There's nothing better than good weather and great friends.
This is my outlet for rambling. A space on the interweb where I will attempt to explain what life is like as a full-time pancreas. I'm a librarian (on hold) and a lover of coffee and cardigans. I'm a Mom to a dino obsessed T-1, 3 year old, and a tutu-wearing, bug wrangling, Montessori 5 year old. Sebulsky & I constantly debate the creation of our own sit-com... this website could serve as the pre-pilot rough draft.
Wednesday, January 30, 2013
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.
There's nothing better than good weather and great friends.
Sunday, January 27, 2013
Happy 1 Year Diabetes Anniversary!
Happy 1 year lil Buddy!!! We are so proud of you!!! We all love you and will be rooting for you- year after year!
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| Solly & Wynnie partying it up! |
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| Solly with his 1 year John Deere Tractor cake (EH's idea) |
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| Of course... presents! |
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| Happy 1 year Lil Buddy! |
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| A blurry pic of Wayner & Solly |
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| Digging into cake and ice-cream.... not even stressing over carbs!!! |
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| Big boy insisted on "big cup" |
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| Daddy & Solly checking out his cake! |
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| Yum. Yum. and Yum. |
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| Wynne & Saul's pic to Mawmaw and Papaw |
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| No trip to the Sharps would be complete without the "basket ride" lol. |
Thursday, January 24, 2013
oh yeah... that last post... that was nothing.
Just for fun... I'm gonna post these... and you can laugh (or cry) with me.
$2,823.26 (if I added it right) lol.
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| 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.
Wednesday, January 23, 2013
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.
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.
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.
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.
I saw this on FB yesterday:
Friday, January 18, 2013
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.
Wednesday, January 2, 2013
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.
Ihad 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.
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
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.
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