I promise to catch up... one of these days... here's a start.

I promise I will start blogging about this journey soon. It's been so crazy lately that I just haven't had time to sit and type. I do want to share a moment from last night. First off, I don't want anyone to be fooled that this transition hasn’t had its challenges.  Like most everyone I tend to show the “all rainbows and butterflies” side of the story on social media. The fact is… ADA is only 17 weeks old and still learning. She’s doing amazing and has such incredible potential and is/(will be) a fantastic service dog. As she continues to “hone in” on her skills and we (humans and ADA) begin to understand each other a little better “alerts” will become clearer to us (humans).

With that said… Last night in typical fashion our house got CRAZY. The kids were wild. ADA was wild. Jeff and I were reaching our limits of sanity. I thought ADA was feeding off the kids. She was “bouncy” and “running” and refused to settle. Jeff even came in and said… “She’s like Tigger… she won’t stop jumping.” I took her out- I tried to walk her- eventually she calmed down… and laid down. At the beginning of the “crazy” I had glanced over at the MySentry… and saw he was 190. I remember thinking… okay… he’s fine.

Now… had I done – what I was supposed to do- I would have realized that ADA was not just “acting out” but actually trying to “alert.” When I finally realized…. almost 35 min later (which happened to be when I glanced over at the MySentry and saw 90 two arrows down) I checked him and he was 55.

I can’t explain it. I don’t fully understand the science behind it… and I know we’re in the process of “perfecting” it. But I can say… ADA is pretty amazing… and we are so thankful to have her in our family and taking care of Saul.

A Dog For Saul Website

Ch-ch-ch-ch-Changes

They're not always bad.

 

(changes)

 

They're difficult.

 

They're necessary.

 

 

They're inevitable.

 

(sometimes)

 

 

I could attempt to explain what led us to enduring a 7.5 hour apt at Cincinnati Children’s Hospital last Friday (one that involved a series of thorough hour long + appointments with a Social Worker, Pediatric Endocrinologist, Nurse/Diabetes Educator and Dietician) oh… and agreeing that the 1.5 hour or so drive both ways… was “totally no big deal” ............... but instead… I’ll just say… my devastation over our Ped Endo at UK leaving coupled with this brought on the change.

 

 

And it was great.

And it was worth it.

 

 

Having been fully informed about the length of our initial apt, Jeff and I decided to drive up on Thursday so we could spend the day with Saul at the Aquarium and hang out in Cincinnati. We thought the alone time with Saul might be nice.. and we were right. We had a wonderful "mini-vacation." Because it’s possibly the only one I’ll get this Summer – I took full advantage of all hotel amenities and was living it up at Embassy Suites.

Cincinnati Children’s is amazing. I will try not to compare our experiences with UK Children’s (mainly because I have friends and contacts at UK) but it’s hard not too… The Pediatric Endocrinology Dept/Clinic at Cin is so much bigger and better staffed (granted… bigger is NOT always better) so quality of care will be determined as we progress through this journey. The striking difference however, is the approach to treatment. There is something to be said about the unique (and it is, believe me, “different” than what we’ve been accustomed too) method that is used.

 

From the beginning of the process I was told the Clinic institutes a 4 team approach. You are followed by a Pediatric Endocrinologist (there are a number of them-  and the Clinic encourages you to find someone who "clicks" and is the "right fit" for you). Many of Dr's specialize in a specific Diabetes/Endocrinology “area” so you have options in terms of who you see. Because this was our “initial visit” they automatically scheduled Saul with someone - and in the end- we were very pleased- so we agreed to follow up with her for our next apt.

 

Other than the wait (which I had mentally and emotionally prepared for) I was most concerned about meeting the Dr. I loved Saul’s former Ped Endo and had very high expectations… I’m happy to say they were exceeded at this first visit. Our Dr. was so thorough- so detailed and so great at communicating and explaining that Jeff and I seriously walked away saying… “Wow. That was awesome.” She also had good bed-side manner – suggested we take a half an hour lunch break between appointments and even walked us to the hospital cafeteria. Needless to say… I felt a huge burden lifted.

