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…

oh yeah... that last post... that was nothing.

Just for fun... I'm gonna post these... and you can laugh (or cry) with me.

These are the "unopened" bills

$2,823.26 (if I added it right) lol.

I gotta laugh to keep from crying

I went through the Rite Aid drive through to pick up 3 RX’s for Saul - and to ask about ordering  test strips for our newly acquired meter. The girl who was checking me out was new (because I’m there every other week… I pretty much know everybody… and even if the tech’s don’t recognize me… they seem to “know Saul”).

All 4 kids were with me- and being pacified by Bubble Guppies, so I had the rare opportunity to actually “watch” everyone in the Pharmacy -scrambling to wait on folks – answering  phones and grabbing medications to hand out.  Any other day I’d be yelling at EH to put her gum back in her mouth or fumbling with buttons to turn up music for Saul… but- because I had my full attention on “people watching” I was able to witness the genuine look of sheer shock and terror as the tech rang up my bill.

Tech: “Oh. Oh. My. Um. It’s 656 dollars for your 3 scripts.”

Me: “Got it.”

Tech: “Huh? I’m so sorry.”

Me: “Oh it’s okay… I got this (hands over insurance credit-card thingy)… I’ve got insurance.”

Tech: “It’s like you didn’t even blink an eye. That really stressed me out.”

Me: “Ah… whataya gonna do? He’s gotta have insulin to live.”

She shook her head in agreement and sent the med’s my way.

I waved to a few folks who recognized me – who were working inside and mouthed “see ya in a few days!”

I chuckled as I pulled off and thought… I wish I’d gotten a picture of that ladies face to show Sebulsky.

 

 

Believe me… medical costs around here are no laughing matter. I feel like we’re up to our eyeballs in medical bills for Saul… and the funny thing is… they just keep on coming… cause we gotta keep on ordering … cause he’s gotta keep on using…  to keep on living.

I beg you... please read.

* Disclaimer- I am not a Dr. or a CDE... just a Type 1 mom with a Type 1 toddler.

When you have Type 1 you must constantly balance/manage/control your blood sugar levels. Your Endocrinologist gives you a "range" in which you must attempt to stay within. You (or someone) must take on this responsibility and perform the duties of a pancreas by controlling the amount of blood sugar in your body at all times. If you get out of range... blood sugars rise too high (hyperglycemia)- (consistently high blood sugars lead to long-term complications- damage to kidneys, eyes, heart, amputations) or if blood sugars drop too low (hypoglycemia) you will die.
 

Before I had a toddler with Type 1... and even in the hospital at diagnosis, I honestly thought... "ah... it's just diabetes." I know that so many of you out there think this as well... I'm ashamed to admit that I taught students (both sweet elementary babies and high school young adults) who were Type 1 and I never really gave much thought to how I would handle a hypoglycemic episode if it happened in class. I didn't think Type 1 was a big deal, because I didn’t know. Because I watched my Granddad live with Type 2 and thought that Type 1 and Type 2 were basically the same. Because I thought diabetes was about "sugar free foods" and "weight loss" about "finger sticks" and "insulin injections” not about having to save someone’s life in an emergency situation.


Saul has now had 3 “serious” hypoglycemic episodes. Because of the severity of the circumstances I feel the need to advocate and educate about hypoglycemia and what you do if you find yourself having to assist in a hypoglycemic episode.  


I can only speak for Saul- and how they have occurred thus far.


All of Saul’s “serious” hypos have taken place during “sleep.” 1- during his nap (you may recall that post- our first ambulance experience) and 2- during the wee hours of the morning (this post).

 
While Saul does wear a Continuous Glucose Monitor (a device with a cannula that stays in his skin and measures the amount of blood sugar in the interstitial fluid) the technology is not 100% accurate. The CGM is linked to his Insulin Pump (a device that is inserted – it has a steel needle which stays in place and provides both “long lasting insulin” (basal) as well as the insulin used to cover the carbohydrates he eats (bolus). The insulin pump must be operated by a human. Both the CGM and pump are just technological tools to help ease the difficulty in keeping a Type 1 “in range.” While I am appreciative and thankful for today’s medical advances and our family’s ability to acquire them…they are not fail proof… and they will not prevent death.

