...And Gus goes to school too

Robby started preschool this year.  I can't even begin to tell you how much I struggled with this.  I wend back and forth on this decision countless times, but finally decided that it would be good for me to learn how to teach and trust others to care for Robby (not just baby-sitters and friends).  

I approached the director of the preschool Tyler attended and asked if she was willing to take Robby on as a student, given his special needs.  Bless her, she agreed (unlike a public school, a private pre-school can reject students because they might be a liability or extra work).  My biggest hang up was in leaving him for 5 hours.  I knew this would entail one snack and one lunch, which translates to two BG checks and lots of work for them and me- not to mention the stress, so I asked the school director if she would let Robby come for half days.  She agreed and was even willing to pro-rate the cost for me. Needless to say, they have been more than generous to us and our situation.  My hope is that by the end of the year he is attending full day, but we will need some time to work up to that.

When I considered my reservations, I always tried to do what is best for Robby and I knew that sending him to have a fun time twice a week for 2 1/2 hours was going to be a good thing for him, even if I was going to miss him like crazy.  When the first day finally came, Robby was so excited.  Oh man I love watching this kid when he's excited.  The excitement bubbles over and he can hardly contain it.  Here he is eating breakfast with his backpack on- ready to go!

 And here's my darling little pre-schooler.

For him, his first day was a HUGE success.  He loved every minute of it!  For me, it was a bit of a disaster.  But oh well!  Before school started, I met with the director, her assistant, and his two classroom teachers.  I trained them all and left them each with a quick cheat sheet for Robby's diabetes care as well as a binder with step by step instructions for everything (including pictures).  It is quite impressive if I do say so myself.  So when I dropped him off on the first day at 9:00, everyone was ready to go.  Our plan was for the preschool director to do a BG check at 10:00 and call me with the results.  I got a call just before 10 letting me know that Robby had reported that he felt low, so she did a BG check and it turns out he's not low, but extremely high (like 450 high).  At least the kiddo knew what to do when he didn't feel good.  So I ran back over to give him a shot of insulin, rather than having her deliver a bolus of insulin through the pump (when he's that high a shot works better and faster).  Then an hour and a half later when I came to pick him up, I asked him if we could take his picture outside of the school before we headed home, he then started crying (my first cue that he's low) and told me that he felt really low.  A quick BG check in the parking lot and sure enough, he was at 49.  Blast, from 450 to 49 all in one morning.  Poor kid must have felt like crap.  It turns out that adrenalin makes the body insulin resistant and I guess Robby was a combination of super nervous and super excited, thus resulting in the super high.  Wow.

We went home and had lunch together.  That is now my favorite part of the day.  We sit and eat and talk about his time at preschool (no m&m bribery needed).  I love hearing about the world through his eyes.  It's so exciting and fun.

Things have leveled out since then.  The first few weeks, he continued to run a little high, but not high enough to require me to head back to give him a shot at least.  I'm so grateful that he's having such a positive experience.  I'm so grateful that he's a good sport about leaving early and about having a different snack than the other kids (his sweet teachers package up the daily snack and send it home for later), and I'm extremely grateful for capable and loving people who are willing to take care of my boy.

Preschool is such an adventure and we're all excited for our Gus.  Here is Tyler asking Robby about his first day of school.  What a good big brother Tyler is- i love their sweet interaction.

And no, Robby's first day did not get a "first day hooray party." Mostly we were just glad he survived the day.

We rocked the walk!

I'm slow to update this blog, but I wanted to post a few pics from our JDRF Walk to Cure Diabetes, even though it was a few weeks ago.

But first, thanks to everyone for your support. We surpassed our fundraising goal and are so very grateful for family and friends who donated to our cause. Our Chick-fil-A event was also a huge success. It was so great to see so many people come out to show their love and support for little Robby. I was truly touched.

The actual walk was great. Tyler was given my Garmin watch and foot pod and was in charge of tracking our pace and distance. I think it kept him engaged and entertained. Robby rode most of the way in the wagon and seemed to be content to take it all in.

3/4 of the way through the walk, the boys found this tree with all it's horizontal limbs and just couldn't resist, so we climbed trees for about 15 minutes, which was fine by us. At about that same time we met up with our friends, the Porters, who also have a son with Type 1 Diabetes.

It was nice to spend some time walking with them. Quinten was very cute to Robby. I could tell that he understood and appreciated the bond that they share and I'm sure he feels proud to be a positive role model for Robby. I love how cute he is trying to crouch down in the picture to be right next to Robby. Sweet. Toward the end of the walk, I saw two little babies (each one no older than 10-12 months old), one had a back pack strapped to his tiny little back which held his insulin pump and the other had a pocket sewn directly onto the back of her little onesie to hold hers. My heart sank. I can't imagine how difficult it must be to manage this disease in an infant that young. I had a lump in my throat and tears in my eyes as I considered the constant worry those mothers face all day, every day. It really hit home and reminded me why we were all out there walking that morning.

Again, thanks for your support. It was an awesome experience.

Dump trucks, dirt, and superheroes

How on earth did I get so lucky to have this much cuteness in my life!?!

In case you're wondering, there is still time to donate to the Walk for a Cure on behalf of this darling little dude. Visit our website at www2.jdrf.org/goto/teamrobby.

*We recognize that the website has a minimum $25 donation requirement, but if you'd like to donate an amount smaller than $25, feel free to send a check to our home address. Make checks payable to Juvenile Diabetes Research Foundation (or JDRF). We will be able to submit those on the day of the event.

Thanks again everyone! We're getting excited for our walk!

JDRF Walk to Cure Diabetes

See that little guy on the far right with the blond, fluffy hair? Yep. That one. He needs a cure. He is a brave little boy and has endured well all that diabetes has thrown his way. But we are hopeful. For the first time, scientists are predicting that a cure is achievable during his lifetime. So I will hang on to hope and I'll do my part to bring that cure to my little boy.

The juvenile Diabetes Research Foundation (JDRF) is the worldwide leader in funding research for type 1 diabetes. I strongly believe that when a cure is found, JDRF will have played a major role in that process. We love JDRF, their mission, and the support we've already received from their outreach programs.

