The Verdict?

Well, we've been "podding" for 10 days now.

Do I like it? Yes.

Do I love it?

No.

After being on the Animas Ping for a year, and having our own struggles with that, I wasn't naive enough to assume that switching to OmniPod would be smooth sailing. But I did have a teeny, tiny hope deep down inside that it would rock our world (in a good way, of course!) I didn't expect a bent cannula, blood in the NEXT cannula and a ripped-off pod in the first week alone.

I have come to the following conclusion: All artificial insulin delivery systems suck ass in their own special way.

**groundbreaking, right?**

Sigh. Don't get me wrong. The pod is super neat. I like love the PDM. The bright screen, the intuitive software. It's awesome. I'm working around the lack of IOB just fine (although, he's been so dang high, that has NOT been an issue.)

There are a few things working against us, I suppose. It's been an exciting week (Did ya'll hear that it was CHRISTMAS??!!) He's complained of pain in his legs, which always mean GROWING pains, which means basals probably need to be increased.

I put his Dexcom on him for the first time in months, but it's been giving me the ol' three-question-mark salute every night when I need to see what is going on. We should have a whole new Dex system arriving tomorrow, since our warranty expired on the old one and I suspect our transmitter is just kaput.

Do you guys ever just feel like saying F&%$ it, and go back to shots? Because man, MDI seems so much easier at the moment. There are fewer variables. You KNOW the insulin is getting in. There's no bent cannula/blood in cannula/ripped site or pod crap.

So the verdict is in. Pumps are a wonderful tool in delivering insulin, but they are all far from perfect.  Adam, on the other hand, enjoys being free of the tubing so much, that we are going to keep "podding" along until we get it all figured out.

2012, please be kind.

Last Year...

Last year at this time, we were waiting to start pumping with the Animas Ping. Our pump start date was January 7th...who knew that exactly a year later, we'd be switching to OmniPod? I guess it just goes to show you that you just never know what life has in store for you...I'm trying...slowly, but surely...to accept that I simply cannot plan ahead, no matter how hard I try. Going with the flow is something I've had to learn quickly since Adam was diagnosed.

I was reading my blog entries from last December:

I still feel like this is all a dream I am going to wake up from. I read your blogs…I identify, I relate and then I sit back and go whoa…this is me. This is my life. This is HIS life. He has a disease. It is not going away. And I still can’t fucking believe it. I had a great talk with a friend last night and I think I haven't quite reached the acceptance stage yet.

All I want for Christmas is to feel normal again. I want to go back to the person I was 4 months ago. No one likes the person I am now, least of all me. I am changed. Our family is changed. And while in the future, I may see some things as a blessing, I don’t feel as if we are changed for the better and that hurts.

Parenting is the single thing that brings me to my knees on a daily basis. Even before Adam’s diagnosis, you walk around each day as a parent, wondering how you are going to screw them up that day.

Parenting a diabetic child and his sibling is even harder. I know you all understand.

 

Do I feel any different this December? I suppose a little bit. I'm not mourning (as much) what was lost. The fact that my 5 year old will never know life without insulin, will never not bolus before eating...will always carry this burden with him until a cure is found. I pray and hope he doesn't grow up seeing it as a burden, but I know there will be times that he feels it is. 

 

I was reading Wendy's blog post from today, and got a pit in the bottom of my stomach at the thought of sending Adam off to a playdate, 20 minutes away....with someone who knows nothing about diabetes care. And she did it! She trusted Sugar, and wow....my hope is that I can do that someday too. :) 

 

Some things are different for the better this year. I have a full year of d-care under my belt. I've become a master at guessing carb counts. I know how to navigate Adam's pumps and I can do a site change in no time flat (which will be even faster with OmniPod!)  But I still stress that I don't know enough. When to change his I:C ratios...basal rates. I've learned to ask for help. I email his endo when I'm lost...we try, try, and try again until we see some semblance of "normal" numbers. 

 

I still bristle when people ask if his diabetes is "under control."  I get tired of explaining over and over and over again that YES he can have candy, we just have to cover the carbs with insulin. That NO he did NOT "get" diabetes from eating poorly, that it's an auto-immune disease that was in no way his fault.

 

I'll make a little d-mom confession here...one of the reasons I'm excited about the OmniPod is for the same reason Adam is excited: no one will know. And if no one will know? Then I won't have to explain over and over and over again...

 

And to close out this random, highly scattered post...I just want to send a shout out to all the d-mamas out there. I have learned MORE from you all than all the doctors we've ever seen. When we need supplies? This community is there to share what they have when others need them. I'm continually amazed at the wonderful generosity and spirit that we all share. ((hugs))

And the glassybaby goes to...

Ha! You thought I'd say it right away? Tee hee...

I should have posted this earlier, but Adam has been sick with a nasty cold and we've been enjoying some nice daytime naps. Haven't gotten anything done the last few days, but snuggling with my boy and the kitty has made for some cozy afternoons. And I've watched more Big Time Rush episodes than I care to admit...let's just not talk about that, mmmkay?

So, I had 9 entries...which made the chances that much better for all of you that entered. :) I printed out the comments, cut them into strips and put them in Adam's hat:

And then....he picked one!:

What...you can't read that? Damn camera - I focused on that cute face with the red, runny nose. Here's what it says:

It's WENDY!! Wendy, Wendy, bo bendy, banana-fana fo fendy...me my mo mendy...WENDY!


Sorry...not sure where that song came from. Must be feeling goofy tonight! 

Wendy, my friend, you are our winner. Yay! Email me at mylifeasapancreas@gmail.com with your address and I will send it to you. Luckily, I don't have to send it far. :)

On that note, we have been busy Clark Griswold-ing our house for the holidays. One of the perks of having an 8 year old is that I didn't have to decorate one of our trees - she did it all by herself!

We also have another "helper" this year:

Yeah, she's not much of a help. She's pretty much un-decorated the bottom of each tree. She's too cute to be mad at, though!


And for kicks...I have to share this ornament that Adam made last year. I LOVE it and he HATES it. I keep finding it upside down behind the tree. Then I promptly put it back up, front and center.

It makes me chuckle!

In other news...our OmniPod has arrived! We've got pods, a PDM and a nervous mommy. We aren't training until the 16th (my choice) so that we can get used to it over Christmas break before I have to re-teach his nurses what to do.
That's the news from here...time to put my little rugrats to bed. Tomorrow is FRIDAY...yay!