 
Managing Saul’s Type 1 is extremely difficult because of his age. His eating patterns, communication, growth, development, etc, etc, etc, only complicate controlling his blood sugar levels- therefore he is more prone to instability and at a greater risk for experiencing both hyper and hypoglycemia.

 
I will save hyperglycemia for a later post and focus efforts on hypos for this discussion.

 
There are numerous sites with hypoglycemic information and education out there. Here are two as starting points. 


Hypoglycemia Information
 
Hypoglycemia Information


The lowest hypo we have recorded for Saul has been a BG of 35.  Ironically he appeared “hypo-unaware” at the time. He was talking and playing and “acting” like normal Saul.  When he suddenly “fell down” I thought to myself “hmm… strange” and just happened to check him. His CGM read 110 at the time. We attempt to keep Saul between 100-200 (though he often runs higher). We “treat” at 70. So seeing a 110 on the MySentry (a large screen that shows CGM reading at all time) would “typically” be no cause for alarm.

 
During Saul’s severe hypo episodes (the 3 really bad ones) he exhibited the following symptoms.

• Heart palpitations/fast/pounding heart rate
• Sweating
• Acting aggressive (hitting, swatting)
• Convulsing
• Shaking/trembling
• Uncontrolled shouting/screaming  (it’s hard to describe this… but he did it both in terror “Stop” “Stop” and once it kind of went parallel with the aggression… or at least that’s how it seemed at the time)
• Dilated pupils
• Mental confusion/disoriented
• Seizures

 
Saul has never lost consciousness or gone into a coma.

 
We have not used glucagon (yet). Glucagon is a hormone secreted by the pancreas that raises blood glucose levels. Because a Type 1’s pancreas can no longer produce or secrete glucagon an injectable form is used in cases of severe hypoglycemia (when someone is unconscious). Glucagon should be carried at all times by Type 1 individuals. Saul’s glucagon is in a red case and must be mixed before injecting. We have been instructed by our Ped Endo to use glucagon if Saul has another terrible episode.

 
If you are ever with him (or any other Type 1) and you see hypoglycemic signs (again… Saul’s often hypo-unaware at this point so he cannot “tell you” how he feels you must watch for the symptoms and check his BG level)

 
You should follow these steps.

1.      Check BG with glucose meter.

2.      If 70 or below - treat the low with 15 grams of a fast acting carb (juice, skittles, cake gel, glucose gel or even table sugar if that’s all you’ve got).

3.      Wait 15 min and re-check BG level if still below 70, treat with another 15 carbs and re-check in 15 min.  

4.      If he is unable to swallow you can rub cake gel/glucose gel in his mouth

5.      If he’s unconscious you must administer glucagon.

Really- Saul’s hypos have been so bad we should have used glucagon… he choked and aspirated on juice during 2 of his hypos- which adds danger to an already dangerous situation. Also… skittles would be a really bad choice for treating a severe hypo.

 

We have been lucky so far to be able to get Saul out of his hypos fairly quickly. Obviously, preventing them is the ultimate goal- however, we’ve learned first- hand that even under the closest watch hypo’s can occur.

 

 I saw this on FB yesterday:

 "Type 1 diabetes is a continuous balancing act. Imagine trying to manually control your temperature or heart rate all day, every day. It must respond and change throughout the day, but not too high or too low or you die. That's exactly what people with Type 1 are doing with their blood sugar"

 

Type 1 is truly an on-going balancing act. It’s easy to forget that sometimes folks walking the tightrope might need a hand, or a net.

Which came first...

“I just want to pet you”

Not something you typically hear (or want too-  for that matter) from those in the medical profession… like… say… your child’s pediatric endocrinologist.

(I won’t lie… sometimes I wonder who’s crazier… I guess that’s why I like her so much).

That… and… well… she gives great hugs.  

I saw this shirt today on Pinterest.

