though.  There’s too much always going on to add in any extra.  We celebrate Christmas, but everything else is pretty minimal.

My sweetie really is, just like most siblings thrown into this life, an amazing supporter of his brother.  He makes it near impossible for C to feel alone.  E loves to test.  Under 100?  You’d better believe he’s going to call it low and demand some candy…  E always checks to be sure foods are gluten-free.  There are a few things in our house that aren’t.  If E has those, he’s always sure to eat on a placemat on the far end of the bar to make sure crumbs are kept under control.  He likes to know how many carbs he’s eating.  Sometimes I realize he also suffers from ‘diabetes-brain’ when he notices things that remind him of a test strip, or a blue circle, or a glucose tab, or mentions what number he thinks a lancet would have to be on if his little cousin had to test

On the trampoline, when suddenly C lays down and can’t get off, E’s extra loud voice is heard screaming for me as he runs inside to get a juice box.  E has a pack on his bike that he keeps a roll of glucose tabs in just in case.

After our pump trainer left last January, E was the first to get excited enough to stick an infusion set on (not inject though) and wear that pump for the next hour or so.  E tells everyone he meets about diabetes and celiac disease.  Like everyone else’s ‘other’ children, he knows all the science, real words and possibly every fact that I know about them both and always surprises people with his knowledge.  It warms and breaks my heart at the same time.  Sometimes, when C wants to go somewhere without me, I feel fine about it as long as E is there.  I know that in an emergency E would know exactly what to do or how to explain the situation to someone who could help.

Because we’re a part of a local group that tries to get together monthly and most of the kids are much younger than C, E actually has a number of good friends living with diabetes as well.  Some have it themselves, some have a sibling with it and some have a parent with it.  It’s all very normal to him.

No, we’re not going to do much celebrating, but E is always told how proud I am of him being so supportive.  C is often reminded how lucky he is to have E on his side and even though it’s not that often that he shows it, I know he’s thankful for him.

Thankful for Our Team

When C was diagnosed with diabetes, the hospital told us we would follow-up with an endocrinologist at UCLA (an hour+ away) and we would go there quarterly.  Later they came in and told us we’d be seeing another doctor instead.  She was in our city but was not an endocrinologist.  She was a regular pediatrician, but specialized in diabetes and ran a pediatric diabetes clinic once a week.

I wasn’t sold.  I’d only known what diabetes was for about 3 days and now they want me to go to a regular doctor instead of the endocrinologist I’ve been reading he should go to?  They assured me it would be fine.  The first time I met her, I knew she was the right choice.  She laughed with me at my panicking and helped me to relax (this was 5 days after leaving the hospital).

Dr. S ‘gets’ me.  She laughs at me when I’m nuts.  She doesn’t take offense at the humor I tend to use or my constant sarcasm.  She understands which things I take very lightly and the things I take very seriously.  She understands that C is 11.  She understands that if I find a stash of candy hiding in the back of our Tupperware cupboard that I should be thankful that sugar is all he feels he needs to hide from me.  In fact, her suggestion was to fill that stash spot with his favorite candy.  Just make sure to leave the carb count in there as well.  She speaks to C directly, understanding that HE is her patient and HE needs to be a part of all decisions.  Although she does not have diabetes, it is in her family.  Her sister has celiac disease.  I have not only her home phone number, but her cell.  She was fine with the fact that it’s taken me over a year to want to wait 3 months in between visits (this will be our first time… so far it’s been 8 weeks and I’m feeling ok).  She’s been fine with the 6-8 week schedule I’ve been comfortable with.  Although, some parents I’ve spoken to feel she’s too controlling, she respects me and will rethink things if I disagree.  She asks C to give her lessons on the Ping since he was her first patient to stray away from her comfortable MiniMed.  She asks us to speak to newly diagnosed parents or parents wanting to start pumping.    She calls C her ‘special patient with a special situation’ to the learning doctors who follow her because he has not only diabetes, but celiac disease and happens to be her only patient with both (by the way, he loves this attention).  She loves how well we’ve adjusted and how much we’ve accepted diabetes into our lives.  Sometimes I wonder if she has any idea how big a part she has to do with that.

Yesterday, we had to go to that original doctor at UCLA (an insurance formality… once a year).  There was nothing personal.  They didn’t share my sense of humor and looked at me like I was weird.  One doctor made a statement, I mentioned that our regular doctor had said the opposite and she said that’s why she recommends ‘not speaking with too many doctors.’  I didn’t like this.  Even though I love ours, I absolutely want to hear other opinions to help form MY OWN.  (At diabetes camp, I made sure I brought all my questions to the doctor there and asked WHY he disagreed with our regular doctor on certain things.  I can’t just put ALL of my faith in one person.)   This appointment felt like an assembly line.  Get in, see first doctor, wait, see nurse, wait, see second doctor, wait, see nurse, wait, see social worker, wait, see nutritionist, make next year’s appointment.  Phew.  Not at all like our normal one.  We see the nurse and doctor who KNOW us.  They ask about my other son BY NAME.  The nutritionist peeks her head in during the appointment to tell me she tried the gluten-free pizza I recommended last time and agreed it was DELISH!  The gastroenterologist walks down the hall and sees us.  On his way to his patient asks how everything’s been going diet-wise.  On our way out we might run into his general pediatrician who recognizes us and asks how both boys have been doing.

It’s clear that your team can make or break you.  Their attitude will shape yours.  There are amazing doctors out there.  My family is truly blessed that we have found not only an amazing endocrinologist (well, general doctor specializing in diabetes…), but gastroenterologist and even pediatrician.  I really don’t want to think of where we’d be without their support.

Car Ribbons

You know those ribbon magnets everyone puts on their car to show their support for some cause or another?  Well, I try not to be one that does something that everyone else does, but I do have a ribbon magnet.  It’s green and it says Celiac Awareness.  I decided to put it on my car because first) I bought a new car that looks like every other car and I needed something to tell it was mine; second) Most people I talk to have never heard of Celiac Disease, so I might as well throw out a little awareness while I’m driving around.
So this morning we’re at a stop light when the car behind me backs up, pulls up next to me and motions for me to roll down my window.  She asked me where I got it and told me she loves it.  I told her ( http://www.glutenfreeforever.info/awareness.html ) and asked if she had Celiac Disease and she said she did.  I said so does my son and motioned to him.  She looks at him and say, “It’s a pain in the butt isn’t it?” and they both laughed.  It was perfect!  It was the first time we’ve met anyone else with it and it was such a cool way to find out.  Light turned green and we seperated, but C kept talking about it.  It was just one of those moments that leaves you in a good mood.  I’ll stop worrying about how “typical” I am with my ribbon magnet now.  🙂