A Giveaway!

I have a little giveaway for my wonderful DOC peeps.

It's not a pump pack or a medic alert bracelet or juice boxes. What is it, you ask?

It's a lovely little something just for you: 

It is a "Hope" glassybaby.

Here is the description from glassybaby's website:

hope

I live in hospitals and crowded school rooms. I'm there when planes and teenagers are late coming home. I am the future and people give me to those they care about. Some of those people refer to me as the light at the end of the tunnel.

I am hope

I am glassybaby

Never heard of glassybaby? I hadn't either, until my sweet momma got me one last year. glassybabies are beautiful, hand-blown glass cups that can be used for a variety of things - a bud vase, votive holder or even as a drinking glass. They are gorgeous, heavy, and cast a beautiful glow when you light a tea light inside them. They are all unique and one-of-a-kind, handmade pieces of glass.

The best part about glassybaby? They are a charity-driven organization. From their website:

"At the heart of glassybaby is our mission of goodwill donating hundreds of thousands of dollars to charities dedicated to health, healing and quality of life, thereby helping to provide a safety net to those in need. So many stories begin and are fostered around these little beacons of hope. Creating memories, gifting and receiving, lighting and sharing, our community is strengthened and supported by glassybaby giving. As a company, we are determined to stay true to our mission, we are grateful to our community for sharing in our journey, remembering that as each of us moves through our own story, it is our own voice we must listen to, it is our light that must shine."

Love that! 

I use my glassybabies for many things: 

On my mantle - oh how I wish the blue glassybaby was called Hope (for diabetes)! This one is called "Fortitude."

Our Thanksgiving table - all of my mom's glassybabies with flowers! Beautiful.

Today, my mom and I are giving a Hope glassybaby to one of you. So you may light it, feel it's calming warmth...and some hope when the night is dark and the numbers are not so great.

So, leave me a comment! Please include your name! The giveaway will run through midnight on Wednesday, December 5th. I'll print out the list of comments and have Adam draw one out of a hat!

**This post is not sponsored by glassybaby - my momma purchased the glassybaby to giveaway to one of you!

Are We Pod People?

Adam has had a rough go of it the last few months. He's always been my happy-go-lucky kid, even after his diabetes diagnosis. Lately, he hasn't been so cheery. He's been sad, mad and angrier than I've ever seen him. Maybe it's being 5 years old. Maybe it's not.

We saw his pediatric ophthalmologist for his bad eye last week and got some bummer news. He has lost some of the vision he has gained in that eye in the last year. Why? Because with the diabetes diagnosis, we let patching slide. There are only so many things in a day that I'm willing to fight my kid on - and diabetes came first. He's been patching since he was 9 months old, and frankly...I didn't have the extra energy to force him to wear a patch that he hated for 2 hours a day.

Well, guess where that got me. He went from 20/40 vision in his contact lens eye to 20/60. His doctor was NOT pleased and has ordered patching for 5-6 hours a day, plus another exploratory vision check under anesthesia scheduled for January.

Now, in addition to having issues with diabetes lately, and being just plain upset about it, he's mad and angry at me for forcing him to wear a patch for all of his waking hours when he gets home from school. He's PISSED.

As in me chasing him around the house, having Jason hold him down while I put a patch on, having him rip it off over and over until he succumbs to his fate.

It's heartbreaking.

He doesn't want to be a kid with diabetes who wears an insulin pump that everyone can see.

He doesn't want to be a kid who has to wear a contact lens and a sticky, annoying eye patch over his eye for 5 hours a day. 

He doesn't want to be different. He just wants to be a kid.

With that said, we are embarking on a new adventure, mostly because he wants it. And nothing else has made him happier since he tried on the Omnipod last week.

We met with the rep last week, who came over and discussed the Pod with me, my husband and my parents. We all asked questions, we all got to test it out. We did an actual insertion on Adam and boy, did he think it was cool. And as an added bonus, he seems to think it doesn't hurt as much as the Insets.

Am I nervous? Hell yes. Have I had second thoughts? Absolutely. I've been awake at night more often than usual worrying about this. About re-training myself. About re-training the nurses at school (I feel totally guilty about switching pumps on them now that they just got the hang of the Ping.) I even got to chat with Hallie on the phone and she answered ALL my questions about switching from the Ping to the Pod. :)

Thankfully, I have the comfort of knowing we still have the Ping and can go back to it if we want to.

But, I am willing to sacrifice a few things for a happier kid. There are so many things about his life that I cannot change. I have to tell him way too often, "I'm sorry...you don't have to like this, but you HAVE to do it."

I'm also hopeful that the fact that it is more user-friendly will allow me to get "out" a bit more. My mom thinks it is so much easier to use, and since she is our only babysitter...well....that rocks.

So, I hope you will all hang with me as we begin this new adventure. We got the go-ahead from his endo yesterday, (after a lecture on how "the grass is not always greener on the other side!") the paperwork is in, and now we just wait for our pods to arrive and schedule training.

Yikes.

Thankfully Overwhelmed

I'm feeling a mixture of emotions tonight - both completely overwhelmed and thankful at the same time. I'd love to feel just CONTENT, but that would be too much to ask for, right?

Stressed about prepping for Thanksgiving at my house, hosting 24 people.
   
     But thankful to have so many friends and family to celebrate with, beautiful weather so we can eat outside, and lots of yummy food.

Had a minor freak-out today when we completely ran out of test strips...even after raiding Adam's lock-down kit at school.

     But completely thankful that his 3 month supply from Medco arrived today, the day before a holiday  weekend.

Stressed that we are choosing to switch insulin pumps.

     But thankful that we are able to CHOOSE and have the ability to switch things up when needed. Did I mention I'm stressed about learning a new system? But I'm excited. And stressed...and excited...and so on.

Overwhelmed that we have a child with diabetes...that we have to make these decisions and it's all on our shoulders.

     But thankful for the invention of insulin, pumps, and that Adam can live a healthy, happy life and we can manage it.

So much to do tomorrow...

     But really thankful that my mom brought over some wine for Thanksgiving dinner a bit early. Sorry mom...I had to break into it. Good thing the stores are open tomorrow....heee!

I'm also terribly thankful for the DOC. Y'all know who you are, and I thank you from the bottom of my heart for helping me through the past year. HUGS...and Happy Thanksgiving!