 

It made me chuckle.

It’s no surprise to anyone who knows me- or who has lived with me, that I might just have a “touch” of anxiety. Accepting the position as Saul’s full-time pancreas has in no way helped this pre-existing condition. In fact, as you might have guessed it’s only worsened the situation.

It kinda all hit on Wednesday at our 3 month A1C checkup when the apt seemed to be more about me and the state of my mental health than Saul.

“You guys are doing everything right.”

-          “But the seizures… they were so… bad”

“He’s a typical type 1 toddler”

-          “But his numbers are all over the place”

“It’s really hard at this age… but you’re doing beautifully”

-          “But food… food is awful… it’s a huge issue in our house”

“You have to start getting sleep. You need to sleep. If we have to run him high we will…. You need sleep.”

-          “But the lows… THE LOWS!!!”

“You have to see that you guys are doing all you can do, it get’s easier… it will get easier.”

 

*sigh*

A1C – 7.9 (great, thumbs up, keep it up)

Weight – 28 lbs (growing… that’s good)

Height- Can’t remember… (but growing… that’s good)

Blood pressure- don’t remember… (but fine… no worries)

Development- right on track

Attitude- typical crazy 2 year toddler (diabetic or not) as evidenced by the screamed NO’s and light-switch temper tantrum.

*sigh*

It’s not endless finger sticks, not blood, not injecting harpoon needles into thin skin, untangling pump tubing…

Right now. At this very moment… it’s the toll diabetes is taking on my mental health. It’s the crazy nature of the beast…. That you can try and try for perfect BG’s and never get them… you can go to sleep one night with excellent BG’s and wake up the next morning to a hypo seizure… it’s the constant worry (no matter how much I try to not think about) of future complications… eyes, amputations, kidney dialysis…

I put Saul down for a nap today and I gave him a cuddle and a squeeze.

Me: “Saul you okay?”

Saul: “Uh-Huh”

Me: “You feeling okay?”

Saul: “Uh-Huh”

Me: “Is Mommy okay?

Saul: “No. Mommy crrrraaaazzzzy”

Yep. That just about sums it up.

 

Oh 2013... I'm not going down without a fight.

As many of you know, 2012 was somewhat of a "difficult" year for the Grimes-Sebulsky family.

 

Not just my immediate family- but my extended family also faced a number of medical difficulties -including my Aunt's diagnosis and battle with breast cancer.

 

I had have high hopes for 2013... I'm working on my attitude and showing more gratitude. I'm trying to focus on positives and give back to all those who have given to me- because if 2012 taught me anything... it's that I was blessed to have received love, support, clothes, time, food, money, help and prayers. 2013 will be my year of reciprocation.

 

And... though the past two mornings have been extremely difficult for our family. I refuse to let diabetes take total control of our lives in 2013.

 

Saul has experienced two- severe hypoglycemic seizure-like episodes two mornings in a row.

 

I can only pray that none of my family or close friends ever witness what takes place- their hearts would break into a million pieces to see him suffering and so out of control. I feel for all the mothers and fathers of epileptic children who endure way more than what we have witnessed.

 

The first episode took place New Year’s Day. Jeff was asleep in our bedroom- EH and I asleep in the guest bedroom- Saul had gone to sleep in his bed. Jeff was the one who actually woke me up- yelling "Get in here! Come Quick!" Apparently he had heard Saul cry out... he looked in his bed, looked to see if he was with me, and was running through the house ... he found Saul lying face-down in the playroom- totally out of it.

 

Jeff and I both think lil Buddy was trying to treat his low by getting to his emergency juice on the back porch... but didn't make it. We didn’t use glucagon on him- got him up and able to drink juice- an hour later he was back to dino- dancing, car zooming and driving EH crazy.

 

This morning- (for me) - has been the worst episode to date. Jeff and I both rushed in to his bedroom to find him (either coming out of a little seizure like episode or getting ready to go into one). He was shaking uncontrollably, pupils fully dilated- he was out of it- but breathing, I held him while Jeff poured the juice down. Again- we didn't use glucagon... after 2 juices he stopped shaking and stopped crying out. After 1/4 cup of lucky charm marshmallows he was talking and laughing.