On October 22, our family will be participating in the JDRF Walk to Cure Diabetes. We'd like to ask for your support in our fundraising efforts for this event. There are two ways you can donate to team Robby:

1. Go to www2.jdrf.org/goto/teamrobby. Click on donate to this team or donate to a walker- it all goes to the same place (I'll leave a link on my sidebar).

or

2. Join us for dinner at the Keller Chick-fil-a (Alliance Town Center) on Monday, October 3rd from 5-8pm. Order dinner and mention that you're supporting Team Robby and a portion of the proceeds from your meal will go directly toward our goal. We'd love to see you there!

Thanks again everyone for your support and generosity!

A Diabetes Anniversary

As I mentioned in the post below, Saturday was the one year anniversary of Robby's diagnosis. Goodness, I can't believe we survived the first year. I spent Saturday morning out on my bike (my favorite place to reflect). I remember so vividly back to those first few days, weeks, and even months. There were moments when I literally did not know how I would make it through the next day. The learning curve is so steep those first few months. There is so much that you HAVE to know to help your child. Each day presented itself with new problems to solve, new info to digest, and new worries to address. Each day was also filled with scary, uncertain moments in which I worried if my next move would literally cost my child his life. And the worry didn't end with the end of the day, my worry intensified in the night time hours. The opportunity for escape was zero. If I couldn't figure out how to take care of my child, I for sure couldn't leave him with someone else while I re-grouped and rested. The stress and problem-solving was unrelenting.

As with all trials, there were a few key things that got me through. Top on that list was a supportive, loving husband (who just so happens to be super smart). John is every bit involved in the every day care and worry of diabetes as I am. I always know that if I have any problem or concern, he is right by my side to help me through it. He has also been extremely good about rearranging his busy schedule to accommodate my need to get out and escape the stress. Whether it's a bike ride, an evening run, a girl's night out, or just a good night's rest in our guest bedroom (with no diabetes duties), he always made it happen for me. Love.

I am also very grateful for the support of good friends and loving family members who shared their interest and support in countless ways.

And lastly, I don't know where I'd be without those gentle whisperings and nudgings of the Spirit. Just yesterday as we were leaving for church, I had the thought to put a juice box in my purse, even though I had a few other snacks, we had a fully functioning CGM that was reading fine, and Robby had had enough Easter candy that morning to sustain him for three days. Wouldn't you know it, in the middle of the service, Robby started acting very irritable and cranky. A quick poke, and we discovered he was at 46 (the CGM had gone way off course), but thankfully, I had that juice box ready at my finger tips. Those moments remind me that I'm not alone in this, and that Robby never will be either. I am grateful for a loving Heavenly Father who reminds me frequently that He's there, watching over each of us.

...And so, Saturday night, we wrapped up the day with a simple celebration. We celebrated that our family has survived the first year, and we celebrated that things are much, much easier now. We celebrated that Tyler has been a very helpful, watchful, protective, and sympathetic big brother, and we celebrated that Robby is a brave boy who has endured many tough things (far more difficult than I think is fair for such a little body). We figured that Robby has been poked for BG checks close to 3,000 times in the last year. He's had 150 pod changes, and has endured a couple hundred insulin shots (thank heavens we got on that pump so quickly, and thank heavens we only have to revert to shots when things occasionally go wrong with the pump). We are proud of him, and we are proud of us!

For our celebration, we went to the movie African Cats by Disney. Both boys really loved it and John and I found it to be quite fascinating as well. The only problem is that Robby talked during the ENTIRE movie. I finally had to take him to the lower seats that were empty so that we wouldn't disturb anyone. But he sure was cute and I sure wasn't going to stop his running commentary:

"Mom! dose yions fighting!"

"Oh, yook at da beebee cheetas! They no find their mommy!"

"Yook! A tah-tol! I yove tah-tols! The yion twy open it!"

"ooo...it's waining and dunder. I no wike dunder."

"What dat, mommy? Is dat doggie? He mean to cheetas."

And every time the lions would growl, Robby growled right back! It was definitely entertaining.

After the movie, we stopped off at the store and got a gallon of ice cream because Diabetes or not...we're celebrating the good old fashioned way...with comfort food!

What Diabetes Looks Like

Well, we survived a year. Yesterday marked our one year anniversary of Robby's diagnosis. We did some fun things to celebrate our survival of one tough year for us, but I'll share more on that later. For now, I thought I'd document what our "new normal" looks like.

In the world of diabetes...

...this is what a bad low blood sugar looks like. This incident was shortly after diagnosis when Robby still wasn't too keen on juice boxes for lows. We were driving down the highway and Robby's BG was dropping like a rock, and he was acting very drowsy. We pulled over and I fed him yogurt with my finger since we didn't happen to bring a spoon. Luckily, we now have several fast sugars that Robby likes for lows.

...This is what coming home from the hospital looks like. This is the amount of stuff they sent us home from the hospital with when Robby was diagnosed. The stash consisted of books, samples, supplies, brochures, pamphlets, log books, charts, graphs, reminders, notes, prescriptions, videos, etc...

..This is what good detective work looks like. The Omnipod (Robby's insulin patch pump) is applied with a large patch of adhesive. We believe that Robby is either highly sensitive to it or has a slight allergic reaction to it. Oddly enough, the adhesive on the Dexcom CGM doesn't bother his skin at all. These are only a few of the products I have tried in our search for finding a barrier to protect his skin- Unisolve to pull off the adhesive, Tegaderm, New Skin, Skin Tac, IV 3000, Opsite Flexfit, Bard barrier, All Kare, and IV Prep. Finding a solution to this problem almost consumed my every thought for a while. I worried that we would have to go off of the pump because the itchiness and blistering was so bad. In the end, Opsite Flexfit is about the only thing that will keep him from getting horrible, itchy, blistering rashes after pod changes. That is, unless some other systemic issue is at the root of the problem (like hives from an allergic reaction to medication). In that case, NOTHING helps and the site will blister like crazy.