Leaving his mark

I went up to Adam's room the other night and this is what I saw on his dresser. He'd "tagged" his glucose tabs with his name. I literally laughed out loud - that kid is so funny. Despite diabetes, he still does typical 5 year-old things, like writing his name on everything he can. :)

Ya know what ELSE I hate about diabetes?

As if there isn't enough to hate about it...

But one thing has been bugging me this week. As a caregiver for a diabetic child, I often feel so alone in his care. And I'm not talking about "alone" in the sense that I don't have support from my family and friends. (And the DOC, of course!) I do. It's just that diabetes is the kind of disease where there is no set treatment plan. There's no 1 + 1 = 2. And let's face it. I'm a girl who likes a clear plan.

There are so many variables. While we all have our endocrinologists, and they can give advice on what to do...they don't always have the answers either. They can't say, "Do this and it will fix it." Half the time I feel like I'm the one driving his treatment and it's a scary place to live. I ask for advice when I need it...but often I'm still left here, drifting in the wind, trying whatever comes to mind to try and "fix" what is wrong with his blood sugars.

I try and try and try different things until I'm left with a cardboard boat, patched with duct tape...sinking faster than I can keep it afloat.

I hate having to make major decisions regarding his care alone. People and doctors can give advice, but it comes down to what we, as his parents think is best. Isn't that scary? It really is to me. 

Today, again, he had a bummer day at school. His site pulled, he had a hard time pricking his finger because the Multiclix was stuck, he wanted to get out to recess, but his BG was low. And he cried. He told the school nurse he wished he didn't have diabetes. That made me sad.

I want him to be happy. I want to make this easier for him. I will do whatever it takes to allow him to play like a regular kid and not have to worry about all of this stuff so much. It's my job to let him feel as free as he can, and if it means investigating another pump after only using the Ping for a year, we'll do it. I was completely opposed to it a month ago, but after seeing him break down today, I'm open to it.

This is all so hard. There is this huge neverending-ness to diabetes. Even when you think you have it all figured out, you just don't.

New Pump on its Way!

I still have no idea what is up with Adam's blood sugars...judging by the numbers, his endo thinks something isn't working. Animas says it is. BUT the moment I mentioned that the little plastic cap on the radio button came off (gotta love 5 year olds) she said, "Well, we have to send you a new pump because it's no longer waterproof!"

And really, even though he's only been pumping since January, his pump looks like it's been through WW3. Seriously...the sand alone that gets in that thing. I have no idea how pumps are supposed to last 4 years on small children. Wild ones, like mine, that is!

So, we shall see. One thing that really made some sense was regarding his infusion sites. He uses the 6mm Insets, and honestly...he pulls on his sites A LOT. She said that the tugging is enough to remove that short cannula from it's place without being obvious. We may have to switch to the Contact Detach sets. Who uses those? Are they as easy as the Insets? Do they hurt more?

This also leads toward a discussion we have in our home right now regarding switching pumps. Jason is gung-ho to switch to Omnipod. Especially since the new release will have the IOB feature fixed (so said the rep a few weeks ago - is this true?) I'm not ready to turn our lives upside down again AND train the school AGAIN.

However, it's starting to become a quality of life issue for Adam. He HATES the tubing. Hates it with a passion. He pulls it, twists it and cannot keep his hands off of it (which makes me wonder how often his numbers are bad because he pulled the cannula). He has trouble dressing himself with the tubing, and has gotten the tubing twisted in his..uh, man parts....more than once. Sounds painful to me. :)

We are coming to a crossroads - he is becoming more vocal about what he wants. We showed him the Omnipod and he was ALL for it. In fact, he said, "Wow....I could be like a super-spy diabetic person! No one would know I had diabetes!" So, that kind of stuff is becoming important to him, and I wouldn't be a good mom unless I acknowledged it.

I'm not sure where it will all lead, or when/if we will switch...but it is on our radar for now. So much to think about.

On WDD...help?

So it's World Diabetes Day. We commemorated the day by wearing blue....and going back on MDI (kinda).

Le sigh...maybe someone can help me. I'm at a loss. You all saw Adam's 600 number last week...well, that trend has continued. It is rare that I can get him out of the 300's most of the day. This weekend was the straw that broke the camel's my back.

Both Saturday and Sunday he was in the 300's. Both days I employed the use of temporary basals...on Sunday to the tune of +150% most of the day. Never got below 300, often he was in the 400's and 500's.

He just saw his endo a few weeks ago. At that time, he increased his basals across the board by .025, which was fine. When he started having highs last week, I increased everything again by .025 so that now most of his basals are at .400/hour. For reference, his breakfast I:C ratio is 1:16, and the rest of the day is 1:20 (and I really don't think I need to change them...but who knows.)

So last night, I'm pissed at the pump and I give him an injection before bed - which brought him down in range beautifully and quickly. And I do realize that an injection will generally work quicker than the pump because of better absorption, but it made me wonder if his pump is not working correctly. I've changed his sites both Sunday and Saturday (and I'm about to do it again tonight). No bent cannulas, no blood in the cannula.

This morning, he woke up at 185, I pre-bolused breakfast at 6am, but by 9am, he was 300. I emailed his endo this morning and he did not want to willy-nilly change basals right now, but to keep his pump on for basals today and bolus him via injection. So I did that for lunch, and by golly, he was in range at his next check.

I fully realize that pump failures are rare....but why would injections keep him in range, but his pump doesn't? I'm not sure what to do next. I'm doing injections tonight....changing the pump site, and then going back to the pump tomorrow to see if anything has changed.

Arrgh. My brain hurts. Why does this all have to be so damn hard? I'm incredibly frustrated and I HATE having him be in the 300's for as long as he has been. I'm so confused. We rotate sites...fresh insulin in the pump every 3 days...no ketones at all (thank goodness!)

I'm finding it hard to trust in our pump right now. I am having the urge to go back to MDI because at least I know the insulin is getting in there. 

Diabetes Walk...and other schtuff

Our walk was a week ago? Sheesh. We had a super busy weekend and week, so I'm finally getting around to some posting. And, also? Adam's numbers are completely whackadoodle. I have no clue what is going on. More on that later.

