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

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…

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.

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. 

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!" 

Birthday Weekend Re-Cap (with still more to come)

What would a birthday be without a 3 a.m. BG reading of 501? Or... a day full of running and playing and treating lows with delicious home aide Evans Orchard apple cider... Or... being so exhausted that you can't treat nighttime lows... Or TURNING TWO YEARS OLD and suddenly REFUSING every attempt to treat a nighttime low... "NO!" to skittles "NO!" to juice "NO!" to cake icing... Thank goodness for one lonely pack of Cars "gummies" which ended up being the ONLY thing this stubborn TWO YEAR OLD would allow us to put in his mouth.

But... This weekend hasn't been ALL about "D."

Friday (Saul's actual "birth" day) was spent playing with Trippy. He got an awesome new "Thomas-piano-book" from the Neely's which he LOVES.... and better than the book was the wrapping paper it came in... "DUMP CAR" wrapping paper. He has carried it around all weekend.

Maw-maw braved stormy weather and eventually made it down Friday afternoon. We spent the evening celebrating Saul's bday going "out to eat." Saul managed to shove in 91 carbs (thanks in large part to a 45 carb chocolate chip cookie) and survive the experience. Following the carb overload... and in one of my favorite moments of the bday weekend - we took Solly to Target to "pick out" his bday gift from Aunt Chris & Uncle Joe. I wish we'd videoed (how many times do I say this?) or attempted to document the experience... SOMETHING to capture the moment.... moments.... HOURS... it took him to pick something out. LOL. This kid is so much like Sebulsky it's not funny. He pondered. He carried around certain toys. He tried things out. He REFUSED to decide quickly... He reminded me so much of Jeff I wanted to scream. "Methodical." Then (just like his Dad) once he FINALLY FINALLY FINALLY decided (on a set of Matchbox Cars which included a dozer and a "dump car") he hasn't let them out of his sight or hands since (fully satisfied with the ultimate decision). Saul also scored with a Cars book (that includes a set of cars) and a new Umizoomi video (Thanks again Aunt Chris & Uncle Joe!). We topped the evening off by going to Half-Priced books to load up on some new reading material which made EH a very, very happy girl.

Madison and Wynne came over Saturday morning and we loaded up and headed out to spend the day at Evans Orchard. What a day! I think we're all still recovering from the excitement. Check out pics here. We picked apples from the orchard, we picked pumpkins from the patch. We ran, slid, jumped, climbed, rode, hid, walked, ate (apple cider donuts... yum) took lots of pics and made lots and lots of great memories. We even ran into some old friends and got to enjoy their company.

I'd like to say we came home and "crashed" but how could these kids rest when they had the "hugest... funnest... bestest ever birthday box!!!" to open from Grandma and Pap. Dinosaurs! Trucks! Legos! More Dinosaurs! Seriously.... will I ever. ever. ever. get them to go to bed ever again? So many new- cool-awesome-"perfectly selected presents" to play with!!! Leave it to Grandma to always send lots of love & fun! We miss you Grandma and Pap!!

Tonight we are supposed to go to Gattitown for a "family diabetes evening" with vendors, information and lots of free stuff. I'm hoping a family nap will give us the energy we need to round out this non-stop, fun-filled birthday weekend.

Thanks to all our family and friends who have "celebrated" from a-far, who have sent "special birthday wishes" and thought about our "sweet boy" on his special day. I hope he knows how much he's loved.

PS. ignore all the typos and terrible grammar... I've got what can only be called a "too-much-two-year-old-partying-headache-hangover"

Blue Skittles

Sometimes I forget the fear of that horrifying seziure, ignore the potential choking hazard, refuse to think about the dental damage and find myself entertained by treating the second low of the night at 2:30 a.m.

Well on second thought....

So I woke up this morning refreshed, rejuvenated and ready to roll. Despite the recent inconsistency in blood sugar levels, inability to make contact with UK for pump adjustments AND coming to the realization last night at 10:30 pm THAT $&$*@^& we only have 2 reservoirs left?!?... 2 left?!?...what do we do?!? what do we do?!? what do we do?!? only 2 left!?!?,................Saul slept like a champ and (according to MySentry and 3 BG checks) kept constant, stable "in-range" numbers throughout the entire night.

I celebrated the occasion with an updated FB status.

On top of successful numbers and sleep.... a frantic text to Jennifer (our wonderful-faithful Medtronic nurse) late last night was returned with the response "Fed-Ex'ing you first thing tomorrow morning." This definitely helped ease my mind and allowed me to sleep more soundly. 

I was actually thinking about buying a lottery ticket after phoning Medtronic this morning. I called in regards to Saul's delayed shipment of medical supplies.  When they told me "don't worry... we're shipping you some emergency supplies till your insurance authorizes our reques I allowed myself to let out another huge sigh of relief.