 

Because Jeff was here with me and we were dealing with it together... I think I was more upset and allowed myself to get more worked up and scared. I know this is ridiculous... but in the moment, when he has little to- no control over his body, and he sucks down a 15 carb juice in 15 seconds... I want to see immediate action... and well... it didn't happen this morning... and I just want control. I want to control him and control his body and his brain and well... I guess I should be more focused on my own actions and behaviors during a crisis situation.

 

I'm so curious how others handle seeing/witnessing/assisting hypo episodes. For the 3 (bad ones) he's had so far... I've held him and just repeated over and over "it's okay. it's okay. it's okay. it's okay."

The worst, and what sticks with me like some PTS experience is his crying/shouting/screaming out randomly "I'm SCARED!" and "STOP!" "STOP!" He's so terrified in the moment and it’s like he knows what’s happening, but doesn’t understand it- or how to stop it (not that he can) and it's so awful to watch him be frightened and not be able to help him.

 

But. You know what... He came out of it. He's okay. Daddy went to work. EH woke up. We've played dinos and cars and Let's go Fishin, and Hungry Hungry Hippos. We've watched Daniel Tiger and My Little Pony (yeah... I know... it's sad... he loves it). We've chased Daisy around the house, we've made 5 million messes, we've had a great day- despite diabetes trying to ruin it for us. We move on... We have fun. We live. That's how it's gonna be 2013... so get used to it.

Fa. la. la. la. laaaaa.... enough is enough.

Possible Blog Post Titles/Topics

 

Hospital Vacation:  

It was kinda like a special night away from home... except I spent it with a sick kid, slept on 5 inches of a bed, and wore puke-covered clothes for 10 hours straight.

 

The Feral Third:

Taken from a text I sent my friend Wayne, with regard to the thought of a "hypothetical" third Grimes-Sebulsky child... "Um. Yeah. At this point… it would be raised by wolves... or Harper... I’m not sure which would be worse..."

 

If you want him come and get him....

Taken from another text I sent out to close friends and family after debating whether or not to leave one of two -hysterical, fit-throwing children in the buggy at the store. "If anyone wants Saul... he'll be at the Hamburg Target, up front near the checkout... he's the obnoxious, screaming toddler in the middle of the meltdown… be prepared… it’s worse than Chernobyl… and he’s all yours for the taking." Apparently Mom was not amused.

 

35. 103. 101.

(No... those are not lucky lottery numbers). Last Sunday when I was the only "functioning" human in our house... I had a toddler with a BG of 35, a preschooler with a temperature of 103 and an out-of- commission-fevered husband whose temp checked in at 101.

 

WWJD?

Load up the sick, drop them off at the ER, and then quickly drive away or open a bottle of wine, partake of the entire contents, surrounded by the sick and needy.

 

2013

You will be better. I will be better. We will all be better in 2013.  

To blog or not to blog....

Each and every time I flirt with the idea of returning to work, Saul’s diabetes jumps out of nowhere  and screams “FOOLED YOU!”

*sigh*

I'll save that discussion for another post... I’m currently dealing with another bout of illness and round-the-clock –sick- care- management which means... I say to myself… “how could I ever work a full-time job when I gotta deal with this?”

I spent November contemplating my role as a caregiver, Saul’s Type 1 diagnosis, and whether or not diabetes (or my discussion of it) was worthy of a blog.  

I kept asking myself…

Aren’t there far more important and pressing issues to be discussed in the world?

Shouldn’t I just stop talking about diabetes all together?

Am I doing more damage by constantly droning on about a Type 1 toddler?

I say “I’m not gonna let T1 define him… but by constantly talking about it… am I not doing just that?

 

 

A mother of a non-T1 kid made a comment to me not too long ago. She was telling me about a lady she knew who had a T1 child. She mentioned something along the lines of “you’d never know her kid had diabetes, or that anything was wrong or different about him.” “She does such a great job of taking care of him that it’s like there’s nothing wrong with him and nobody knows.”