...this is what a failed pod change looks like. It was just too sad. I couldn't help take a picture. Poor Robby hates when we have to take those pods off (as mentioned above). On this occasion the first one failed to insert correctly and Robby refused to let us take it off, so we put the new one on and left the broken one in place until he was okay with us removing it later that day. Can you tell that we are overly-anxious for OmniPod to release the newer, smaller version of their pods next year??? That poor little bum! And because I get asked a lot- no he hardly ever notices it's there, unless the skin starts to get itchy. As people always say, kids are pretty resilient. These insulin filled pods are removed every three days (unless something happens to it during a rough wrestling match with big brother). During the insertion process (all done with a push of a button on the remote), a needle is fired and cannula inserted under the skin. Yes, that does hurt, and yes he does cry (which usually makes me want to cry too), but once that is done, he barely notices it's there.

...This is what educating others looks like. This is Nanny learning the ropes to some of Robby's care. We believe very strongly that it is our responsibility to help educate those who are involved in Robby's life. So far, we haven't done a very good job of it. There is so much to teach and caring for a diabetic is very complex. But, I have typed up a "manual" of the basics and hope to share it with more friends and family members. I want Robby to have a normal childhood and that means play dates, family visits, and time away from mom and dad. It is unreasonable for us to be the only two people in the entire world who know how to take care of our child. So far, we do have a few friends and two WONDERFUL baby-sitters all trained and good to go. It gives me peace of mind know that I have people I can rely on to help.

...This is what the changing table looks like after a particularly bad night. We've decided that there is a direct correlation between the amount of trash left behind in the morning and how awful the night was (or how little sleep we got). Sometimes his changing table looks less like a changing table and more like a nurses station.

...This is what toy transportation looks like. If you don't have enough pockets or hands to carry around your favorite firetruck, you can simply tuck it safe and sound in the belt of your CGM carrying case.

This is what pajamas look like. Doesn't look any different than any other pair of pj's (minus the CGM belt)...Until you look a little closer and see that his mommy has cut slits in tops of the feet so that she can access the sleeping child's toes for finger pokes in the middle of the night (Robby prefers toe pokes over finger pokes...and since this is the one thing he can actually has control over, we totally go with it. We've also found it's a little easier because I don't have to stop him from playing to poke his toe, and his toes rarely have anything sugary or sticky on them that might throw off the reading. Plus, we figure he has a lifetime of fingers pokes ahead of him. We might as well use his toes while we can and save his poor, little fingers a bit).

This is what true friendship looks like. Back in October, Jen arranged for a few friends to meet at the park for lunch and a play date to celebrate my birthday. She made a yummy treat for everyone and then handed me this sheet of paper and said, "I'm pretty sure they are 18.2 carbs each." Tears. This meant so much to me, I can barely even express it. To me, this was her way of saying, "I'm in this with you. I get it, and I totally support you." A true friend is someone who understands your burden and then tries to help you carry it.

And this is what $1,000 looks like. This is our three month supply of pods. A box full of these arrives on my doorstep every three months. We also get shipments of Dexcom sensors, test strips, and even insulin. The UPS and FedEx guys know us quite well by now. I am grateful for good insurance that has allowed us to give Robby what we feel are the best tools and technology to help care for his needs. It has been a huge blessing.

...And this is what makes it all worth it!

(I'll walk to the ends of the earth for a good cuddle session)

Cowtown

A couple weeks ago, John and I ran the Cowtown 10k...together. The 10k part isn't the amazing part, it's the together part that is so miraculous. It has been a very long time since we have been able to participate in any event together.

When Robby was diagnosed, we weren't sure if we'd ever be able to do stuff like this together, but we did it! It took a lot of preparation and planning, but we did it! I can not begin to tell you how blessed we have been that we not only have one amazing young woman that we trust and who has been willing and capable to be trained on Robby's diabetes care, but we have TWO...and they are both AMAZING! This has been such a huge blessing, and we were grateful on this morning that one of these fantastic ladies was willing to drive over at 5:45 am so that we could get to the race on time.

We carpooled with John's friend Mark and my friend Jen, which made this dark, cold morning a little more exciting.

*Plus, we were able to take this totally awesome pre-race picture that I think should be entitled "reflective gear...it really works."

Before we started, I made it completely clear to John that he didn't have to run with me, that he could go at his own pace (which would be much faster than mine). And bless his heart, he made it quite clear that this was our "date" and we'd be running together.

...and I'm glad that's what we did. We had a great time running, laughing, and talking together. It was a perfect date with my sweetie. I'll also never forget when John fielded a phone call from the sitter on his cell at mile 5, just as we were ramping up our pace for our finish (she was calling to let us know that Robby's blood sugar had been dangerously low when he woke up and it was also time to walk through the numbers for the breakfast bolus). Bless his heart, John continued to hold our quickened pace even with the phone to his ear.

And the best part is we even got to cross the finish line holding hands :)

Update

Thanks for the words of support, advice, and prayers. Things have settled down a bit with the crazy blood sugars. We've had a few really good nights in the past week or so, and that has helped immensely. I'm pretty sure that the instability has had everything to do with the fact that in the past 2-3 months, Robby has had:



three ear infections

one bout of strep throat

one week of the stomach flu

one allergic reaction to penicillin

and four new molars

Throw in a couple major holidays and some pretty major changes in the weather patterns, and you have the perfect storm for a diabetic child's BG. I'm hopeful that all this illness is over and that we will see a few more regular patterns start to emerge again. We also adjusted several of his pump settings, which has helped a bit as well.

Anyway, we'll keep our fingers crossed for healthier days ahead and more stable blood sugars (and a little more sleep)!

Now with things settled down a bit AND we have a new computer that doesn't crash every time I try to use the Internet, I'm going to attempt to get caught up on posting a bit about our Christmas celebrations this year (I'll be lucky if I get it done before Valentine's Day!).

I need a little help from the DOC!

Due to some major computer problems (Santa should have brought a new hard drive), I can not access our pictures from Christmas. So I thought I'd take the opportunity to blog about what's really on my mind- that damn diabetes (pardon the language, but as long as my kiddo has diabetes, there are a few choice words that I can't seem to get out of my vocabulary).

Basically this post is a cry for help from my friends in the diabetic online community (the DOC), so if you don't know anything about basal rates, feel free to skip this post and come back later when I have pics of my little darlings at Christmas!