In between calls and texts Saul kept fussing and twice brought me packs of his emergency skittles. Glancing at the MySentry screen and seeing a SG reading of 141 AND being told to wait 2 hours after eating before doing a BG check- I rationalized his behavior as "sneaky" and "just wanting a little candy."

So we ran. We played. We had fun. At 10 I declared time for a morning snack. I sit down to check him and he's 36. 36!!!!! To date that’s the lowest number I've seen on a meter reading. *sigh* forget that lotto ticket. He presented no symptoms. His request for skittles had been an hour before reading. He apparently "felt" himself going low- I ignored his request the result is he plummeted.

A year from now - I pray - we never see numbers so low- because his DAD will catch them as I hadn't... and for the record his CGM was reading 115 (two arrows down) at the time of his BG check.

It's been the second time here recently I've misread his attempt to communicate with me.Last night after putting him to bed we listened to him cry for at least half an hour. His pre-bed BG check was spot on. MySentry reading 150. I peeked in once.We told ourselves he was mad because we hadn't given in to him wanting to take a drink to bed.

I finally caved. Walked in to find he had pulled out his insertion set (which had just been changed) and was bleeding... the tiny steel needle jabbing him repeatedly on his thigh. That poor boy had laid there in the dark crying the whole time. I said Saul... "why didn't you call for Mommy!" "Why didn't you yell pump!" (that’s what he usually yells when his pump falls out or he hears a CGM alert. He just kept saying "ouchie" "ouchie." It. broke. my. heart. However watching Harper jump into "I'll save you nurse status" late at night is quite amusing....anything to avoid sleep- although last night I think she really was concerned. 

We continue to battle highs and lows and attempt to curb Saul's desire to "graze" I seriously considered getting locks on our accordion folding doors yesterday to prevent him for getting into the pantry. I am trying to get to a point where there are no visible signs of food. Lord help us when he's able to actually open the fridge door.

Yesterday though sad- I had to laugh - when he came to me wanting something to eat and I said... lets go play cars...the look on his face was priceless... kinda a mix between "what the?"and "woman you gotta be kidding me.... get me a snack already."

The irony is... as I try harder and harder to cook low-carb healthy meals...I find myself desperately attempting to shove as many carbs as possible down my throat... when the kids aren't looking. I think I might have actually experienced some carb withdrawal symptoms a few days ago. Which speaking of I'm gonna go ahead and end this now so I can cram down a bag of sugar free cookies while the boys are napping.

Hey... whatever it takes to survive right?

I'll leave you with some adorable pics of the sweetest boy I know (I took these pics 5 min before his 36 BG reading) as you can see... he is not presenting hypoglycemic symptoms at the time... especially for a BG reading of 36.  This my friends is not a good sign and why I will soon be asking for your help in acquiring a DAD.

There's no drama like diabetes drama... and I've got it.

I'm pretty sure if I didn't have two napping angels sound asleep in their cribs right now - I'd be screaming profanities at the top of my lungs and possibly throwing a few random objects.

I can't even describe how I feel. It's a mix of rage, anger, frustration, disappointment and helplessness... but really more rage and anger.

Coming off of Monday's seizure during naptime- I've been just a wee bit anxious about his numbers- especially since I'm not even sure how low he actually got- and am still confused by what happened and why it happened and how it happened and seriously... a BG reading of 105? what? that’s not low? so how? huh? really?

I have yet to "talk" to someone from UK. I was sent basal adjustments through an email which I've made- and which have helped... but honestly I felt better when I was running a temporary basal at 70% (even though it was causing him to run high, appear sick, lethargic and have higher than normal ketone readings).

The MySentry is located in the living room with the outpost in the hallway outside his bedroom. I slept on the couch last night so I could watch it. While I intended to do BG checks every 2 hour - I somehow managed to only check him 3 times between 11:00- 8:00. The CGM data shows him dropping (to below zero) between 1-8. As I told Dr. K today... my only true way of knowing an accurate reading is to check him every hour or two... but I'm not sure how long I can keep that up. I woke up this morning at 6:30 and felt sick to my stomach. I wanted to puke or punch someone when I saw the "silent" alert going off on the MySentry "low predicted." How do I deal with the guilt of him possibly having another seizure while I force my own body to shut down and rest... knowing I need it for my own mental health. 