It was a little chilly on our walk day! And it was wonderful. The ground was soggy and Adam had mud all over his body within 5 minutes, but he loved it. We had a small group, but Adam was SO THRILLED that his best buddy from kindergarten came to walk with us. How cool is that? His mom is familiar with Type 1, and has been so supportive and interested in what we do. The fact that she brought her son and little girl out on a cold, wet morning meant so, so much to me. I mean, we all know how rare it is when you tell someone about Type 1 Diabetes and they "get it" right away...but she did.

How cute are they?? Adam loves his friends fiercely, and this little guy loves him right back. Makes a momma swoon.

It was a nice family day. After the walk, we checked out the booths and Adam got a cool new "camo" skin for his meter and pump while I was talking to the Animas guy. See?

Oh...um...yeah, that HIGH GLUCOSE thing...we'll chat about that later....

So, here I am talking to the Animas guy about how Adam MAY or MAY not have a hairline crack in his pump, when my husband comes bounding up behind me with a fistful of Omnipod stuff, yelling, "Hey! HE SAID WE CAN SWITCH FOR ONLY $150!"

Yeah, so at that point I pretty much grabbed the camo skins and ran. :) Insert foot in mouth, much?

The Omnipod discussion is for another blog post, entitled, "The One Where My Husband and I Argue About Pumps."

Anyhoo, we enjoyed some free food, free stuff and fun music. And then enjoyed doing a site change in the back of the SUV on an EXTREMELY cranky boy who was high even after the bounce house (this is called foreshadowing.)

But never fear...his sister had him laughing by lunch time:

Okay, so this post is all over the place, but I'm just going with it.



WHACKADOODLE = Adam's numbers. During and after the walk, he was high. 300's high. Sure, he had a little cold, but what kindergartener who is in a cesspool of germs 8 hours a day doesn't? All weekend, and on Monday, I kept correcting, doing temp basal increases, you name it. Then Tuesday came. At his 9am check, he was 474. Full insulin dose for snack (we usually do half because of recess) and correction. Lunch, he's still at 380-something. Then at 12:30, he's back in the 400's and I pick him up from school after doing another site change and correction.

Then, about an hour after we get home, I get this:

Never have seen that before and it scared the shit out of me. And no ketones! (an aside...you all of your kids automatically get ketones when they are high? Adam never, ever does. Even after days of being high. Is that weird??) He said he had a tummy ache, but that was it. I ripped out that site, put a new one in his tushie with a fresh bottle of insulin AND gave him an injection. Which he totally hated, by the way.

So, finally by dinnertime he's fairly normal.

But, WAIT! Guess what is behind Door #2 at bedtime?

Yes, you d-mama's guessed it...a LOW. A persistent low. Mother-effer.

And now, ever since Tuesday, his numbers have been all wrong. No rhyme or reason. Nothing. High last night, low tonight. Why, why, why? I just don't get it. It's like that wonderful A1c we just got is mocking me.

Yes, Diabetes mocks me.

Thursday

Aaack! I don't really have anything substantial to post...but, I just had to get my toes off the top of my blog. :) They looked fine on my cellphone...but dude, on my computer screen...ugh, just....NO.

I can't believe that Halloween was just on Monday...I have been out in the stores this week and it seems like the holidays are already in full swing. I hit a department store today, and the Christmas trees and decorations were all up! Crazy. I mean, I LOVE Christmas, but I'm just not ready to jump into it yet.

In other news, our JDRF Walk is on Saturday! I'm looking forward to it - it's going to be COLD out! Yes, I am nuts, but us desert dwellers rarely get cold days. We will have a small group this year, but two of Adam's buddies and their moms are walking with us, and I am thrilled for him. It will be a fun morning!

Okay, I think I've written enough to get those darn toes off the top of the page. :) Happy Thursday, everyone!

1st Annual Type 1 Day

In honor of the first annual Type 1 Day and for Diabetes Awareness month (hello, NOVEMBER!), I'm showing you my feet.

I can't even claim any sort of credit for this idea...I shamelessly stole it from the lovely Donna. Once I saw HER toes on Facebook, I knew what I was going to be doing on 11/1/11!

Plus, our JDRF Walk for the Cure is on Saturday!!! So, why not have pretty toes for the event in support of diabetes awareness? I've already gotten quite a few comments today, and it's fun spreading the word about T1D and the need for a cure.

I've already done a lot of educating the last few days - whenever Halloween rolls around, we get tons of questions about whether or not Adam can participate.

The answer is YES! He can eat whatever he wants. Well, whatever *I* will let him eat, as his mom. :) As long as he has the appropriate amount of insulin to cover the carbohydrates he has eaten, he is golden. He had candy last night, and yes...he had a piece of candy this morning before school. Diabetes doesn't stop him from being a kid - the only difference is that he must have the right amount of insulin to match whatever he eats.

Can you imagine having to do that for the rest of your life...carefully tracking every morsel you put into your mouth? That's why we need a CURE. So that Adam doesn't have to be hooked up to a little machine 24 hours a day, 7 days a week just to live life like we do.

2nd D'oween

Last year at this time, I was nervously handling our first Halloween with diabetes. Adam was honeymooning, and if I recall correctly, he went low even with all the candy and activity.

This year? We rocked it. With a pre-trick-or-treating number of 111 (gave a mini pack of Reese's Pieces before we started walking) and a BG of 131 at the end of trick-or-treating - we did damn good! He had some candy before bed and his bedtime number was 188, with a little less than a unit on board, so we were good to go. Such a relief to be on "this side" of diabetes this year and not just starting out. And the pump! So much easier to have that this year.

Adam was a Ninja (couldn't you tell from his POSE??) and Sydney was a vampire girl. Loved that I was able to put some makeup on her for the first time ever. They had so much fun and it was a great night!

Happy Halloween to the DOC!

Sharing my joy

I guess it takes a lot to get me to blog these days! Life has been very full and busy. :)

But I have some wonderful news that I just had to share with the DOC. Adam had his quarterly endo appointment today, and I was STUNNED to hear that Adam's A1C was 6.9.

I know!

That is the lowest he has ever been, and I've had a perma-grin on my face ever since. It's funny how such things can make you so happy. I believe his last A1C was 7.6 or so.