All right, so here's my frustration...NIGHT time basal rates. Killing me. I try VERY hard to keep diabetes in the background of our lives. We quietly go about our d-routines, not making a big deal out of it. We work hard, but try not to let our kids (and others for that matter) see our stress and worry. But at night times, diabetes RULES our universe. Here's the run down:

Day time basal rates, IC ratios, and corrections all seem to be dialed in almost to perfection. A few highs and lows here and there, but nothing out of the ordinary for a small kid like Robby (he's two), but at night time, there is not one ounce of predictability or regularity. We had three good months of fairly stable numbers, day and night, but these last two months have flipped everything upside down. He'll hit 350 with multiple corrections for several nights in a row and then for no reason at all, three nights later, he'll be low and we'll be feeding him several times to bring him back up. His insulin absorption rates seemed to have changed (much slower than normal), and he even metabolizes carbs slower as well.

We are frustrated beyond belief. A good night's rest doesn't exist. Thankfully, the Dexcom allows us to get a few hours of sleep here and there, but I'm exhausted and close to tears most nights. We feel like we've tried everything. We've dialed basal rates high, and then we've tried adjusting them lower, but with no predictability as to which nights he'll run high and which nights he'll be super low, it's impossible to get it just right. We even tried leveling out the entire night time basal program to .05/hour (he usually has three different rates throughout the night) to see if we could recognize any natural patterns or rhythms. Nothing. Nothing was ever the same. The only thing we know is that he's either SUPER high and seemingly insulin resistant (we'll give multiple corrections, set a higher temp basal, and on a few occasions have had to resort to a shot to bring him down) or he's drifting low all night (that's running on the same basal program. No changes). He's never in the middle. One night he'll use almost a total of 7 units at night and the next night, he'll use barely 3 units.

What gives??? What am I doing wrong??? How in the world can I get some sleep???

I know that there are a bizillion factors that can effect blood sugars, but sheesh! We eat early (about three hours before Robby goes to bed) and our meals are typically similar in their carb/fat/fiber make up. He's has had quite a bit of illness- one ear infection, two colds, one bout of the stomach flu (for sure without the Dex, we would have ended up in the ER with that one...mercy!), and just yesterday I noticed he's getting at least two new molars. During those times of illness, I expect crappy numbers, but even on days when he seems to be feeling well, we still can't seem to get any predictability with our night time numbers. Is this just the nature of the beast or is there something different I could be doing?

Help. This tired mommy needs a good night's rest.

Update

In case you couldn't tell from my last post, my admiration for Cliff Scherb is quite apparent. You see, our family is quite active and cycling is a part of our lives that we genuinely value. When Robby was first diagnosed, we didn't know how that would effect some of our life long goals and aspirations for our family. Would we still be able to bike the Oregon coast as a family? Will competitive events be something we have to let go because our son resents the fact that he can't participate? Will family bike rides be confined to the limits of our neighborhood?

That is why when I stumbled across Cliff's story, I was captivated, inspired, and thrilled. Thrilled to learn that nothing, not even diabetes, will hold back my little boy!

And now, here's the best part- if you check out the comments section of my last post, you'll notice that Cliff himself left me an encouraging comment with a link to a video about his Kona experience. Are you kidding me?- nicest guy ever! The video is awesome. Check it out (compliments of Cliff himself)

(...oh, and in case you're wondering, yes, I'm beside myself with excitement that Cliff actually took the time to leave me a comment)

You're in good company...part 2

For sure Robby is in good company as well. I'm certain that as he gets older he too will be curious to know "who else has diabetes, Mom?" I've already got my list ready. Sometimes when you're looking for connections, they seem to find you. About a month ago as I was talking to our next door neighbor, I learned that she has Type 1. And then just last week as I was picking up Tyler from school, I noticed a young mom walk past with her little boy. She had slung over her shoulder the same JDRF backpack we were given at the hospital. Of course I stopped her and we began chatting about her first grader who has Type 1. I'm also looking forward to getting together with a few other families in our area that I've met online. I already had the opportunity to meet Joanne, and I can't wait to get together with our kiddos as well.

And of course, there are a few superstar Type 1 heroes that we hope Robby will look to for inspiration as he learns to live life to the fullest with Type 1 Diabetes.

First, there's Sean Busby, a professional snowboarder

Pop star, Nick Jonas (a fellow OmniPod user)

The riders from Team Type 1. A few years ago I read an article about Team Type 1 in Bicycle Magazine. At that time I knew very little about Diabetes, but I still understood enough to know that what these riders were accomplishing was quite remarkable. It was also the first time I had ever heard of a CGM and the OmniPod. Little did I know at that time what a HUGE part of my life both would become!

The list continues with professional football players, baseball players, basketball players, marathoners, swimmers, hockey players, and a handful of entertainers.

But last week when I read Lorraine's post about Cliff Scherb, my heart was won over.

Cliff is a professional triathlete...and a type 1 diabetic (and an OmniPod user). I seriously never thought those two words could ever exist in the same sentence. Cliff competes in Ironman events, including the World Championships in Kona. When I told John about Cliff's accomplishments, our conversation went something like this:

Me: "Wow. You're never going to believe this. I read about this guy who's been to the Ironman championships and he's Type 1."


John: "That's cool. So what was his time? Did he make the cut-off?" (John thinking there's no way this guy is for real)


Me: "His personal best is 9hr 7min."


John: silence. eyebrows up, mouth open, silence.

(quick reminder- the ironman is a 2.4 mile swim, 112 mile bike, 26.2 marathon)


That time is superhuman for someone with a fully functioning pancreas. I can't even fathom it for someone who is insulin dependent. Without being seriously vigilant, that level of physical activity for that amount of time could be lethal for a type 1 diabetic, but Cliff has pulled it off amazingly. He attributes his ability to compete and manage his insulin needs to the OmniPod (can you tell how much we love the OmniPod?). No shots, no tubing and fine-tuned basal rates are a necessity

Lorianne also has a great link to this video about how Cliff uses the insulin pump. I encourage you to take a second to watch it. I think it's the best explanation I've seen for what we're trying to accomplish with Robby's CGM and OmniPod combination. If nothing else, take a second to watch it to understand how it all works.