 

We – literally WE (the Dr. and I – Jeff was wrangling Saul during most apt’s…lol) sat and reviewed Saul’s data which they uploaded from Carelink. WE sat and discussed his A1C which upon finding out was an 8.4 nearly caused me to melt down. My memory is fuzzy- but I’m pretty sure she had to scrape me off the floor and hold me up for a good minute and a half… I was prepared for a “higher” one… but NOT prepared for an “above 8.”

 

 

The Dr. on the other hand was totally okay with it- and said it was great. She showed me the print off where 8.5 and below is the “target.” She said, “I understand you are shooting for perfection- but you have to realize you are doing a great job and you won’t always get perfect A1C’s.”

 

 

We both agreed that our first and most important “target goal” was to start “smoothing out” those peaks and plummets in blood sugar levels. Saul’s been on quite the roller coaster for the past month or so- and appears to be extremely sensitive to insulin corrections – so WE made a number of adjustments to bolusing and left his basal rates alone for the time being.

 

She also ordered blood work to test for Celiac and a few other “type 1 related” diseases and issues. She also talked about the varying types of diabetes “within Type 1” and wants to try and find out “exactly what we’re dealing with, to know how to go about a treatment plan for managing his care.”

 

 

*Because... side note (not all Type 1 Diabetics are the same) I have to keep telling myself this over and over and over and over when I listen to someone say... "Well so and so's kid... has so much better control... so and so's kid NEVER has lows... so and so's kid never had to deal with any of this stuff."

*Because... (second side note) I take it all so personally- as a reflection of my performance as a Mom and a Type 1 caregiver... I know... I need to get over it. Already.

 

Jeff and I were equally impressed with the other specialists we saw during our visit. I felt like I easily bonded with both the DE and dietician (who I think I cracked up a good 65% of the time). The Clinic encourages you (like with your Dr) to find “someone you click with” in terms of the other team members and I will def. follow up with them next time.

 

In general- most of what was reviewed and discussed – I already knew- but am happy to have walked away with a way more detailed “step by step” instruction guide on “sick day management” and treating ketones.

 

Oh... and we also now treat at 80 as opposed to 70.

 

All 4 specialists encouraged communication and all 4 took pride in the fact the Clinic offers so much support through communication (because of the number of staff and resources).

 

They have a 24 phone line.

They return same day calls.

Nurses rotate taking calls all day.

 

I was told twice by the D.E. “You have a Type 1 two year old. You are a priority. If you need to speak to someone regarding a high or low episode you tell them… I have a two year old. You will be made a priority.”

 

I was also told by the D.E. “If you ever- talk to someone on the phone who comes off as rude you ask to speak to their direct supervisor. You are dealing with a Children’s Hospital. You have a child with an illness. You deserve excellent care.”

 

So. At the moment. For right now. Despite the drive. I’m sold.

 

Oh… and they have a pretty awesome Fire truck in the waiting room which kept Saul entertained for hours… literally. So I think he's sold as well.

I'll leave you with a few documented photos of our adventure!

 

Excited for a trip to the Aquarium!

 

 

Entertained everyone by his constant yelling of "Yee haw Froggy"

Mesmorized

 

 

Always my favorite part of visiting the Aquarium

 

Wanted to "get closer and closer and closer"

LOVED the sharks- his favorite

 

 

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Penguin watching

Coulda played with this thing for hours

Ackward. Eating tuna while at the aquarium?

We begged and pleaded... just come lay down and take a nap... he's saying... "let's go on an adventure!"

Swim time

This kid LOVES swimming and kept yelling "I'm a swim-teamer"

Saul and I had the entire pool to ourselves... and it was fabulous!

Pumped

Annnnddd.... then the next day... lol. He was actually in a great mood all day... just making faces here!

LOVED wearing the backpack... which was pretty adorable

 

 

He kept checking himself out in the reflection saying "I just like Dora"

 

 

He's two- and he knows all the routine... lol.. he seriously is a pro.

 

E2 Will always be easy to remember

This might just be my favorite pic of him from the whole trip

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He was so so so so so so good for HOURS... and HOURS as we met with all the different folks. I planned ahead and got 5 little "dollar store" gifts for him to un wrap through out the day... to try and keep him busy and "good" LOL... which he totally was

Ended the day with blood work at 4:15- He's just like EH and has to "watch" the entire process

Still smiling... still wearing that backpack... enjoying a "treat" for being so good after 7 and a half hours!