 

Because I overanalyze everything- my first thought was….

1.       I do a terrible job of taking care of Saul… because I’m always talking about what’s wrong with him, and everybody knows.

2.       I gotta stop blogging about diabetes… it’s like it’s all I ever talk about…

 

So I purposely decided to try and not blog about Saul and T1.

Which worked for a while…..

But ya know… it’s hard not to think about it,  write about it, let it define me, or my career, or keep Saul from doing everything he should, would and could be doing at any given moment.  

 

Diabetes is always here. It never leaves. From the moment he wakes up till the moment he goes to sleep it’s constantly checking, entering, measuring, counting, deciding, injecting, problem-solving, back-tracking, planning, extracting, worrying.

It’s a full time job…. and that’s on a good day…. a regular day… a day when he’s not sick.

 

I’m not naive. I know things could be worse. I know it’s not about me and shouldn’t be about me and maybe blogging about it all isn’t what’s best…. But sometimes I feel like it’s my only outlet.

Maybe someday Saul will look back and appreciate it… or maybe he’ll wanna kill me… either way… he won’t be able to deny…. he is a pretty entertaining character to follow.

Fall(ing)

Sure. We started the morning like this.

But we got those blood sugars up enough for some mid-morning shenanigans - as evidenced below.

 

 

I'll take falling leaves over falling blood sugars any day. 

 

 

Diabetes Jekyll and Hyde

If you don’t suffer from some kind of neurosis prior to a T-1 diagnosis you certainly will after.

“But he looks great”

“He doesn’t look sick”

“You’d never know anything was wrong with him”

“He must be doing a lot better”

I’ll admit, I was probably the most naïve of all of us when it came to understanding Saul’s diagnosis. I know I’ve already discussed it- but when we were told Saul was “diabetic” I was like “uh. okay,” and kinda shrugged my shoulders.

My initial gut reaction was “God, it’s not that bad.” I still remember thinking “well… no more sweets” and “so he has to take shots… I can give shots” and there are tons of people walking around who are diabetic… (I mean… granted they’re all OLD)… but really, “What’s the big deal?”

I know that so many of you out there think the same thing… and feel the same way… because seriously… sometimes those same thoughts still creep up.

.… and sometimes I hear/and am part of conversations that go like this…

(speaker): “you know (so and so) is diabetic and they’ve had it for years….  and they’ve never had any complications. They live like a normal life and are fine. I don’t know why you get so upset about Saul having diabetes.”

(speaker): “yeah, we have all kinds of diabetic kids at our school so it’s no big deal, they just go to the nurse a lot.”

(speaker): “they have a pump and you’d never know it. They never make a big deal about any of the stuff you ever talk about.”

(speaker): “why do you make such a big deal about diabetes… so he can’t have candy and sweets-it’s not like it’s the end of the world.”

(speaker): “yeah our cat is diabetic. We have to give him shots. How cool is that that- our cat and your kid.”

 

Do I want Saul to walk around sick all the time- teetering between ketoacidosis and hypoglycemia? Do I want him to live a life of surviving one coma to the next…  one seizure after another?…. Do I want to constantly blog from ambulances and hospital rooms… just so I can prove to myself and the world that living with Type 1 diabetes is in fact, a life-threatening, inescapable disease that we all must learn to manage and control?

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 Type 1 diabetes in a toddler and how it effects that individual and their loved ones.

Several events have transpired since that “Debbie- Downer- Walking- Dead” post.

I had a thoughtful (albeit unfinished) conversation with my guru Ashley. I pondered similar thoughts outlined by Type 1 blogger Kerri over at Six Until Me. I spent several days this week suffering through “sick day management” while I myself was sick. I’ve dealt with a few too many hypo episodes following this last change in Saul’s insulin regiment.  

 

I know Type 1 Diabetes doesn’t have to be a death sentence…

But it also doesn’t mean settling.  

 

November is Diabetes Awareness Month.  I feel compelled to advocate. Not just for Saul, but for everyone out there affected by this crazy disease – whether they look sick or not.