The drama continued this morning. BG reading of 165 upon waking up. Exact carb count (weighing each and every bite of breakfast) a bolus of 11 carbs with a correction factor... 20 min later CGM alarm... 394. 5 min later Saul yelling "low" (though he was really high) because apparently the symptoms feel similar to him and he has a strong desire to eat and drink with both highs and lows... I correct the 394. 5 min later he wants a banana- I bolus. 5 min later he wants an applesauce pack- I bolus. An hour later I witness what I can only describe as "an out of body-mind flip out experience." My guru Ashley has talked to me about some of the behaviors that can happen with both highs and lows and apparently this was my first real witnessing of that. Generally I joke about Saul "hulk-ing" out with highs where he gets angry, mad and fussy... but what I saw today was something similar to the exorcist.... even I was scared. He started sweating profusely, his face got beet red. He started pounding his fists on the table then pounding himself on the face and head. I grabbed him and he swatted and hit me. He threw toys and a fork. I checked his BG it read 160. Bizarre I thought to myself... Maybe this is some crazy temper tantrum... but it came on outta nowhere- he wasn't provoked... he wasn't upset. It was random. I quickly grabbed the control solution and tried calibrating the meter. I checked again- same finger- BG 232. CGM giving no alerts. At this point I picked him up- much like I used to pick up our cat Broni after I’d attempt a bath. I sat him on the couch. I turned on Cars toons. Thank God for STARZ On-Demand and I walked away. He calmed himself down. I went and made lunch. Minutes later its like nothing had ever happened.

At 11:30 lunch was ready. He ate ham, not even 1 strawberry, not even half a Wasa cracker (5 carbs) , cream cheese, 2 grapes. BG 136. As he is eating CGM starts alerting it has him at 176 two arrows down. I decide not to bolus lunch. I mean... I'm scared if he's really dropping and getting ready to nap... don't want a repeat of Mon. He eats. He plays. CGM continues to alert "low predicted." I give him maybe 2 oz of milk... again... no bolus for it.. CGM alerting low... I lay him down in his crib. ----Every time I put him to sleep now I tell him "Saul you yell Mommy if you start feeling how... you yell for me... okay." -----He generally says "tay" then rolls over... waiting for me to leave. He prefers to sleep solo... believe me... I've tried forcing him to sleep with me for my own satisfaction and piece of mind.

Meanwhile... I'm slightly concerned about a problem that has actually been going on for quite some time. As in... I can't even remember the last time it "didn't" happen. It's become so commonplace that at some point it I assumed it was normal- though I know it's not. Saul can not manage to make it through a 2 hour nap without his diaper soaking through clothes and bed sheets. He gets changed every single day and sheets washed nearly every single day. He is changed at least once if not twice in the middle of the night for excessive urination. I realized today... we need to address this. If his BG's were high at night- it would make sense- his kidneys would be working overtime to excrete- but he's not running high... if anything he's running too low. I never check ketones at night because of this... yet he's urinating like he's running high BG's all night. I'm so used to the process of changing diapers, clothes, sheets that I don't even care it happens- I just need answers. The thought of his poor kidneys taking the brunt of diabetes is a bit too much for me right now to handle... so I'll just shelve that to the back of my brain file and move on.

Matter of fact... I'm going to just push all this to the side right now and go do some laundry... or clean my bathtub... or put away toys... or do anything that forces me to not think about diabetes.

Sometimes I wonder.

During a daily twitter check, I stumbled across a girls you-tube video about non-diabetics supporting those with diabetes. She looks to be in her mid-twenties and she offers advice (I'll paraphrase) "don't nag" "ask how to help" "be patient." I gave it a re-tweet and "liked" on Facebook and now I'm sitting here thinking about what she said.

I've actually been thinking alot this morning... mainly about the future - Saul's - and... mine.

I thought to myself... man... I wouldn't want to be his pre-school or Kindergarten teacher. I mean... come on... if you think those folks have it easy... well... go observe some classrooms. I keep thinking... if his BG doesn't get regulated and it seriously continues to be a 24-7 managment of highs and lows what in the world are we going to do with him? Where will we send him? I'm not going to send him to a classroom with 26 other 5 year olds. What if he's like his Dad... and just "deals with things" never tells the teacher when he's feeling high or low cause he doesn't want to bother anybody or get in trouble. What happens when other people (lots of other people) witness his crazy personality changes... "hulking out" at high numbers and slipping into a quiet lethargic state during lows.

Will he be proud to show off his pump and monitor to all the kids on the playground. Will he be embarrassed and hide his pump and tubing so no one sees. Will he be sneaky and sometimes use diabetes as a means to go to the bathrrom or sneak candy who shouldn't eat?

How much should I be involved? Do I let him advocate for himself starting at a young age? Should I stay on him constantly about taking care of himself. Should I expect daily reports when I'm away from him?

I'm not a coddler. In so many ways I'm a hands-off kinda Mom... but how do I balance supporting him- teaching him- loving him without letting the "Big D" get in the way of a normal mom-son parenting realationship.