I'm sure that at our next appointment, the number will be up again with the holidays rolling around, but for now, I'm going to bask in the glow of Adam's first A1C under 7.0. :)

We do have two other issues we are looking into (it's always something, isn't it?) The first thing is that Adam has had some wicked B.O. the last few weeks. Is that TMI? I'm sure he'll kill me when he's older. But...from what I understand, 5 year olds should not have that kind of stench. Even active little boys like mine. He doesn't have any other symptoms of precocious puberty, but his endo is doing a bone x-ray anyway just to check it out. I fully expect it to be fine, but I figure since he sees an endo regularly anyway, I thought I should mention it.

The other thing is from his labs - it turns out he has a very low IgA level and could be IgA deficient. Does anyone know anything about this? I read that kids born with low IgA levels are more prone to autoimmune diseases (um, duh...already got that one covered!)

I know that a low IgA level could point to Celiac, but he did test negative, even after looking at the IgG levels. So, at this point there is no Celiac. His endo said that having a low IgA level could just mean that he is going to be more susceptible to illnesses, but luckily (knock on wood) so far he's been healthy. Anyway, just curious if any of your kiddos have tested low for this.

Other than that, things are chugging along around here. Can you believe it is almost NOVEMBER? Yikes.

We are loving our little kitty - she is so much fun! The kids adore her and she's been a nice addition to our family.

A New Family Member!

Nah, not pregnant...but this week, we got the next best thing:

Meet our new kitten, Macy!

She is 2 lbs. of adorable fun - we adopted her from the Humane Society on Thursday, and she has already brought such JOY to our home!

If you know me in real life...you will know that I have long-maintained a "no pet policy" in our home. Don't get me wrong...I love animals! My parents have 2 of the sweetest golden retrievers, and I love them...I just don't want to take care of them. But, as often happens...my kids wore me down. And my husband caved. And really, they deserve to experience growing up with a pet. Since we had cats when I was growing up, I figured that would be the best (read: low maintenance) pet for us.

We spent the last week searching for the perfect kitten for us - we went to the pound, and multiple Humane Society locations until we found Macy - a 7-week old little furball. She is SO much fun - and tolerates the kids handling her and playing with her so well.

Don't tell anyone, but I've never seen my husband so googly-eyed over another living thing...I even think he wasn't this crazy about our kids when they were babies!

So that has been keeping us busy! She has been a great addition to our home, and I am so happy we have her.

High Risk

Uh...er...uh...hello?

I have attempted to blog so many times in the last few weeks, even crafted entries in my head, but never got the mojo to put fingers to keyboard. I think I have needed a little break these last few weeks - settling into school for the kids and getting used to our new routine.

Also? I haven't wanted to think about diabetes all that much lately. I don't want to read about it, I don't want to do any research and...if I'm really going to be honest here, I wasn't even planning on doing our JDRF Walk this year. (But never fear, we are going to walk. It may just be a few of us, and we won't have fancy t-shirts and thousands of dollars raised, but we will be there.) I'll go ahead and admit that I feel like I am not doing enough when it comes to advocacy, but it's just not something I can focus on right now. Sometimes I just want to crawl into my own little world and pretend that diabetes doesn't exist.

But, that is not reality. So, I avoid all the "other stuff" while continuing to do my daily diabetes duties. (Damn, I love alliteration.)

I will admit I cried a bit today. Sometimes it's the silliest little things that get to me. Yesterday it was the fact that I had to pull Adam out of school to see his eye doc, and he was MAD. He was so pissed that he was missing school. And then? An hour later I had to run back because his contact lens was bothering him and I had to take it out.

I just wanted to scream. Why can't this kid just enjoy life and stay in his classroom all day like the other kids? Not only does he have to leave for diabetes, but for his eye as well (we are transitioning to a new contact lens and the fit isn't right....so we are having issues.)

And today, it was two little words - high risk. It was just a passing comment from our health assistant in reference to his care, but when she said, "Well, Adam is the most high risk student we have here, so he is our priority" it made me tear up.  I LOVE the fact that they take such good care of him, but it was really hard for some reason to hear the words "high risk" and "Adam" in the same sentence.

Other than those little things, life has been busy but good. I am happy being home for my kids - baking cooking, doing homework, volunteering at the school. I'm co-chairing our school's Book Fair in a few weeks and I'm feeling fulfilled.

Oh! I almost forgot...I have a giveaway that I need to plan! So that will get me back here in the next week or so. Stay tuned. :)

Listening to the Little Voices.

Courage doesn't always roar. Sometimes courage is the little voice at the end of the day that says I'll try again tomorrow.

— Mary Anne Radmacher

I am totally stealing this quote from Joanne. In fact, her post about "One more thing" gave me the courage to write this post. 

I have been a ball of stress for the last month. 

Okay, let's be honest, I was a mess for a good few months before that

My hair is falling out in clumps and breaking off. 

I can't sleep through the night. 

I'm not taking care of myself. 

My kids are not getting the best of me. 

That One More Thing that put me over the edge? School for me. 
 

I withdrew from my Biology course this morning. I listened to that little voice in my head that said, "This is too much." And you know what? Pushing the "submit" button on the "drop a class" screen felt like a 50 lb. weight had been lifted from my chest.
 

I feel like I jumped the gun. I thought could be a rock star and handle it all. 

I also feel like science may not be for me. Let's face it... I have a degree in English Literature. I am a right-brained girl all the way. I had to work way too hard for the mediocre grades I was getting. Perhaps I didn't give it a chance. But I think that deep-down, I know that this may not be the path I was meant to be on right now.

I need to remember that what may be perceived by some as "quitting" is actually that little bit of courage in the background, allowing myself to say, "this is too much and I just can't do it right now." And honestly, I am okay with that. I am going to make mistakes, fail, try new things, decide they aren't for me. Like I told a good friend earlier today, in the past I would have kept going to class, hating every second of it, and making myself and everyone around me miserable because I was afraid to be perceived as a quitter. 

Maybe I am pulling the diabetes card. But pancreating a 5 year-old is a full-time job, and it doesn't take a break. I had to leave class about 4 times in the last month, because of d-issues at school.  Yeah, it sucked that my classes were at exactly the same time as his lunch and recess, but that's when most of the "d" action happened. 

Joanne pondered in her post:

"Sometimes I wonder if diabetes wasn't on my plate, would these things bug me so much? Is it that diabetes has worn me down to a point that I can't deal with issues in other areas of my life? I'm not sure."

