2 weeks pre-diagnosis… when moses was his constant companion…

2 weeks pre-diagnosis... when moses was his constant companion...

That yellow blob a raincoat, the sippy cup trying to quench the unquenchable… and when he had moments of energy, he took his umbrella and danced with Gene Kelly… all the while, moses was his constant companion…


letting go ….and there it went…

ANTICIPATION… of this day, today. Since the moment I signed him up, for ‘create-a-musical’ camp, I have been in anticipation.  I have been thinking…  a lot.  I have been talking to myself… a lot.  I have reached out to other parents and I have rehearsed every possible scenario of how I would manage “IT”…

An hour on the phone with camp counselor the night before.  She had many questions and truly wanted to understand everything and even remarked how ‘they’ had to give eye drops to a student once that had to be scheduled at specific times throughout the day, so she has had kids with ‘medical needs’ before, not to worry.

My response:  Oh, Ok.  Well insulin is a little different and blood sugar checks, but he will have his phone.

My brain:  What?  Eye drops?  Dude (yes, I now say ‘dude’) – this is NOT red and itchy eyes!!!  

           Insulin IS…

                            NOT tobramycin

                                NOT visine, and 

                                       WON’T cure the redness and itching

      TYPE ONE diabetes is…

                            NOT conjunctivitis

                                  NOT contagious, and

                                           WON’T go away with 4 daily doses over 10 days!

              …there was so much more in my brain, for hours — I digress and on to the point

…this was about LETTING GO and

                          well, here is how IT WENT…

9AM:  Have a great time – see ya later – you have glucose in your pocket…?  I’ll be right over there at B&N, reading (not really, just skimming pages because Ill be thinking about your LIFE!)

10-ish – RING!

Hi Mom, gonna have a snack, I’m 134, gonna have (whispers, lets see thats 10, 20, 2 …) 22 carbs pecans and coconut milk – 22 carbs, wants to give 0.8, ok? …giving 0.7 and 0.1 for correction, OK?

Yep – sounds good

Ok – giving… bye.

Bye – Have fun…

stunning

Got up first time… also stunning…

 

Stunning – very happy for my little Obi-wan…

Got up first time…

…and so it went, our first time…

                            “camp without mom”

The day went the same, lunch, snack, all good,

— quick 8-year-old-boy-like  — “conversations”

 

Next day, same, then lunch call:

Hi Mom

Hey bud

I was 328, but I washed my hands and tested again – I was 181.

My brain:  WHAT!!  OMG – Really!!!  YOU retested on your own – YOU thought about the number and it didn’t seem right???  … and YOU retested…! ! !….didn’t give yourself 2 units when you only needed 0.5, thus creating a low so low you had to climb and scratch your way out on top of 5 juice boxes…?  Why wasn’t THAT liberating scenario in my never-ending self-talk?

My response:  Awesome – good thinking.  I am so proud of you for thinking that through and retesting. Good job Owen.

Yeah, so, gonna eat X carbs and wants to give X insulin… giving X + Y for correction, Ok?

Yep sounds good.

Ok giving, bye, see ya at 3.

Ok have fun.

Letting go and there it went… into the good hands of himself…

There he goes….

cleared for takeoff

…cleared for takeoff…

 


Imagine…

“Imagine”

Thank you for your beautiful inspiration, John Lennon.

Image

freckled Obi-wan imagines a cure

Imagine there’s no diabetes
It’s hard, but do please try
No finger pricks upon us
Inside us Islets thrive
Imagine all the Type Ones
Living without fear…

Imagine there’s no needles
It might be hard to do
Nothing to poke or bleed for
And no carb-counting too

   Imagine all the Type Ones
                              Living life with peace…

You may say I’m a dreamer
But I’m not the only one
I hope someday we’ll have our cure
And our pancreas will be as one

Image

to be anything, imagine that you already are

 

Imagine no auto-immune destruction
I wonder if we can
No need for tests and insulin
A brotherhood of T cells
Imagine all our immune system
Sharing all their space…

 

You may say I’m a dreamer

But I’m not the only one…

I hope someday we’ll have our cure
And our immune cells will live as one.


the miracle of 20 minutes – change is GOOD

When my Obi-wan was younger, he would go low within 15-20 minutes of giving insulin if he did not eat WITH insulin.  In the beginning, “They” said to wait at least 10-15 minutes after insulin dose.  This made sense to me because my younger brother grew up with NPH and R, where you waited 30 minutes to eat…

We tried 15 mins before eating, he went low, we tried 10 mins before eating, he went low… too often, within 20 mins of insulin, he went low — lows that were unexpected since he JUST ATE, right…!?  Sign language conversation with 3 y/o Obi-wan:

“momma, me need milk”

“really… you ate”

“NO!  Milk Milk!”