You can help Saul and others by educating yourself- something I wish I’d done before January 27^th. 

Oh you know... Just a Monday Ramble.

I’m not sure if it was Mabel’s passing, crappy weather, or just a stint of the “blah’s” whatever the case- last week can best be summed up as “ugh.” I ended Friday night in the fetal position on the recliner… okay okay… not really… but the thought was tempting.

I had zero energy. Zero creativity.  I had 2 nights of sleeping through Saul’s 3 a.m. BG checks. Friday morning Saul was in DKA. I don’t have it confirmed by a medical professional- but I also don’t need the confirmation because I saw it with my own eyes.

According to the MySentry he ran in the 400 for at least 6 hours… whatever the cause - (kinked tubing? old insulin?) who knows… I nearly passed out when his ketone check was 3.3.

He was a beast. Oh… friends… when he’s high… he’s such a beast. And now that he’s learning to verbalize (which is what I've been wanting all along) … I find dealing with his highs and lows way more emotional (for me) -  instead of just screaming or crying… He actually uses angry, hateful words…. On Friday morning as I was attempting to pump fluids and insulin in him - he was swatting at me screaming “NO MOMMY! NO MOMMY!”  

It was all I could do... to keep myself from envisioning a “future me” wrangling a “future” 17 year old man-boy to the ground and forcing him to comply to my treatment demands… “Oh you’re gonna get this insulin punk… whether you want it or not … cause… “ I’M YOUR MAMA… and you don’t MESS WITH YOUR MAMA!!!!”””

I know it’s difficult when you’re diabetic and you go through these hypo and hyper episodes… I’ve heard/read about and witnessed (not just with Solly) so many T1’s not being fully aware of the behaviors they are exhibiting during highs and lows…. It still doesn’t make it any easier for me. During 2 of Saul’s “hyper” episodes last week I bolused a correction of insulin gave him fluids and then left him lying by himself in his crib… because that’s what he was demanding. Every offer to hold him, carry him, cuddle him, move him to the couch, recliner to watch TV or sit quietly was met with “NOOOOO!!!!” “ME BED!!!!!!!!” “NO MOMMY!!! NO MOMMY!!!” So I would patiently wait outside his bedroom door for Bruce Banner to make his appearance again and for The Hulk to disappear so that we could once again resume our daily lives.

I won’t lie… I would much rather treat lows than highs…. Even though the lows are scarier… a bit more dangerous… def. more urgent… treating highs is just flat out exhausting.

Our house continues to seem quieter with Mabel’s absence. 

While I know Saul’s DAD is not pet and will not be a pet… it has given us all something to look forward to, think about and anticipate.  Sebulsky and I have been trying to out-do each other on the clever scale… thinking up names for our DAD. Most service dogs are given “special names” sometimes related to their line of work. A lot of the great ones have already been used…. “Siren” “Radar” “Meter” “BG” “Tracker.” Jeff came up with one that we both really loved… but Saul has trouble saying it… so we put it on a “maybe” list. However- out of the blue this afternoon - I thought up the bestest name ever. Sebulsky has since confirmed that I am currently in 1^st place and we do, indeed have a “winner.” Since the boys are sleeping I can’t get Saul to practice saying it… so we’ll have to wait and see how it comes out of little Sollys mouth first before declaring success. Meanwhile, Harper insists on calling the dog “Leslie.” I’m not sure where she heard that name- or why she likes it… but she’s renamed all her stuffed animals that, and the random 3 hour pet turtle we kept in the yard a few weeks ago, and she anticipates naming her “future bird” Leslie… All I can think about is that crazy white-haired guy who used to make those stupid movies with O.J. Simpson… wasn’t his name Leslie?

Oh… and back to Harper… Saul (much to Sebulsky’s dismay and disapproval) calls her “Sissy” actually it’s more like “Tissy” which I think is cute… Jeff… not so much so. During Saul’s last site change (after the 2^nd change out in 24 hours) he started crying and then demanding “NO TISSY DO IT” “TISSY DO IT” when it came to inserting the needle. I asked Harper if she wanted to try and she said… “ah… I better just hold his hand.” Which she did… and then wiped the little drops of blood from his old site with a tissue, then gave his 25 hugs and kisses, then sat with him on the couch and watched and episode of “Little Einstein’s” she’s seen 35 times. While she is a bit rotten, a little mischievous, a lot manipulative and way to smart for her own good…. Most of the time she’s a pretty good “Tissy.”

 

I’ve officially rambled way more than publically allowed.

So… here’s to a better week…

I hope we can all find more laughter than tears and more smiles than frowns.

 

 

 

Shew Wee... is it Friday yet?

What. A. Week. AND IT'S ONLY WEDNESDAY (it is Wednesday... right?)

Sunday: We recovered from the absolute madness of Saturday and Evans Orchard. We all took naps (well Mawmaw who never naps) didn't take one... but I'm pretty sure the rest of us did. I did. And really... that was all that mattered. Sunday night we took the kids to Gattitown for Diabetes Education Night which was sponsored through the company Animas. We were one of two families there. We got some sweet free diabetes swag. Harper scored 15 dinosaurs, and two stuffed animals. This girl is either super lucky or really, really, good at playing "carnival" games. Jeff swears the latter is true. Either way... she had a total blast... and... well... Saul ran around like a crazy TWO YEAR OLD... screaming "No" at everyone and everything. Pictures can be viewed here.

Monday: I did an observation of Harper's Montessori classroom in the morning. It was incredible. I was amazed.. It made me miss my kiddos at school. I am blown away by the progress Harper has made in just a short two months. She is already reading simple words, spelling and mastering so many skills. Her ability to focus and concentrate on work is fascinating to watch in the Montessori setting. I hugged Ms. Watt (her teacher) and told her I was grateful- I would have kissed her but I thought that might have crossed the line. From one teacher to another I will forever be appreciative that Harper's first introduction to "school" was in a caring, rigorous learning environment, with a teacher who encourages her to be an independent, well-rounded, life-long learner. *Can I also give a heart-felt-shout-out-virtual-hug and kiss to Grandma & Pap... without them... Harper would not be having this experience.

Tuesday: Saul had his 2 year checkup. Prepared for the inevitable meltdowns... a possible "hulk out" high or a "lethargic low" I packed as much "crap" as I could fit in my book bag purse…it entertained him about half the time we were there... the other half of the Dr's apt was spent with me repeating "no" and chasing him around as he attempted to pull off the tegaderm on his leg site. Stats: 30 some inches tall? 27 some lbs? (I think?) not really sure about percentiles and all that jazz... just know we got a clean bill of health and are growing and gaining weight beautifully... normally... like any kid... like a kid who wasn't diagnosed with diabetes at age 15 months. I have quickly learned that growing and gaining weight is critical for young children with an early T1 diagnosis. So far... 9 months in to diagnosis... we're doing great.

The girls had and eventful Tuesday afternoon- filled with a trip to the library for new books AND meeting a not-so-friendly, overly-feisty, fast and furious "turtle" that came to visit the Grimes-Sebulsky house for a few hours. Folks... it's the little things in life. lol. Seriously.

Now that I've bombarded you with 500 links... I'll leave you with a few pictures.

 

We've had some random breakfast guests lately

Solly & I enjoying a ride.

Little Solly looking not so "little"

Scored "D" swag

 

Girls making Saul bday cupcakes

The boys enjoying aforementioned cupcakes 

Harper's 2-hour pet "Leslie"
 

EH & MD posing with "Leslie"

 

A quilt in progress by one of Harper's classmates. 5 year olds in EH's class are sewing individual 9 piece quilts. I love it!

 

One of the books we checked out at the library yesterday. Preparing our kiddos for our future DAD!!!

 

Oh... yeah... have you heard!?!?! Solly is on his way to getting a diabetic alert dog? Keep up to date here and here. Thank you to everyone who has donated and spread the word! Keep the donations rolling. Lil buddy says "Tank Tu!"