I'm not sure either. I can't honestly discern how much an effect diabetes has had on my life, because I'm in the thick of it every day. There are so few people who understand the constant-ness of diabetes, and I'm quite sure I come off as a whiner to some in my life who aren't privy to what it's really like. To hold your child's life in your hands each day is a powerful, scary, overwhelming feeling. A feeling that is there EVERY DAY because of the insulin that we dose our children with.

That is the focus of my life right now.  And that is okay. I am okay with that. I am going to focus what time I do have on myself, volunteering at the kids' school and enjoying every second of it.

A slice of my day

Recovering from a wonderful 3 day weekend in the mountains. Back to a quiet home, preparing the weeks' snacks for the little diabetic. :)

One Year

Put up your feet my friends, grab a cup of whatever tickles your fancy (I prefer wine, but that is just me). This is a long one!

It has been one whole year since Adam’s diagnosis.

Over 3600 needle pokes to his little fingers.

Over 800 injections.

Approximately 90 site changes.

Lots and lots of Dex changes.

I wasn't sure what this milestone would mean for me/us. Honestly, we haven't talked about it with Adam. Maybe it's because I didn't want to make a big deal out of a sad day. But Denise just reminded me of something that I had never thought of before (really!) We SHOULD celebrate! Because this is the anniversary of the day his life was SAVED. Okay, I cry just writing that, but it is so true. 

We don't have any big plans because this is a ridiculously busy week for our family, but I think we should do something this weekend. We will be up at my parents' cabin with family, and I just realized that we went to the cabin over Labor Day weekend last year after Adam got out of the hospital too. I'm thinking a bonfire and s'mores are in order. 

I never really properly told his “diagnosis” story, so I thought I’d share that today. It’s been on my mind so much lately as I’ve been going through old pictures – automatically classifying things as “before diabetes” and “after diabetes.”

I began getting suspicious that something was really wrong with Adam when we went out to dinner and he drank 4 cups of milk in one sitting. And he was still thirsty. He’d been wetting the bed…and sleeping a ton. I would joke on Facebook about how he’d randomly fall asleep in the strangest places. That summer there were countless pictures of Adam sleeping. It’s sad to think about it now.

That night, I googled. Google can be a mom’s best friend or her worst enemy. That night, it was my worst enemy.

As I searched…I kept hitting on diabetes. I was thinking, “Steph, you are projecting this hypochondriac stuff on your kid. He doesn’t have this.” But I kept looking at diagnosis stories. And somewhere, someone mentioned a “sweetness” to their child’s breath. I went upstairs and smelled his breath as he slept. And damned if it wasn’t sweet. I didn’t want to say anything to my husband, because that would make it real. I still didn’t want to believe it. But I knew.

The next morning, he slept in. I knew I was going to take him to the doctor. I snuck into his room and cuddled in bed with him. I was literally thinking, “This is the last time life will be normal for us. Our life is going to change.” I just KNEW it.

On the way to the pediatrician’s office, I happened to glance down at a few empty water bottles in my car. They were from my local grocery store and happened to have JDRF labels on them. I thought to myself, “This is a sign. I know he has Juvenile Diabetes.”

In the pediatrician’s office, his urine was tested – lots of sugar. The nurse came in to prick his finger. When the number popped up, the nurse wouldn’t look me in the eye. I asked what the number was, and she showed me. It was 550. Tears sprung to my eyes. I didn’t really know what it meant, but I knew it was bad.

Our beloved pediatrician came in, and all she had to say was, “I’m sorry.” She gave me a huge hug and said she just about started crying when she saw his numbers. She’s been with us through the cleft lip, the reflux, the cataract and now this.

When I got into my car, on the way to the hospital, I looked at those JDRF water bottles on the floor again and I thought how incredible it was that so much can change with just one tiny drop of blood.

On my way to the hospital, I called Jason at the airport and stopped him from getting on his flight for work. I called my mom. I called my dearest friend. All while Adam is sitting in the backseat of the car, pretty much bewildered at what is going on. Heck, even I had no clue about how much his life was going to change.

I watched him get his first injection of Levemir and his first injection of Novolog. He was hysterical. And it blew my mind that I was going to have to do this every.single.time he ate anything from now on. For the rest of his life. 

One of my most vivid memories from that fog that was the hospital was when I went down to the hospital pharmacy by myself to pick up Adam’s prescriptions. The pharmacist plunked down two huge bags in front of me – those two bags held the items I would need to keep my son alive for the next month. I started crying as I handed over my credit card and I think the pharmacist was a bit freaked out. I cried as I walked back to Adam’s room and just kept on crying. It was the first time in our 3 days at the hospital that I cried. Once I started, I couldn’t stop.

I look back on all that now…and I still cry when I think about it. But I am also hopeful for how much we have overcome and how in just one short year, we are pumping, CGM-ing and kicking diabetes’ ass when we can. Adam has gone from a hysterical child getting pricked and poked every few hours, to a kid who can explain to an adult how to test his blood sugar and do it correctly right in front of them.

He’s a kid who says, “Eh, it doesn’t hurt that bad.” A kid who doesn’t flinch when I test him in bed or change infusion sets. A kid who asks “How many carbs are in that?” before eating something. He’s truly my hero.

 

Thinking back over the last 5 years – his cleft lip, his ridiculous reflux that required 2 medicines to control, his cataract, THE ‘BETES –  I realize that we are living in this place called Life Is Hard.  No one gets a free pass, everyone has their very own special challenges in life. But it’s a beautiful life, an amazing life, and it is Good.

There are so many lessons to be learned. I know that Adam was brought into my life to teach me that life is not perfect…yet it is perfect all the same.

When I was pregnant with him, and found out he was to be born with a cleft lip and perhaps palate, the world seemed to stop turning. I wanted to go back, start over in my perfect pregnancy with my perfect little family with no issues. I was afraid I wouldn’t love him when he was born because he looked different. I was afraid the joy of birth would be taken away because he wasn’t technically “perfect.”

And oh, how wrong I was. Falling in love with that sweet boy’s face with the little notch taken out of his lip. He was sweet, he was mine and he was perfect.

It was my first lesson in giving up on “what I think life should be” and what life just is. Accepting it. Celebrating it. Living it.

I won’t ever give up hoping for a cure for Adam. But I will help him live is life as if diabetes is just an afterthought, something that hangs in the background while he does all of the things he wants to do. I will make it easy for him. I will bear the burden. Because that is what us D-moms do.