Obi-Wan as SuperNova-logger

Obi-Wan as SuperNova-logger

A miracle in and of itself, little Obi-wan feeling and reporting lows since day-ONE. He used sign language, “Milk Momma, Milk” , then he started verbalizing his lows, “I need MILK”, which transitioned by the time he was 4 y/o, “I AM LOW!” Still, from across a noisy room, he signs, “me low!”  … and I believe feeling low must be primal, so signing “me low” makes all that much more sense…

— proud —

I digress…

So, we have been reluctant (and quite nervous) to wait even 3 minutes to eat after giving insulin.

…heres how we got to our Miracle…

We have been struggling with how to manage monster BG spike after breakfast.  We tried a sensible solution, increase bolus… yet, monster BG would plummet 2 hours later (40s and 50s)…  We tried a basal increase 2 hours prior to breakfast, so at 5-6AM, new basal setting is doubled for that one hour, intended to impact the 7:30 AM breakfast that we expected to SPIKE at 8:15/30-ish – it helped a lot, but still, preprandial BG 90, 100, 120 – whatever happy monster number you like – became evil monster number 300-350 in an hour!

Ok, so why are we testing ONE hour after eating…?

P.E.

sports are tricky, including pump placement!

sports are tricky, including pump placement!

We always test before PE since he can start PE at 180 and drop to 60 in 30 mins (labile little monster)… that’s another story, we have to TREAT 180 if he goes to PE!  yep, glucose tablets and crackers and he still finishes PE near 100! — cra-zi-ness —

Things change… and this year of 3rd grade, PE is just after drop off:

7:30 BG 115, eat with insulin,

8:30, Pre-PE BG check 350… what!?!?  Is the site working? is the insulin bad?  …after months of trying to figure this out and not even considering to “wait before eating,” because well, we already know what happens when we do that… why would THAT change…?

…of course it changes…

we are — and diabetes is — a complex dynamic system of chaos.

For whatever reason, this complex dynamic system of chaos has shown us that 20 mins is our miracle number (for now).

…he no longer goes low 20 mins after insulin dosing and we now wait 20 minutes after insulin dose before eating breakfast.  He has yet to have another 300-350 pre-PE BG number (for now).

Our Miracle of 20 minutes — Change is GOOD — surely it will happen again.


five hundred eighty five thousand three hundred minutes

How do you measure…  Mah-Tab-O-Liz-Um  ?

…it was a crazy year, the first year my little Obiwan was diagnosed. 

Seven weeks and six days after he was diagnosed, he vomited.  He continued to vomit 3-4-5 times a day, every day, for one year five weeks and a day – about five hundred eighty five thousand three hundred minutes… of our lives… studying vomit.  Two 3-ring binders worth of daily logs: date, BG, food, insulin, vomit, how much, time from insulin, etc…

…in-ti-mate knowledge of metabolism, blood sugars, insulin… how apples behave versus oatmeal, how fast it came back up and how much of it came back up… which foods were absorbed fast and vomiting didn’t impact absorption (heh, I mean insulin dose), which foods had minimal impact, moderate impact, or full impact…?  How much insulin to give or not to give, how much food to replace, or not to replace – those were my questions … lest he drop to 30 or sky rocket to 300!  Usually the later in the beginning months since I was terrified of the 28 he once had post vomitus.

Docs finally figured it out, five hundred eighty five thousand three hundred minutes later.  A rare stomach condition (twenty known medical cases in the world-kind-of-rare – not even listed at NORD).  No known treatment, except one 12 year old girl in Korea, steroids were helping.  We all agreed – no steroids – not a good choice.  Our brilliant think-outside-the-box pediatric gastroenterologist at Cedars-Sinai suggested we try an over-the-counter, zero-to-minimal side-effects with short-term use medication, prescribed at toddler dose – it worked.  Less than 48 hours later, no vomiting – none.

I waited. 

After one year five weeks and a day, of course, I waited.  I waited for the other shoe to drop.  Still trudging along with bunches of towels and changes of clothes everywhere we went… and I waited.  How could it be that simple, after so long…?  T1D coupled with vomiting preparedness was our lifestyle, now.

It.   was.   that.   simple.

After 8 months on the simple med, brilliant think-outside-the-box pediatric gastroenterologist said he should stop taking it – stop taking the miracle med that helped get our lives back to the expected unpredictable diabetes ride…?  The miracle med that gave us the magical gift of T1D ‘normalcy’ again…?

The over-the-counter, zero-to-minimal side-effects with short-term use medication, prescribed at toddler dose DOES have long-term effects not good for anyone, much less a growing child with T1D.  Let’s do a trial discontinue.

WHAT!?!?!   NO!   WHAT IF … ?

…Spinnin’ wheel got to go ’round… ain’t that the truth.  

It was over.

Vomitus Vs. Us:  a grueling battle with T1D dictating the arena for five hundred eighty five thousand three hundred minutes – a freakin’ crazy year, but we won – kicked it’s wretched tuchus!

 


I want the yellow smile-y face

First time at the skate park, my little Obiwan wants to take his penny board, feels more comfortable on that size… ok…..  He is the only one with a penny board – they all have long boards – and a few people mention to me, “hey mom, you might want to consider a bigger board”.

I know.