This was 2 minutes after I buckled him in - wiped - out-

Can only mean one thing...

Sometimes I wish I could write and post stuff as "the real me." 

I'm always censoring myself... I know some of my audience is younger and quite a few more would be totally offended by things I might say. It's the reason I have such a lame title to this post... I've got a much better one in my head... But I'll keep it there for now and spare you. 

I'm blogging from my iPhone at 2:15 am which can only mean one thing... 

No I'm not up sneak-eating frozen waffles. 

I have a serious love-hate relationship with Saul's Medtronic CGM. At this point in the game I would never "not" have him wear it (despite the god-awful process of insertion) and if anyone ever asks me... Should I wear one? Does it work? Is it useful? Worth it? I'm quick to answer with "Yeses."  

It is however, just a device. A technological tool that while useful- sometimes fails. And when it does fail... when it lets me down, when it seems like such a hassle, like a waste of time and effort and energy... I have to stop and remind myself... It's all you've got and its better than nothing. 

I woke up to the alarm of "FALL RATE."  I quickly check (after a bad low of 47 last night -can't take any chances). 

CGM reading... 127 (two arrows down). I run and grab his meter... check him... 

He's 258 (high blood sugar). 

Okay, so sure I'm thankful. I'm glad I'm  not up dealing with a low. I know at least I'll go back to sleep after posting this- had his CGM been accurate and had he truly been crashing... It would have been time for a pot of coffee and bad late night re-runs. 

Technology is awesome.... until it fails you. 

 

Sure there are folks out there managing diabetes care with minimal resources- the old "teacher chalk board and chalk method." It's what they know- what works for them- I get it. 

For now- till we get another tool in our tool box- I'll deal with the frustrations and limitations of today's modern technology. 

Anxiously awaiting "the call"

I spent the morning watching videos of DAD's (Diabetic Alert Dogs) in action- alerting, retrieving and dialing 911.

 

I won't lie... I'm nervous. It's gonna be a lot of work (and we still have so much money left to fundraise) but in the end I know it will be so so worth it. I will forever be indebted to all the folks... friends, friends from the past, family members, kind-hearted people I don't even know, animal lovers.... all helping us... helping Saul to live a more "normal" life. A life where Diabetes doesn't stop him from doing all the "stuff" other kids do... A life where he feels additional support, knowing he will always have someone watching him and alerting him. There are so many video's I'd love to post... so many stories of hope and miracles that have occurred through the use of DAD's.

 

I'll leave you with this one.

Kryptonite

You were “Super Robot Guy” again this evening (you have been for days). I guess the transformation occurred while Sis and I were at Gymnastics. You’re the only Super hero I know that stops mid-mission to give kisses. 

Tonight’s been rough. I guess it started once you shed your “Super Robot Guy” attire. If I had super powers I’d protect you from what just happened. I’d fight that stupid Lex- Luther- pancreas of yours and show him whose boss. He’s done nothing but plot your demise since he quit functioning over a year ago.

Everyone is hard to love sometimes… even super heroes. I had to remind myself of this tonight when the incident occurred… that it’s not really you… you’re not really in control… it’s the diabetes… and I’m sorry I couldn’t stop it from happening. I’m sorry your bloodsugars were so high that it made you sick. I’m sorry that during hyperglycemic episodes you are altered from a strong, kind-hearted hero to an angry, wrathful fit-throwing villain.

I know you won’t remember screaming. You will forget yelling at Daddy telling him to “just leave” “just go away.” I won’t make you feel bad for hitting and swatting me… for shouting “NO MOMMY… NO TOUCH…NO TOUCH ME… NO KISS ME… NO TOUCH ME” and shattering my heart into a million pieces because other than giving you insulin it’s my only means of comforting you. “

When you wake up in a few hours- you’ll ask if you can be “Super Robot Guy” and you know of course, I’ll say yes. You’ll run around the house pretending to be “super strong” and “super tough.” We will play the game we play every single day - “Super Robot Guy” saves “Super Mommy”and when we do, I’ll try not to think about what happened… how I couldn’t save you from getting sick tonight… how I can’t always shield you from the highs and lows that seem to hit you from all angles outta nowhere and for no reason.