I'm amazed by the level of dedication and discipline that would be required to accomplish all the Cliff has done, and I love that Lorianne's article also portrays what a genuinely nice guy Cliff is. Robby is lucky to have some pretty great heroes to look up to.

Six things

According to dblog day, today I'm supposed to blog about the six things I want you to know about diabetes (I know...who comes up with this stuff???), but since I'm trying to raise awareness and educate, I figure I'd give it a go.

Here they are in no particular order:

• 1. type 1 and type 2 diabetes are very different. Robby has Type 1 diabetes. It is an autoimmune disease; meaning that for reasons not even science can fully understand, his immune system decided to attack and kill off the insulin producing beta cells in his pancreas. He no longer produces insulin and never will. There is no cure. He can not manage it with medication or diet changes. He straight up needs life-saving insulin delivered to his body through shots or a pump. Type 2 diabetics suffer from some of the same symptoms and some of the same heath problems caused by this disease. The main difference is that type 2 diabetics still produce insulin, but for various reasons (diet, weight, genetics, etc) their body doesn't utilize it effectively. Some type 2 diabetics can manage and control their diabetes with the help of diet changes, exercise, and medications. Some (not all) can even reverse their diagnosis.

• 2. Robby can eat whatever he wants. When Robby was first diagnosed, people frequently said, "Well, this shouldn't be so hard for you guys since you already eat so healthy." I'll admit that Robby is better off because we eat healthy, but so would any kid be. Robby has no diet restrictions. He eats as any kid his age would, and I step in and act as any kid's pancreas would. Carbohydrates provide the body with the energy it needs to survive, insulin is what unlocks the energy in those carbs. EVERYTHING has carbs (except meat, cheese, and pickles). Sugar free stuff isn't necessarily carb free (it very rarely is). When Robby eats, all carbs must be counted and then given the proper dose of insulin for those carbs. Having said that, there are still some foods that are particularly nasty and difficult (pizza and mac and cheese). We want Robby to feel like a normal kid so we try to tackle these difficult foods (except mac and cheese, it's so tricky that we've pretty much banned if from our house) as best we can. Bottom line- there are no restrictions. My favorite was when we first arrived home from the hospital after Robby's diagnosis, our friends from church who also have a type 1 diabetic son brought us cookies...twice. She told me it was because no one will ever bring us treats again!

• 3. Insulin is not a cure, it is a life sustaining treatment. There currently is no cure for diabetes. Insulin is Robby's life-saving drug. He needs it to survive, and yet it is that same life-saving drug that could kill him. Yeah, sounds awful, but I'm not just saying that to be dramatic. Too much insulin could deprive his brain of necessary glycogen. It's what makes this delicate game of balancing insulin, carbs, physical activity (and any number of other factors) such a stressful task. And on that note, I wish people understood how difficult that task is. I know people mean well when they say, "Oh, so he just needs a few doses of insulin before or after meals to keep him going, right?" I wish it were only that simple. Humor me and check out Meri's post about a typical lunch situation with one of her boys. That is every meal and snack at our house. And even then, you can do all the math right, have the pump programmed perfectly and things can still turn out a little (or a lot) "off." This about killed John at first. His mathematical brain wanted inputs and outputs to match. At first it made my brain hurt and I cried a lot, but I think we're starting to get used to it a little.

• 4. There is no such thing as "leveling out" or "becoming more stable." I get questions all the time now that we are six moths out from diagnosis if we've seen Robby's blood sugars finally start to level out. Ahhhh! I wish! But there is no such thing as leveling out in the world of type 1. Highs and lows are just a part of the game. Robby could eat the same three meals EVERY day, be given the same amount of insulin every day and have completely different outcomes EVERY day. The number of variables that can effect blood sugar is mind boggling- if he eats something high fat, if he eats something with high glycemic index, if he's super active, if he's sick, if he's sad or excited, anxious or calm, if the barometric pressure drops (not even kidding), if he gets hurt, if he's having a growth spurt, if I bolus too late, if I accidentally stack the insulin doses...and the list goes on and on. It makes me marvel at what a miracle the human body is. There are a few things that we have definitely gotten a better hold of since he was first diagnosed- his breakfast spike is well under control, his basal rates of insulin are fine tuned, his carb to insulin ratios are better, and our carb counting/guessing skills are much more refined. These things have helped, but we still have crazy days with unexplained fly away highs (in the 400's) and drop through the floor lows (in the 40's) and we pretty much always will.

• 5. Managing type 1 diabetes is a full time job. All day. All night. I think that night time care is one of the hardest aspects of being a parent of a child with type 1. You'd think that once his little body is resting and not eating, it would be most stable. It turns out that growth hormones and other crazy stuff happens while we sleep. The liver kicks out glucose, food can be slow to digest, his pancreas can rally and spew out small amounts insulin, increased physical activity during the day can have a delayed response, and on and on. Thankfully, we have the CGM that helps us so that we don't have to poke him every 2-4 hours at night, but it is an electronic device and it does have it's fair share of glitches. We still get up at least once for a poke (BG check) and to make sure the CGM hasn't pooped out on us. In the last 6 months, we have only had 3 "perfect nights"- one in which he didn't need either food (yes, he can down an entire yogurt in his sleep) nor insulin to correct a trend. We've had LOTS of close to perfect nights that required minor adjustments (a few bites of yogurt or a small dose of insulin), and we've also had our fair share of sleepless nights where nothing goes right and one of us ends up sleeping on the floor in Robby's bedroom. It's tough. No way around it. It's just tough.

• 6. Robby is a normal kid and can do/be anything he wants to be. When you look at Robby you probably see a normal, active (and darling) two year old. If you look closely you'll see his battered little fingers and toes, his little fanny pack that holds his CGM receiver, and a slight bump on his leg or bum where he wears his insulin pod, but I hope that those aren't the first things you notice. John and I work like frantic, crazy mad-people on the sidelines of his life to ensure that he has a normal, happy childhood. Sometimes my head hurts from trying to figure out how soon to pre-bolus and dual-wave his pump for a slice of pizza, but if that means he gets to have pizza at the pizza party like all the other kids, then that's how it has to be. As long as he's careful and vigilant, he can do and be anything he wants to be (I'll have another post on this topic soon).

There you have it. Six things I wanted you to know about diabetes- consider yourself educated and enlightened.

Can you believe it???

National Adoption Day, November 20th

World Diabetes Day, November 14th

November just so happens to be National Adoption Month AND...wait for it, wait for it...National Diabetes Awareness Month! Bet you didn't see that one coming, huh? Well, it's absolutely true.

And so with that in mind, I'd like to dedicate a few posts this month to these two causes that are near and dear to my heart. I have a passion and a love for adoption. I want people to understand the joy and blessings that adoption has brought to my life. Can you imagine our family without Tyler? I also have a deep desire to share more understanding and education about diabetes. I want people to understand Robby's special needs and give more compassion to other families in our same situation.

Funny that the experiences that I have had with each of these have had the greatest impact on my life over the last several years. And even more interesting is that I truly believe that our experiences with infertility, adoption, and diabetes are ironically intertwined. I see now so clearly that God had a plan for our family. He always has. He knew what would be best for our family well before I ever figured it out.

I look back to our years of struggling with infertility. How badly I wanted a baby. That desire nearly consumed my every thought and emotion. I prayed more fervently for that one desire than I ever had before. But the Lord knew two things that I didn't- first, he knew Tyler needed to come to our family. How thankful I am that he lovingly and tenderly lead us down the sacred path of adoption. We needed Tyler and Tyler needed us. The second thing that He understood was that if Robby had joined our family with his special needs at that time, we would have struggled far beyond what we were capable of handling.

At that time (when we first tried to start our family), John was working on his master's degree and I had just graduated. If Robby had been born then, we would be six or seven years into his diagnosis. We would have been on BYU student insurance and neither his particular type of insulin pump nor his continuous glucose monitor were on the market. And even if they were, there is no way our student insurance would have approved either. That might not sound like a big deal, but it is. Diabetes is expensive. We would have struggled financially, emotionally, and physically (because lets face it, without the CGM, we'd be up every 2-3 hours at night checking that kid). I know that these struggles would have put a heavy strain on our delicate, new marriage. I believe with a surety that the Lord reserved Robby's arrival to our family for a time when we were in a better position to handle it. I wish I could somehow go back in time and tell myself during my darkest hours of infertility that the Lord knew of our circumstances. He knew of our little family. He has a plan, and loves us enough to give us trials that will bless us in the end, even if it means we have to experience heartache and disappointment. I am grateful that the Lord orchestrated a plan that would allow our sweet Tyler to join our family and would allow Robby to join our family at a time when we could provide for him the best possible care. God lives and loves us and blesses us through our trials.

52 seems to be the number of the week

After I posted my last post with the story about Robby going low at the pool, I read this post on a fellow diabetes mom's blog- love you, Meri!!! My heart ached to read a similar story about a kid who should just be allowed to be a kid and a mom who just wants to provide that opportunity for her son...and of course, both our stories involve a "crap on a stick" kind of number like 52.

Blogging is fantastic because it opens up a world of communities that can offer support and compassion for shared experiences. Meri (who happens to have 3 diabetic sons, by the way) has networked dozens of "D-moms." Reading their stories of highs and lows and of stressful, sleepless nights helps me know that someone else out there "gets it." When I receive an email or comment from one of them, the compassion and empathy is deep. No one can really know what it's like to be in this situation, unless they're living it themselves. Plus, I can't tell you how lucky I am to ask for advice on basal rates, pump sites, breakfast spikes, and diabetes supplies and get real life, tried and true responses! I experienced this same kind of support from the adoption community, and I still enjoy reaching out to fellow adoptive moms and families in that sphere as well. Blessings come in all shapes and sizes...or even in the form of html.

...oh, and I'm pretty sure that the last three lines of Meri's post are words I utter in prayer almost daily. Thanks, Meri.

One last trip to the pool!

Our neighborhood pool finally closed last week. I was glad that on one of our last visits to the pool, we found it was completely empty- just like the good old days. When we first moved in, we frequently had the pool all to ourselves. This was a fun afternoon with my boys.

I have to remind myself that Tyler is a big boy now and doesn't need me following him around the pool. He loves to jump off the ledge and swim in the deep parts.

Robby, on the other hand, is completely content playing with toys in the little pool or on the stairs of the big pool. He keeps quite busy filling up these two buckets.

Here are a couple vids of the kids at the pool. I couldn't get Tyler to actually swim instead of dog paddle for the camera...oh well. And he still yells, "Candy Bar!" instead of "Cannon Ball!" Love it.

Robby has come up with his own variation of swimming. It's the cutest thing ever. He just scoots along the step of the kiddie pool.

And one last story that must be documented because in my book it's a pretty big deal. While we were at the pool, Robby was able to, in his own way, communicate a low blood sugar. You see, as a parent of a diabetic, one of my jobs is to teach Robby to recognize and communicate if he's feeling high or low, but especially low due to the dangerous nature of a low blood sugar. Some of the signs or symptoms of a low blood sugar are fatigue, sleepiness, hunger, confusion, and shakiness. The brain is highly glycemic, but doesn't store any glycogen, so when blood sugars drop low, it's essential to treat it quickly. Many kids typically feel it in their weak legs. They'll notice that they can't walk or feel like they just want to sit. Robby's had a few lows that made him irritable and shaky, but the other symptoms are hard to read.

On this particular trip to the pool, we were just about to leave when I remembered I didn't have the diabetes bag (a bag full of the essentials- needles, test strips, BG meter, and lots of sugar snacks to treat an emergency low). For a split second I thought, "Nah, we won't need that today. We'll only be gone for 45 minutes and we literally live a 30 second walk from the pool. If anything goes wrong, we'll just run home."

Uh. Hello? No. That's when the voices in my head reminded me that I have a child with diabetes and we don't go ANYWHERE without that bag, especially not the pool. Miracle #1.

When we got to the pool, I checked Robby's continuous glucose monitor one last time. The monitor isn't waterproof, so we fly blind when we're at the pool. It read that he was at 138 (great number), but was indicating he was in the middle of a slow, gentle drop. So for good measure, I game him half a small box of raisins to be on the safe side.

30 minutes later, Robby said, "I unt nack" (I want snack). This was actually the first time I had ever heard him use these new words. At first I just brushed it off, and thought it was kind of cute. But then he said it like three more times. The thought came that maybe he was low. But I discounted that because he was acting completely normal, and I had just given him a little snack before we got in the water. But then those little voices returned: check his blood sugar now. Miracle #2

I reluctantly pulled him out of the pool and did a quick poke and the meter read...

52

52!?! What??? I ran and got the bag, glad that I had brought it and wishing it had a fast acting sugar like a juice box (why it didn't have a juice box, I don't know). I gave him an entire box of raisins, which he gladly downed and several more yogos for good measure (and then of course gave the rest to a patiently waiting big brother...he knows Robby gets a treat first in cases like this. Good little boy). Immediately Robby was begging to get back in the pool. Uhhh...sorry buddy, they'll be no passing out in the pool today. We gave him a few minutes, re-checked his blood sugar, and then got back in the pool. I hate to think of what that mad dash home would have been like if I had left the bag.

I was grateful for the little voices that whisper in my ear and help me know what my little boy needs and the instant at which he needs them. I rely on that gift and pray for it daily. I am grateful that Robby is starting to recognize what his body needs, and I am confident that as he grows, the spirit will be a strong, guiding influence in his life.

...and one other thing is for sure...when Robby wants a snack, Robby gets a snack.

In case you were wondering...

How many carbs are in 7 grapes?

In reference to the previous post, someone asked me the other day, "so how many carbs are in 7 grapes and how much insulin does it take to cover 7 grapes?"

Here's your answer:

Grapes are approximately 1 gram of carbs each. Having used my kitchen scale to weigh a small handful of grapes on more than one occasion, I've learned that 1 grape=1 carb, or close enough. In carb counting, we've gotten really good at guessing.

So, in the morning hours from 7:00am-9:30am when he is highly glycemic sensitive, it would take quite a bit more insulin to cover 7 grapes. During these hours, one unit of insulin (or his IC...insulin to carb ration) is 1 unit of insulin for every 50 carbs, so it would take about .33 units of insulin.

in the afternoon from about 9:30-3:00, it would take only about .15 units of insulin

and from 3:00pm- 10:00pm, it would take .24 units of insulin to cover 7 grapes.

...unless his BG is already above 200 when he eats the grapes, then you'd have to factor in his correction ratio. Yep. One more equation to mess with, one more thing to consider, and yes, it is also a different ratio at different times of the day (and night).

This is my life, people, this is my life.

(and I have to admit, I am very grateful that his insulin pump does all the math for me. Before we got on the pump those first few weeks of figuring this out with my own little brain about killed me).

Tour de Cure

Saturday was the big day. I rode in the American Diabetics Association's Tour de Cure. It was a great experience and I want to thank those of you who supported our family in this cause. I was able to raise $200.00- exceeding my goal of $150. Fantastic! It is my hope and dream that a cure will found during Robby's lifetime. Thanks again for your support in this dream!

A few weeks ago John surprised me with a new jersey and matching shorts from the JDRF (Juvenile Diabetes Research Foundation). Along with the new get up, he gave me a sweet letter (one I will cherish forever) in which he told me how proud he was of me for championing my own cause, and hoped that the outfit would help me continue to do so. He also explained that it was high time I had matching shorts and jersey- something that sets a serious cyclist apart from a recreational rider- this is a major compliment coming from John, and one I was delighted to receive.

As part of my goal to raise awareness for the disease, I made this sign for the back of my jersey. I got a LOT of compliments, and several people thanked me for reminding them of why they were out pedaling their legs off in the heat that day. We also made shirts for John and Tyler that looked like this:

And for Robby, we made a shirt that said "Future Red Rider." Riders who participate in the race are given a special jersey that identifies them as "Red Riders."

And all three shirts looked like this on the back:

This year the event began at the Texas Motor Speedway, which I have to say was quite awesome! We parked on the infield and the ride started with one lap around the race track (hallowed ground for many NASCAR fans). Very cool! That place is WAY bigger than I ever imagined and the turns on the raceway are banked WAY steeper than I ever imagined as well.

The ride was excellent- scenic and well supported. I survived and finished with a respectable time. I even took a turn at the front of a pace line for the first time ever (riding for years with John allowed me the luxury of never having to pull a pace line).

65 miles later, I hit the finish line. I looked around and my cheering section was nowhere to be found. I gave a quick call to John and he told me they were in the parking lot making their way to the finish area for the second time that day.

Oh the irony of it all- diabetes had spoiled the day.

John had arrived about 1 hour prior to my finish time since he didn't want to miss me coming in. Bless his heart, he packed the boys, the chairs, and drinks all into the 100 degree weather.

As they got settled into their chairs and started their serious business of cheering for the finishers, John checked Robby's BG only to discover he was at 460. To put this into perspective- Robby's BG should be between 90 and 200 (normal is between 80-120). He had just changed the CGM that morning and it was still calibrating, which is why he was unaware of the problem until it got bad. After making a quick inspection of all of Robby's "hardware," John discovered that Robby's insulin pump had fallen out. He packed everyone back up and headed home (luckily we only live about 15 minutes from the speedway). Given that it was 100 degrees and that Robby's BG was above 460, he was crazy thirsty and drinking a ton, at which point he accidentally spilled an entire bottle of water all over himself. As John began the process of changing Robby's clothes (that's why he's not wearing his cute shirt we made him in some of the pictures), he noticed that the second CGM had come off before it had even had time to be calibrated.
Oh my poor, sweet husband. He changed the wet clothes, changed the pod, and placed a new CGM and booked it back to the Speedway.

...and that my friends is why we ride for a cure.

(above is a picture taken after all the trauma had ensued and below is a picture of the boys checking out a few of the cool race cars before all the trauma ensued...aren't they adorable?).

Riding for a Cure

Okay, so here's the deal- there are plenty of reasons why a cure for Type 1 Diabetes is needed:
diabetes is expensive

diabetes hurts

diabetes can cause numerous long-term health problems

But for me, there is really only one reason why I think we need a cure for Diabetes:

Over the years, cycling has gotten me through some pretty rough times. When we were in the middle of our infertility battle, I turned to biking for an escape. Thanks to a super supportive husband, I've been able to do the same with this particular challenge in our lives. I have loved getting out on my bike and pedaling away my stress, anxiety, and heartache. It's therapeutic.