 

Weekends are nice

I admit it.

I'm missing my kids now that they are in school all day long.

I wandered into Target the other day (okay, let's face it, I wander into Target MANY times during the week) and saw moms with their little ones, shopping and sharing popcorn. Just like we used to do during the day. I miss that. I miss that that stage of life has suddenly passed me by. Where did these last 8 years go, anyway?

We have a lot of friends our age that are just starting out with their families. They are knee-deep in diapers, toddlers, tantrums and the Wiggles (**shudder...one thing I DON'T miss is the Wiggles**) It's gotten to the point where my hubby has a tiny bit of baby fever.

But then we are quickly snapped back to reality with our own uber-busy life.

And let's face it...I'm just not willing to go belly-up to the craps table, roll the dice and see what genetic cocktail Lady Luck has for us this time.

The upside to all of this is that I am really enjoying the time I have with my kids when they are not in school. Today I built Lego castles with Adam in the morning and then went shopping and to the library with Sydney. We found a cozy spot and she read about hamsters (did I mention we have a new pet??)  and I started a new book.

Life has a nice balance to it right now. Aside from diabetes, of course - which always seems to throw a wrench into my well-laid plans. Like on Friday, when I was in the middle of my Biology lab, I got a call from the nurse telling me that Adam's infusion set fell out. I just looked around my classroom and thought, "REALLY?? Really?" So I left class, zipped over to Adam's school and inserted a new infusion set and ran back to class and didn't miss but 5 minutes of lecture.

Just call me MacGyver.

Adam Takes Charge!

Let me tell you - it was much harder than I thought to find the perfect book to read to Adam's class! Some were too long, some were for older kids, some were about kids on MDI. 

After purchasing nearly every book on Amazon related to diabetes at school...I finally found a winner:

 It was perfect! Simple, easy to understand wording for 5-year-olds - CHECK! Story revolves around a child on a pump - CHECK! I excitedly showed it to Adam and his face promptly fell and he said, "Hells NO! That book is about a GIRL!" 



Okay, so he didn't say "Hells NO." But it was the 5-year-old equivalent. Complete with eye-rolling. 

But, I had found the perfect book! I was not going to give up that easily. And I knew that I was far too lazy to reinvent the wheel and create a book all about Adam like the amazing Reyna did.

So I came up with the next best thing: Lara Adam Takes Charge!

We had to eliminate all traces of that sweet, little girl. So, I got out my glue stick and went to work:

 

I went to Adam's class this morning and read the book. They really enjoyed it! And they liked all of the pictures of Adam, so it was win-win for everyone. They asked some good questions too - like, "Does he have to wear it all the time?" "Does diabetes ever go away?" And the most important question...."Does it HURT??" Adam answered honestly and said, "Sometimes it does, and sometimes it doesn't."

 Adam really enjoyed his "rock star" status this morning. He was answering questions, pulling out his pump and telling everyone "Hey, wanna push some buttons??" LOL! To which I quickly said NO! It was a good little discussion. Some kids had heard of diabetes, some had a grandparent with Type 2.


I also wanted to share our "communication" sheet** that I borrowed from Reyna and added our own things to it - for example, Adam's eye drops, which he gets at lunch time. I LOVE this log sheet - I'm able to see what goes on during the day and make tweaks if necessary.

The nurses like it too! I feel totally informed of what goes on during the day, and they often call me  (like today, when he was getting a BG check before a class birthday treat and discovered that he was 54!) We are still changing things up a bit - we've noticed that he goes REALLY low after PE, even if he's on the higher side to begin with. Like today, he was 189 before PE, so I figured he'd be fine. Well, an hour later he was that lovely 54, so we have some things to think about. They must really run them hard in PE, because when Adam plays outside, he doesn't drop that fast usually. Ah, diabetes. Must you be so persnickety?

**And, YES, I totally posted this communication sheet because his numbers were totally awesome that day. Full disclosure! 'Cause today, they weren't that great. :)

Adam's Personal Snack Bar

Sigh. 

Well, my child has already figured out how to beat the system. Whenever he is hungry (which is all the freakin' time) he decides that he MUST be low...so he heads off to the health office only to find out that he's perfectly fine (or a bit high). And he just HAS to have a cheese stick.

Of course, we all know that hunger is a symptom of low blood sugar as well as high blood sugar. But where do I draw the line? He's already a 'frequent flier' in the health office due to the diabetes, but now he's there more often than he needs to be. Now, for the record, the nurse and her assistant have no problem with this...but I do. He is going to start missing a lot of class time. Is this just a maturity issue? He still cannot distinguish between highs and lows...and I certainly don't want to tell him NOT to go to the nurse.

But it's getting kind of ridiculous now that I've already had to refill his "cheese & snack" drawer a week and a half into school. My little grazer has figured out that not only is the health office a place to test his blood sugar, but also free snack time as well.

Any BTDT?

Storytime

I've kept my child-friendly "diabetes" books on a shelf up until now.

The beginning of school has been crazy-busy, and Adam has had such a positive experience at school and I honestly thought that I might not need to explain diabetes to a kindergarten class. After all, I hadn't observed any kids asking Adam about his insulin pump, or his Dexcom. For some silly reason, I just thought no one noticed.

Today, while we are driving to Adam's eye doctor appointment, he says to me, "Mom...I have to tell you something. Kids at school keep saying 'Adam is sick....Adam is sick' and I am NOT SICK!" I know this is because he visits the health office so much, and really, the kids have no clue what is going on. All they know is that he leaves the classroom a lot. But he feels like he is being teased.

I asked him what he told them, and he said, "I just told them that I have diabetes." He is also saying the kids are asking about his Dexcom transmitter on his arm too.

I asked him if it bothered him and he said yes. He is always such an easygoing kid, that I often forget that things do upset him.

So, I'll be talking to his teacher about setting up a time to come in and talk a bit about diabetes on a kindergarten level, and read our books. Hopefully this will stop some of the teasing and questioning.

Now I've got to figure out how to explain this in 5 year old terms! I think I'm gonna go peek at Reyna's book she made for Joe. :)

Routine is Good.

First off...this SAHM gig? I had all of these grand illusions that once both of my kids were in school, I'd have scads of time to get things done around the house.