I’ll tie my cape a little tighter tomorrow… and maybe for a few hours I’ll pretend to fight criminals instead of diabetes. 

A little something I wrote for the ADA in March

Here is a little something-something I wrote for the American Diabetes Association last month.

Click here to access the newsletter.

A Day in the Life of Diabetes

Living with a type 1 diabetic can be challenging. Living with a type 1 toddler and managing their care 24/7 is a test on the limits of your sanity.

We spend our mornings untangling dinosaurs and trucks from insulin pump tubing. We find ourselves constantly cleaning covered CGM sites (I won't tell you in what), and then there's dealing with those seemingly random, unexplainable high BG readings that always leave us guessing—did your sister hide another pack of candy under the couch?

Saul was diagnosed on January 27, 2012. He was 15-months-old. His ability (or lack thereof) to communicate immediately became our first concern. Straight away we started signing "high," "low" and "okay" when doing BG checks which occurred at a rate of 15-20 times a day during the first two months after diagnosis.

1. We were newbies, nervous and maybe a little overcautious.
2. What else could we do? He could never tell us how he felt so we were constantly left wondering—typical tantrum or the result of a high blood sugar? Was that fall just normal gross motor development or the sign of a hypo? I kept telling folks, "If we can just get him talking, it will get easier. It's got to get easier."

A pump, a CGM and a year later we still worry about communication and now face a number of new obstacles – potty-training, sporadic, non-stop picky eating habits and the tantrums. Oh, the tantrums which have only increased in number and display. You know it's the typical two-year-old stuff that all toddlers tackle—just with type 1 tossed in to the mix.

Friends ask me, "But what's it like?"

Much like the nature of the disease, my response is ever changing. Most days however I can see the big picture of life with a chronic illness.

"It's like running a marathon you know will last a lifetime and you're carrying the runner right now. You know that soon you'll have to set them down and let them run on their own even though you'd rather carry them all the way."

Counting every carb in every bite of food that enters his mouth, calculating doses of insulin and giving injections, waking up 3 and 4 times in the middle of the night every night to check blood sugar levels… These things are easy in comparison to attempting to explain how type 1 diabetes effects a toddler and their loved ones. Some days, diabetes controls our family but some days it doesn't.

Being a caregiver to someone with diabetes is difficult, but we are thankful that with modern medicine, technology and education we are capable of caring for, managing and treating an unpredictable/crazy/chronic illness in a typical/unpredictable/crazy two-year-old toddler.

Sure, Saul will look back and wonder why he wore overalls the first two years of his life—only way we can keep him from ripping off the CGM site on his stomach—and I have no doubt he'll ask why in the world I took so many pictures of him with skittle juice and cake gel on his face.
But ultimately I hope he marvels at our family's attempts to normalize this disease in daily routines and functions. I want him to be amazed at our efforts to educate others and be proud of our advocacy for him and others like him living with this chronic illness.

He needs to know and understand that no one in his family will rest until there's a cure. And until that day, we'll continue to use humor to cope.

Life as a person with diabetes will be the only life Saul knows. It will often be used to describe him but his family is not going to let it define him.

Courtney Grimes lives in Winchester KY with her husband Jeff, four-year-old daughter Harper and their two-year-old son with type 1 diabetes, Saul. She is currently on a leave of absence as a School Library Media Specialist to care for Saul. She blogs about living with a type 1 toddler, as well as a variety of other family antics, at www.myddays.blogspot.com She loves connecting with others with type 1 and type 1 caregivers on Instagram, Facebook, Pinterest and Twitter.

Adventures in Babysitting

“But I SWEAR…. I’m GREAT with KIDS! They love me… kids LOVE me.”

 

I had this dream the other night where I was sitting in an interview and I found myself passionately arguing the above phrase to folks who appeared to be my apparent (and what I considered to be *in a desperately hopeful/please God give me this job/It’s what I was destined to do/I need money… please… the money) future employers.

Sure… I woke up and immediately started dissecting.

*Is it a sign?

*Am I re-defining myself?

*Missing my kiddos at school?

*Am I having single-income nightmares?

 

Flash forward to this morning.

You know… a typical morning filled with this.

 

And this.

 

Wonderful moments of learning, growth & development that I get to witness in not just my child- but another as well… doubly blessed.