The "rough patch" that started about a week or so ago continues. The 24 hour My Sentry reading is ridiculous. I can't help but feel guilty like it's my fault... like maybe I'm not counting carbs correctly... maybe I'm waiting to late to bolus... and I can't help but wonder... will he ever feel guilty? Feel guilty for eating one too many cupcakes... feel guilty for being "difficult"... feel guilty for causing others to worry, stay up late, needing help... or worse... will anyone else ever worry? Will his teachers care.... or be frustreated that they have to deal with him... dread getting "that one."

How do I raise him to let the guilt go... to just accept it and move on. How do I raise him to laugh things off and find the humor in the cards we are dealt? Maybe I need to start with myself.

$4.00 therapy day

It’s 10:30 p.m.

Sebulsky is pulling another long night at the office and I’m sitting here finishing off a bag of .99 cent pork rinds and a $3.00 bottle of merlot while trying to find some deeper meaning to life.

Feelings. I seem to have an overabundance of those lately.

Which is why I just haven’t been able to hit that publish button… delete makes much more sense.  

So I’m going to vomit out some sentences that probably won’t make sense… and should really just be scribbled in a journal marked “for my eyes only” hidden in a bed side drawer….. BUT…. because it’s the digital age… and social media is all the rage… and I battle with insomnia…  and I can’t stop eating these pork rinds... yep… here it comes….  

Harper:

Harper starts Montessori tomorrow. We have to wake up early. I dread it. She’s nervous-  an emotion I’m not sure I’ve ever witnessed from her before - which makes me worry. She’ll do great. It’s just me.

I wanted things to go smoother on the first night before school… fix a favorite dinner… go out for orange leaf… read “the night before the first day of school” have her journal her emotions… what she thinks it will be like, what she’s excited about… nervous about…  give her a heads up about the schedule and what tomorrow will “look like.”

I expected her to be in bed at 8:00.

Instead

I forced her to lay down and stay down at 9:00. I took her book away at 9:10 which resulted in tears. Saul began wailing at 9:15. He went to bed with a BG of 380… which means I’ll have to get back up to check him and ketones in about an hour. His site should have been changed today but I didn’t do it.

She went to sleep. crying.

She went to sleep crying on the night before the first day of school.

Saul:

One of the hardest questions for me to answer from folks is “How’s he doing?”

I typically say “aww… he’s doing good” or “we’re adjusting” or “things are getting better… the pump is great.”

That’s what I said to my neighbor on Saturday, Mike the Pharmacist on Sunday and my co-workers at school on Monday.

I generally think most people assume I exaggerate his condition. Sometimes I even question myself. Am I over cautious? Is he sick? Should I have forced myself to go back to work? Has he ended up in the hospital?  Are his A1C’s bad? Has he gone into DKA?  Diabetic coma? Are we not “managing” just fine?

And then… it will happen.

Out of the blue.

When I’m off guard.

When I blow off his situation.

When I forget.

I picked up Harper and MD this afternoon from a play date with Isla and Julia. I thought Saul was acting strange in the car on the ride home but I chocked it up to needing a nap.

I got the girls out first. When I went to get him out I noticed he looked bad… terrible actually. I picked him up and set him on the sidewalk and he fell over. I kinda chuckled and told him to get up. He whimpered but didn’t move… I picked him up and he went limp. lethargic. lifeless.

I carried him to his crib. He was unresponsive… no talking … no crying. Sweat was pooling on his forehead, dripping down his cheeks… his pillow was wet.

40.

I grabbed the skittles off the dresser and shoved them in his mouth. I grabbed his hand… he didn’t even squeeze.

This wasn’t his first low. But. This was the first low he’s had where he was scared.

It was all in his eyes and eye movement. He was terrified. It was almost like he had no idea what was going on.

It’s been the worst episode yet.

It took 45 min to get him up to 111 at which point he fell asleep.

He woke up and was 61.

I suspended the pump.

He was 350 an hour later.

Some days I wanna say “he’s not doing good” some days “we’re not adjusting” some days “things aren’t better” some days “even though the pump is great… I still have to be his pancreas and do all the work.”

Me:

It’s easy for me to get hung up on stuff, to question myself, doubt my decisions my actions or lack thereof- it would be nice if I got hung up on all “the other” stuff.  If I focused on how great my life is. If I publicly acknowledged how much I appreciate an amazing, hard-working husband who is a fantastic Dad… If I expressed my gratitude to both sets of our parents who still come to our rescue when we need them…  who…  without them… the life I am currently living would not be possible.  

It’s 11:30 p.m.

I’m scraping the bottom of the pork rind bag… only crumbs.

The last sip of my gas station wine is gone.

Jeff is still at work.

Both kids are sleeping.

I’m calling it a day. I’m calling it a $4.00 gas station therapy kinda day.