Really? Ha! The joke's on me. In fact, I feel like I'm BUSIER now than ever before. And I haven't even started school for myself yet. Yikes! I am running every day - school, gym, shower, school, oil changed, bank, store and school again. It's nuts.

But, I do have to say that routine has been GREAT for Adam and his blood sugars. (I'm expecting a bolt of lighting from the diabetes gods to strike me down anytime now that I declared that.)

He is not "grazing" all day long, as was his habit before, so I am getting a much better picture of whether or not his carb ratios and basals are on target. And, by golly, I think they are for the most part. Here's his school schedule:

6:15 am - wake up, get fasting BG

6:30 am - eat breakfast

7:15 am - walk to school, school begins at 7:45 am (I KNOW!!)

9:00 am - first BG check of the day, get insulin for snack (we've decided on bolusing him for 1/2 of his snack carbs, since he has recess immediately after. This is working well for us.)

10:50 am - BG check before lunch

11:20 - back to nurse for insulin for lunch

1:00 pm - final BG check of the day (unless there is PE or he is not feeling well)

2:15 pm - pick up from school 

School is going well, and we are still making some tweaks to his lunch routine, but overall, things are going GREAT. I have lots of communication with the nurse - for example, today he felt really hungry at 12:45, so he went to the nurse and he was high - in the 240's. So she gave him some water and a cheese stick and we decided to test him again at 1:30 since he still had insulin in his system from lunch. And sure enough, at 1:30 he was down in the 160's. I am so thankful for the communication. And you know, go figure, because yesterday at his 12:45 check he was only 80. And he had the SAME LUNCH!  Ah, diabetes. You love to keep us guessing.

My goal for the rest of the week is to "wean" myself from school a bit. I think Adam thinks that I will be at lunch every day, and that is not the case. But I am so proud of him and how he has learned so many new things in the last week. And he is being so responsible with his diabetes care - I love the fact that he will make it known when he feels like he needs to be tested. That was one of my biggest worries - that he'd sit quietly and be afraid to tell someone he doesn't feel right. 

So that is my update! We are quickly approaching Adam's one-year diabetes diagnosis, and I have lots of feelings surrounding that. However, when I think back to our diagnosis and I compare it to now - I can't believe how far we've come and how blessed we have been. Diabetes sucks, but life is good.

Adam's First Week of School!

Well, ladies (and gentlemen?) I have to declare our first week at school as a success. It was a busy week, and I sure as heck didn't get any of that "down time" that I imagine other mothers get when their last child goes to school all day, but overall, the week went very well. (Okay, all 3 days of it.)

I have to give major props to the staff at our school. LOVE THEM. Adam's nurse and health assistant are phenomenal. They had a 6th grader with T1D last year, and they could have said, "oh, this is no big deal, we've got it covered." But T1D in a 5 year old is very different than in a 12 year old. And they knew that! Our health assistant is on her own 2 days a week while the nurse is at a different school, and she told me that she even had a nightmare already about giving Adam too much insulin through his pump. I felt so bad that she was having "diabetes dreams" like I do, but in a strange way I was happy, because it meant that she GOT IT. That diabetes is a big deal...and insulin is a touchy beast.

One thing that I would highly recommend to all moms of little T1D kiddos going to school is to put together an "All about me" letter. I gleaned information from Hallie and Reyna and came up with a flier that has Adam's picture on it and it starts out by saying:

"Hello! My name is Adam **** and that’s my photo. I am a student in Mrs. Goodman’s class, and I have Type 1 diabetes.  My body cannot make insulin, so I wear an insulin pump at all times. It is usually in a belt around my waist, or clipped to my waistband"

It goes on in bullet format, talking about the signs of a low, the signs of high blood sugar, the fact that he needs access to water and the bathroom whenever he wants, and most importantly, to BELIEVE him when he says he doesn't feel well and send him to the nurse. 

I handed these out to the nurse and his teacher, and they were very excited about it and asked if I could print more so they could pass them out to all of the staff that would come in contact with Adam - ie: playground aides, cafeteria aides, music teacher, etc. and I said sure! They handed them out in their meeting on the first day of school, and ever since then, I've had aides come up to me to say, "You are Adam's mom? We got his flier!" It was a GREAT way to build relationships with people I didn't know before and to make them aware of Adam's special needs.

I also made up "low kits" for Adam's music teacher and P.E. teacher - got the great idea from Donna to put them in clear pencil pouches so they are easy to carry. They have juice boxes, glucose tabs/gel and the above flier, outlining the signs of a low. They appreciated having these as well!

I think it helps that I do have a good relationship with the school already, since my 3rd grader has been attending for 4 years. But she has never been to the nurse (I know!) in her previous years, so I didn't have a relationship with the health staff. I also chose a different kindergarten teacher for Adam than Sydney had, so she was new to me as well. 

I was reading this post over at D-Mom today, and it really hit home. Building a relationship with your child's school is immensely important. On some level, I knew that already, but after only 3 days, I am seeing how important it is. They are willing to be so flexible with us, and I think it's because I didn't go in there with guns blazing, saying, "This is how it's gonna be." My favorite line from that post is, 

"It’s about being able to ask a favor without it feeling like a favor." Very true.

My goal in all of this is to make diabetes management as easy as possible for them, so that in turn, they will not look at Adam as a "burden." And I know that our health team would not think that, but let's face it, diabetes is a fricken' PITA most of the time. We live it day-to-day, and now so are they, especially with little ones.

Adam has had a fantastic experience at school. The health office is directly across from his classroom, so he has no trouble finding it for blood sugar checks (he goes with another person if he's feeling low) and both his teacher and the nurses have already said that he's been a joy to be around (::proud mommy moment!::) 

He told me that his music teacher came up to him and said that she has diabetes too (Type 2) and he was excited about that (well...you, know, not excited that she HAS diabetes...) I am thrilled that everyone is so open with him, and open to learning more about Type 1. I emailed his teacher a great Power Point that my mom found off of the American Diabetes Association website - it is a great, simple, short presentation about diabetes - and it really gets the point across regarding the difference between Type 1 and Type 2. She was very receptive to it, since she wasn't familiar with Type 1. 

There are so many tools out there to help your child at school. But the best tool of all was my wonderful friends of the DOC. You guys helped me SO MUCH. The nurse was impressed with all of the information I had ready for them, and there is NO WAY I would have been able to do it without y'all. Seriously. 

(((Group Hug!!)))