And then.

 

I go to the bathroom.

 

For 2 seconds.

 

Make that 3… cause I stupidly decided to “tidy up” (aka hang up a towel).

 

I hear Saul… “Uh-oh Mommy…. Uh-oh.”

 

I open the door and find that Saul is now sporting (a failed mind you) purple paint goatee.

 

I walk into the kitchen and find Trip wedged between the table and chair helping himself to a bag of pretzels (oh… and also adorned in some warrior-like face paint) (and… now sporting some lovely dyed purple hair).

 

 I see this… which will no doubt cause a meltdown of epic proportions when discovered by Harper… and before you think… or say it… she will find out. She’s that kid.

 

I see this (though I’m sure you’ll agree with me that the spilled paint is small fries in comparison to the amount of dog hair on that slip cover- so yeah… maybe that was a good thing).

 

And best yet…

There’s my poor, sweet Daisy girl.

Head hung low, tail tucked… embarrassed to be associated with the culprits… clearly a victim in this case.

 

Me: “Boy’s… WHO DID IT?”

Trip: “Sauce.” (aka Saul)

Saul: in a quiet, sad tone “meeeeee…….”

Me: “Trip did you have any part in this?”

Trip: “I’s eattin Mommy… I’s eattin.”

Saul: “is meeee… Mommy… is meeeee”

 

Ah… if only we retained our innocence and ability to accept and admit fault throughout adulthood.

 

But really… I swear… I’m great with kids… really… I am…

A letter to you, pancreas

Sometimes I wonder what you’ve been doing in there. I assume you’ve just been floating around- hanging out- laying low. I continually speculate whether or not you’re dead?

Are you alive?   …     just a little bit?

Are you still working…     just a little bit?

They told me you might… you might occasionally work on and off before completely kicking the bucket -but really, we have no way of knowing for sure.

Every now and then, I think you’re holding on… and I wish you’d just let go.

 

I’d never tell anyone but you… secretly (mainly at night when I lie in bed) I plan and carry out elaborate funeral processions and eulogies (in my head) just for you. I imagine you there… cloaked in black somehow listening and acknowledging what I have to say.

I mourn your loss and the suffering your death has caused - Saul and our family - but mainly I exult in your passing… because finally… with it… we can officially move on.

The battle for control is over. You can now rest in peace knowing that your job will be performed… (not as good as you could have done, had you not gotten sick) but nonetheless, we (and soon Saul)  will carry out your functions … every minute of every day for the rest of his life.

A year later, a year wiser, a year of humility and humbleness under my belt, I can sincerely say “I forgive you.  It wasn’t your fault.”  You held on as long as you could. You got us to 15 months and according to what they tell me you were probably sick and dying during your entire existence so to even make it that far without assistance is pretty amazing and a testament to your perseverance.

You are an underappreciated organ. Your loss does not reflect a daily physical reminder- like a limb or a digit. You, unlike other internal organs, do not get the credit you deserve for keeping a body alive- not like the heart, or brain... yet without you one cannot survive.

You, a tiny, non-functioning pancreas- have shaped my life, my career, my outlook and my family more than any other “thing” (living or non) in this world… and this factor isn’t necessarily bad.  In fact, I often think… that maybe- you will be (what partly) makes Saul a unique, strong, amazing kid who will grow up to be an extraordinary adult who accomplishes, and achieves incredible things.

Yet… your passing doesn’t mean that I still don’t get angry or frustrated, that I don’t ask questions or demand answers, that I don’t wish there was some way we could have brought you back to life… saved you… lengthened the state of your health... prevented your ultimate demise.

 

 

In all variations of your memorial service (and believe me… I’ve thought of lots) – I close in the exact same way… I picture myself (with our family) standing alongside thousands of dollars’ worth of medical equipment and supplies (CGMS, Insulin Pumps, Tubing, Needles) and a very expensive life-saving diabetic alert dog… and I chuckle… because this is what it will take… all this… and more to do the job of an organ we all take for granted… an organ that none of us think much about… until  one day it just up and quits working. 

 

Just pics today

Yesterday we spent (nearly) the entire day outside. It was warm. It was muddy. It was awesome.

There's nothing better than good weather and great friends.