In researching a few races and rallies, I was reminded that the American Diabetics Association organizes the Tour de Cure- a series of fundraising cycling events. There happens to be one held in Fort Worth on July 24th. The money raised from each event goes directly toward supporting the ADA's mission:

To prevent and cure diabetes and to improve the lievs of all people affected by diabetes.

You bet I'm in.

I love riding. I love riding for a good cause even more...and this time it's personal. I ride for Robby. when I think of the challenges he will face as he grows up with this disease, it breaks my heart. I'm trying to do everything in my power to improve his life...whether that means checking his blood sugar a million times a day, waking in the middle of the night to give him juice, giving insulin, counting carbs, or riding 100k to raise money and awareness...I'll do it.

Here's where I need your help. My fundraising goal is $150.00. I'd love your support in this effort. Donations can be made directly to my goal account on the ADA website, and can be made for as little as $5.00.

To make a donation online, simply go to:

http://www.tour.diabetes.org/

Click on "donate"

Then enter my first name: Carrie

and last name : Carson

If you have any questions or would like to make a donation directly to me for submission, please let me know. Thanks for your continued love and support. Robby is a lucky little boy to have so many people who care about him.

Introducing...

the OmniPod and Dexcom 7

In an attempt to help us manage Robby's diabetes better, we have added two new devices to our tool box. Really though, I feel like all we've added is extra stress, but we're hoping that with a little time and experience, these tools will help us out.

On Tuesday we received our Dexcom 7, a continuous glucose monitor (CGM). It is a device that does just that- it continuously monitors Robby's glucose levels. It's a little bit tricky getting used to how best to analyze the data you receive from it, it's not extremely accurate, and it does not alleviate the need to still do finger pokes for actual blood glucose levels. Having said that, I still ADORE this thing. We did a seven day trial, and afterward told the reps we wanted them to overnight our own device. It's that good, people. In fact, when it arrived, I almost hugged the UPS man.

This is what the receiver looks like. Robby has to be within 5-10 feet or so or it will not pick up the signal. This means that most of the time, this little monitor is attached to his belt or pants. That part I hate, but he's getting used to it, and it's well worth the peace of mind that it gives me.

And this is the sensor and transmitter that read the glucose levels in the interstitial fluids under his skin. It attaches to his leg with adhesive and has a small probe (about the size of three hairs) that inserts under the skin and then send the info to the handheld receiver device.

The reason why we love this thing so much is not because it will tell us exactly where his BG is at any given moment (although, it does do a good job of giving a ballpark number of where he's at), but because it does a number of other things. It will show trends and will alert if the trend is falling or rising and will indicate at what rate he is rising or falling (so if I know he's at 120 and falling at a fast rate, I know I need to get some sugar in him within the next 10 minutes). It will graph all of the data points and show them on the monitor (invaluable for analyzing what's going on with his BG as we try to fine tune his pump), and best of all, it will alert if Robby reaches a pre-set high and a preset low. Robby's BG at night is incredibly unstable. We have had to check him almost every other hour to make sure he doesn't drop low. We sleep so much better knowing that this little device will sound an alarm if he starts to drop and it will alarm if he ever reaches a low. We love the peace of mind that this thing has given us. Like I say, it's not perfect, and it comes with it's own set of hassles and problems, but we feel overall that it is well worth it.

The second device we added to our arsenal against diabetes this week is the OmniPod.

Ta-da!

This little thing is Robby's insulin pump. I know, not exactly what you imagine when you think of insulin pumps. We chose this thing for a number of reasons; it's small, it's waterproof and disposable (the pod is replaced every 2-3 days), he doesn't have to carry around the pump/monitor device, and most of all, it doesn't have any tubing. He's 18 months...can you imagine what he would do with tubing attached to his body!?!

Here's how it works:

I fill this little pod with insulin, attach it to his leg with the adhesive sticker, and that's it (almost). Everything else is done remotely. I set the site with the press of a button- meaning that to get the little cannula that inserts under the skin and remains there in order to deliver the insulin, all I have to do is push a button. I also deliver insulin with the press of a button as well...no more shots!!!

I think in another month or two, we'll really like this thing, but for now, the learning curve is STEEP. This thing is simple to use, but getting his insulin ratios dialed in has been nothing less than a nightmare. He swings wildly all day and we are still in the trenches trying to figure out what we need to change in order to level him off. There are three insulin factors- his basil insulin, his carb ratio insulin, and his correction insulin. They are intertwined so intricately that getting the numbers right on all three is a daunting task right now. It's a good thing I'm married to an engineer.

We've been told that, for a number of reasons, most people wait a year or two before getting into a pump, but one of those reasons is because it has a pretty intense learning curve and it's almost like starting over. So we've been thrown into the world of diabetes and then buried in the world of pumping.

I'm hoping that things get a little less intense. The other day, after a particularly difficult day, John very sympathetically said to me, "I'm struggling to stay on top of all of this. I can only imagine how difficult this is for you." This is coming from a man who is two semesters away from a PhD in engineering!!! The math, the data analysis, and the problem solving skills are all way above my head right now, but I'm trying. There are times when my brain literally hurts and my head is throbbing and I look like this:
So if you ever see me and I have a blank stare on my face with my brow furrowed, please don't talk to me...I'm thinking.

Like I say, our hope is that these devices will help us better manage Robby's diabetes and help give him a more normal childhood. For now, it's difficult. Learning both devices has been a challenge, and I'm sometimes frustrated with how many things beep at me and need my attention at the same time, but let's all pray we get the hang of it soon.

Here is one last picture of our bionic baby. It does break my heart to see him all hooked up like this, but at least he's alive! And besides, he barely notices them. He hates when we put them on, but once they are on, he never notices. And it is pretty cute when you ask, "where's your nose?" and he points to his nose, "where's your mouth?" and he points to his mouth, "where's your pod?" and he points to his pod.

And who knows, maybe one day he'll grow up and be as cool as Nick Jonas from the Jonas Brothers or Joe Eldredge, a pro cyclist who rides for Team Type 1 (both totally cool OmniPod users)...I think Robby is in good company.