I am so proud of him, he doesn’t care that his board is different and he doesn’t care that he is wearing his motorcycle body guard gear with all the elbow, wrist, and knee guards, plus the awesome helmet.  He is proud.  He starts out watching for about 10 minutes, then pushes his board with his foot to see how it moves and the speed…several times… then he rides the board a short distance…several times…. then over and over until he does the small hill, up and over, without having to push off again at the top.

He looks over at me and smiles.

Then he sits, quietly in the middle of it all – too quiet and pensive – I know he is low.  I wait for a few minutes and watch.  It felt like I waited 10 minutes, but surely it was only 1-2 minutes and I caught his eye and flagged him over.  Hey bud, this is great, how’s it going?  “great” …Taking a break?  “yeah” …How’s your blood sugar?  “fine, it’s at a good number”  …Ok, great, when you started you were 112, think it is still right around there?  “yeah… well, no I feel low”  …Ok, so wanna go get your bag?  “yeah”….

….and off he goes over to his bag, 1 glucose – I can see he is still pensive and a zoning… he looks at me, uses sign language (remnants of his first language remain), he signs “I AM LOW REALLY LOW” and I sign, “Ok, have another”… he chews up another glucose tab.  I recognize at my distance, the “I’ve been on a raft at sea for 9 days” kind of chewing madness coupled with spurts of breathing, no time to breath those slow and easy breaths.  He sits for another minute, gets up (still looks zombie-like to me!)… walks a few steps, watches… and goes back to his bag and signs, “I need one more” and I sign, “go for it”… three glucose tabs and another couple minutes and I see the glow – the energy – filling him up from his toes up through the top of his head, shinning through his eyes and out his finger tips, like when clouds move and expose the sun taking the shadows away in a smooth slow motion.

Whew… and DANG I am proud of this kid!

After about 2 hours he says, “Mom, I wanna try the big board. I think I know why they use the bigger ones.  With the penny board, I can only go so high up the bowl and it doesn’t lean around like the big boards. I will fall on the penny board where the big board can keep a grip on the side.  Also, the grip material on the top keeps me on better.”

How wonderfully astute and correct.  I love physics – I love when he loves physics!Image

All the boards have some kind of crazy design on the bottom

…and he says, “I want to get the one with the yellow smiley face.”

I think, wow, so amazing that he is unaffected by the crazy board designs.

He still just wants a simple and sweet yellow smiley face!  I know that won’t last forever – the innocence and freedom to just choose what he wants without influence of what he sees around him.

— I am in awe.


like an old instamatic

I want to try to write about the beginning, the middle, and the now-middle…  I have written a lot, the old fashioned way – journals – one day my son might read… If he can decipher my sloppy script (I try).

When I look back, his pictures show the decline and I recognize IT — BOOM… IT started right there! He was so sick, lucky for no DKA… In my mind, IT was a mistake, even though my brother was DXd with IT at 5 and I knew what IT was, surely IT was a mistake… after all, he was livin’ on breast milk and pedialyte for 2 weeks, y’know it all made sense, IT was just a ‘bug’ and the sugar-y pedialyte made the temporary 800+ BG, right…?  I mean isn’t that possible? why won’t the docs listen to me, “HELL-LO — He has been  l i v i n g   o n   P E D I A L Y T E…!   pedialyte = s u g a r … so won’t IT just all go back to ‘normal’ after he gets over this ‘bug’ and we stop forcing pedialyte…?

I found one article about 2 adolescents in England that drank huge amounts of soda and caused a temporary high BG and illness that sent them both to the ER and it resolved after 3 days.  ONE – just one article in the hundreds of archives of medicine that I searched trying to wrap my mind around the echoing sounds of “diabetes”  “your son”  “hospital”  “GO NOW”… then there was “bicarb” “insulin” “fluids”…

Still, I quoted the article, brought copies to the Endo that week – SEE RIGHT HERE!?!

Jan 23 2007, like an old instamatic – days felt strange, popping out at me, stick-y smear-y static-y moments of time looking all

      faded with tungsten-like hues and colors that didn’t really represent reality,

               absolutely more vivid now than when it was real-time.


A Grilled Cheese

"Because I eat like a kid" or "What's not to love about grilled cheese?" or "It was gouda, but coulda been cheddar..." (I don't actually like cheddar (or gouda) on my GCs, but c'mon, that's a clever phrase (that I didn't make up myself))

Raising My Rainbow

Adventures in raising a fabulously gender creative son.

Kerry Is King

One Girl's Reign Over Type 1 Diabetes

Jackson's Sports Blog

Just another WordPress.com site

Bigfoot Child Have Diabetes

for tell about type 1 diabetes (and celiac)(and LADA)

candy hearts blog

life on the island of langerhans

Diabetes Dad

life on the island of langerhans

Texting My Pancreas

life on the island of langerhans

diaTribe

life on the island of langerhans

Our Diabetic Life

life on the island of langerhans

TuDiabetes

life on the island of langerhans

Six Until Me – diabetes blog

life on the island of langerhans

%d bloggers like this: