Sickness sucks

My baby is in hospital.  I feel like a bit of a failure like I just couldnt do it - maybe I shouldve brushed up on my mini glucagon dosing or whatever and I just gave up.   Then on the other hand I tell myself hes so little, this is new terrain, we did the right thing.   He was dehydrated. Unable to eat. It was like torturing him trying to syringe tiny amounts of panadol and lucozade in his mouth.    Then came the breast refusal.   Yup something is r e a l l y wrong when he wont even take boobie milk!   Even if we couldve treated the lows, he had ketones we couldnt flush and an underlying illness.

After days of this gastro virus and vomitting and refusal to eat, we called an ambulance in the middle of the night to transport Danger Dad and my baby to the kids hospital.  Its heart breaking watching your small child being strapped onto a stretcher perched on DD's lap, drive off to the hospital.     DD said Reubens eyes told the story he KNEW about the hospital.  He knew what was coming.   But theres the decision, pain at the hospital or repeated dangerous hypos with ketones at home :( :( :(    If only I could take it all away for him.

Hes been there 2 days now and the verdict is he wont eat because of gastro, and cant swallow from sore tonsils and mouth ulcers (?) Im not a doctor...   He cant come home until hes taking all his food by mouth again so they can gradually decrease the sugar in his drip.   Hes getting antibiotics and panadol, and much needed fluids.   I think we made the right choice.    I do however know the struggle hes going through being tied to the machine and how awful cannulas , on top of the symptoms of illness:(

Im trying to keep things in order on the home front, my daughter vomitted on the couch, in the car, in my study....   Shes got her trusty spew bowl handy again today just in case. But her temps seem down and she was great for my sister yesterday.

I got the dreaded call from school.   My only healthy child seemed to have discomfort, perhaps a bladder infection?  Im definately going to fall in a heap at this rate.   My wonderful sister (thankyou thankyou) rang around, got him an appointment and took him to the dr, who advised hes fighting some viral thing...another day off school for him.   Josephine stopped vomitting and has kept food down, but now shes snotty and coughing and just randomly stacking it - you know when walking seems too much effort?

SIGH
I thought that my first night at home without Reuben since diagnosis I may get a sleep, but I was up tending to the other kids, playing musical beds (no, not the fun version with cheery music!) mine included high temps, vomitting, crying and lots of cuddles!   

So this is my 'omg sickness sucks' post, or 'omg diabetes and sickness that sucks do not mix' post. Or 'champagne is ok when used for medicinal purposes when sickness that sucks is rampant in your house' post.

Maybe when everyones better I'll be able to look on the bright side.    Right now its just one foot in front of the other until we take this sickness down!  (haha excuse the ufc joke, my husbands a huge fan!)

Im having Mum make the 4 hr drive back down here to help out (Thank God). 

Pox vaccine, vomit, temps, ketones

Where have I been?   Well lets see.   I took Reubs for his 18month old chicken pox vaccine.

Ever since -

Ive been poking my son every hour-two hours day and night.   Squeezing out blood to check his blood glucose levels repeatedly.   Poking again to check ketones.   Hes gotten up a few mornings in a row just vomitting down the hallway - every few steps - a huge distressed cry and heave - then up comes the contents of his tummy, mostly liquids.     Its hard to know if this is in response to ketones, a tummy bug or the high temp?

Being so little he doesnt understand.   Hes moaning, burning hot.   Refusing foods.   First his blood sugar is high so we give extra insulin to bring him down and get rid of those pesky (and dangerous) ketones.   We manage to flush them, but he also hypos during a half hour nap :(    Then I struggle the rest of the night to keep him in range by giving him sugars he flat out doesnt want.  The ketones creep back.   Im being creative here and the endo thinks I could 'tempt' him with fruit juice.   Oh dear, hes just gotta see lemonade, fruit juice, chocolate, lollies, honey, condensed milk glucose syrup...and he freaks.   My best bet at the moment is lollipops, lucozade or hydralite.  Perhaps Danger Dad can swing by the supermarket and get some iceblocks?

I really struggle with the force I have to use to hold him down and 'do' the things I have to do to help him survive.   Hes strong.   Hes too big to hold in cradle to get the panadol in his mouth politely, with him flailing around hes decided panadol is evil and fights it everytime.    Not to mention this is emotionally exhausting.


Today he wakes up in range but totally refusing food and fluids.    I had to call the hospital at 3.30 this morning.     He hypo'd a few times last night so neither of us got any sleep.   I wondered if/when I should take him in.   

Hes such a good natured kid considering what we need to do to keep him alive. Healthy. Well.  He is loved.   Its hard to tell a small child 'Hey Im poking you with a needle because I love you.   Im jamming this sugar in your mouth to prevent you dying.'   Bet theres the reality.    This is a disease that isnt going away. 

Insulin is his medicine to process his sugar, and sugar is his medicine when he has too much insulin.    Sometimes keeping it away from him, sometimes forcing him to eat it.     I feel overwhelmingly sad  I think its a natural part of the grief process.

I dont want to be morbid but I read an article on Dead In Bed Syndrome (DIBS)  early on in this journey and it terrifies me.   This worse case scenario... frig.     I dont think I will ever sleep.

* My eldest son had parent teacher interviews last night.   He got a rip snorting report. It was all good and then some !  Im so proud !

WHY I BLOG

Christy from  My 2 Sweet Babies has invited me to blog about blogging !   Specifically why I blog.  Its a bit of a project really, because she was invited by Dawn from Sugar Free CandyLand who in turn was invited to participate in the Meme by DawnMarie from Words from DUG (hope I got all that right.)  

So 5 good reasons? Meh, maybe not.   But they are mine.

1- To put info out there  - about having a baby with type 1 diabetes.   When Reuben was diagnosed at 8months old, I infact googled 'Babies with Diabetes', and found Christy who befriended me instantly and unquestioningly and for that Im grateful.  Suddenly I wasnt calling out in a dark room - there were others!

2- Meet other d-parents and become part of a new 'family' that understand.   Lets face it, people who dont live with diabetes have got much of a clue, and most dont want to!  Please if you read the blog and you never comment, please do! The more the merrier.  *No tools allowed. lol.

3-To pin down my thoughts - to prevent them multiplying or growing wings and flying around.    This is a mentally and physically stressful disease.   It helps to keep me occupied, proves to be therapeutic exploring thoughts that I cant necessarily mention over a coffee to just 'anyone'.

4-To preserve my husbands sanity.   Theres only so much listening and supporting the man can do! Pressure inside the D-home can be suffocating.

5-To support people and the cause- to be there to encourage others on this same journey. I am extrememly compassionate to other families in this same situation, living with it while waiting for a cure, and help spread awareness and d-info,.   Even if its just cyber hugs and a few links... its a start, right? 

Those are my 5 reasons for why I blog here.
Now, it is your turn! I encourage you to go on your own blog and do a blog meme about this very thing… why do you blog?
Here are the rules that Dawnmarie posted on her meme post:

The Rules:

1. Comment below to answer the question with five reasons.

2. Create your own blog entry to continue the meme.

3. Give credit and link back to the original blog post and to the blog where you saw the meme shared.

4. Tag your friends and encourage them to participate.

 

The friends I would like to tag and encourage to participate are:

Joanne from Death of a pancreas, Mel from eMpTy Page and Valerie from The dLife

Citipointe Live - Commission My Soul (2010)

My God is faithful, loving, full of grace and mercy. When this all gets hard, the joy of the Lord is my strength! He will uphold me with his Righteous Right hand, even when chaos is all around and Im dead tired and confused - hes there looking out for me. When Im asleep He is not. When Im weak he is strong. When I dont know the answers he does. When I cannot sort out problems HE definately can. His timing and ways may not be ours...but he has a better plan, a bigger purpose for me.

This is a beautiful song from our church. If I have no other purpose in this life, I want to be the best mother I can be. I want to prove to the Lord that when he was looking around for a strong, passionate, loving, resilient woman, and HE saw me, and trusted me with Reubens little life, that I AM the right mother for Reuben - and Reuben the right child for me. That we are a powerful team. That no matter how hard this diabetes journey gets for either of us, that we will continue learning and working at this and no amount of hardship will break up this trio :)

I want to display my gratefulness and thankfulness for my kids; and my love for them; by helping them to fulfill their God given destinies. When I get bogged down in carb counting and sleepless nights and endless alarms and Im overtaken by fear of my son having seizures or unconsciousness from low blood sugar, or complications from high blood sugar - I want to remember my passion for my children. I am their mother. They are my children. I will protect them with the ferocity of a wild beast. They are my gifts from God. I will do all I can.

From baby to toddler, issues issues

This morning I dug out The Hurricane's old diabetes log books.   We keep everything manually recorded still, though I use the function on the meters to do weekly, fortnightly and monthly 'averages', Im yet to get those baby's onto the pc.  Just feel like Im stuck in a rut.  (I have a chest infection so Im also very sick...blergh...)

Theres a few reasons for flailing around in this quagmire.   (Do you like that one?)   I doubt myself and if I even know what Im doing anymore.    Ive calculated and recalculated his I:C and his correction bolus.  Maybe Im overthinking it all but I feel like Ive lost any instinct I had because its all so changeable right now.

The last 6 months R has technically moved from baby hood into toddler hood.  Looking through his numbers I was surprised to see I had GREAT management skills of his diabetes after his honeymoon period ended and BEFORE he began to walk.  

T h e n  c a m e  t h e  r u n n i n g . . . .  

I dont feel like Ive been able to take a breath.   His insulin needs are changing rapidly - from day to day - in fact from meal to meal.   His appetite is changing, when I could rely on him to eat yogurt, apples, fruit toast....   now we are going through some food refusal.   Food play.    He also is seeing what his big brother and sister are eating and on occassion begs for that.  (Another issue entirely and a battle Im losing.   Im substituting low GI and healthier options, but my carnivorous husband says eating wild rice is like eating branches. Go figure).

So Im going through alot of processes all at once and Im pretty overwhelmed.    I wish it was easy, like giving an aspirin, or applying a bandaid.

Reuben is very active, but it is variable day to day.   Some times this causes afternoon and overnight hypos (its always a delayed reaction to very active days).

Reuben gets bursts of excitement like when we go to music class. This tends to spike his BGL, which I dont treat because it falls later on its own.

We are dealing with alot of food issues, learning to prepare healthy meals, low GI, when to space them , quantities, carb counts of and various other issues like a fussy family of 5.   Even when his plate looks perfect, he will eat the chicken off the plate then refuse to eat anything carbohydrate...(GOOD LORD!).   Hypo city...

Reubs likes to graze on foods when Im not looking (omg I need to lock the fridge, Ive found him in the lounge room, with  raw corn cobs hes pinched, taken them out of the husks, surrounded by the corn silks and munching happily.)  Reuben has a variable almost erratic appetite.  Why>  whynot.   Hes 18months old now.     Hes headstrong and determined.   Reuben will breastfeed some nights all night long and not others.    Because of his tiny tummy he can easily fill up on water (which I wont restrict because its very important for all of us).   Reuben is toilet training and tends to go potty (poo poos) only once a day now, so that means his belly is full and at meal times just doesnt WANT to eat. 
Reuben is getting a stack of big grinding chompers in the back of his jaw and it really bugs him.   This causes food probs, but also HI (pwd and d-mamas know what I mean, that is not a typo) blood sugars.   Then theres the issue with the expensive ketone strips...  

 Reuben sometimes daytime sleeps, sometimes not.

Id be surprised if anyone read this far, its really a rant and a whinge.   I need that alot these days!

I feel like Im going to fall in a heap if his Hba1c is cruddy at the next endocrinologist appointment.  

My shortest blog ever

I saw a status on a friends facebook page - and it was one of those crappy status shuffle programs, so not much thought went into the selection on their part,  but it really spoke to me.   I wanted to share it.


Isnt it strange that friends can become like family and family; like strangers?

I dont know what your experience has been like - but Im not taking any crap from anyone now my son has been diagnosed.   Its long overdue, I shouldve stood up for myself years ago!  Has diabetes empowered you?    I figure Im dealing with life and death daily.   Im tired.   Im working hard at being my sons pancreas.  I have no time for selfish people, drama and insignificant details.  

Life is so much bigger, and more wonderful and more precious than some people can ever comprehend. 

Down under - ass about - and way behind the times

Well, we are really slow here, and really freaking expensive.  

Im talking about CGM's.. (continuous glucose monitoring). 

 

JDRF say that a CGM  will benefit-all-people-with-type-1-diabetes. The system available here is used with the Medtronic insulin pump.    Click here for more info from Medtronic  .   The insulin pump itself is $8,000.   From what I understand the CGM component costs an initial outlay of $1,250 to buy the medtronic MiniLink REAL-Time transmitter and the sensors are extra and ongoing.  

Wait for it - $725 for a pack of 10, or $310 for a pack of 4.

(Wait should I fill a shopping cart with food for my family, oh hang it lets splurge on a box of sensors!)  

Keep in mind that one sensor is recommended for only 3-6 days of use....?

But wow, if only we had the consumables available on the NDSS, subsidised or partially, or accepted by private health insurers as essential to care and management of type 1 diabetes.  Part of my reservations about going onto a pump is that I dont know what his BGL's are doing now.   Most of our tests are essential night time ones sometimes 5+ that I scrimp a little on the day times ones.

I have to be honest.   I wish I knew what was going on in Reubens little body and some days wish I could poke him hourly to check.   Im the sort of person who likes to know.   I want to get better control and see trends, but for the sake of his poor little baby fingers (which are already developing hard black spots scattered around the perimeters of his fingertips and toes) I dont.

All I get is a number. Theres no trend.  A snapshot in time, you dont get the whole motion 'picture.'   Amongst the benefits of continuous glucose monitoring is reassurance, that confidence that it should alert you should your glucose level  get out of 'range'.   Also we could SEE what the patterns are, following particular foods or activities.    Something Im interested in;  having such a young diabetic; is the Low Glucose Suspend function that helps prevent severe hypoglycaemia.   It is equipped with an automatic insulin shut off so that the pump can suspend insulin delivery for 2 hrs when glucose falls to preset levels.


Its frustrating to get his BGL up above 10 for bed. Ive fed him some low GI food like custard or baby formula.   I wake up to alarms at night because I know he hypos virtually every night between 2 and 3 am, now with what seems no hypo-awareness.   I wish wish wish that the technology thats available would make its way through beaureaucracy and red tape and filter its way down here to us and baby Reuben.

For heavens sake we dont even have tubeless insulin pumps yet...   I think I might write to our health minister.

Saturday bloody Saturday

Its Saturday.   What a big week.

Today is a rainy day, the sky has this grey attitude like 'Im here to stay so don't make any plans'. Forget Danger Dad wanted to take the family to the art gallery and museum today.    The rain is solidly coming down, so the last thing I need is kids trapsing around town in the wet,  getting drenched and smelling like wet dog and later falling ill with some preventable cold or flu.  Sick kids are bad; sick kids with diabetes are worse.  

So the re-think today is grocery shopping. 

I have a list, Im just working up the motivation.   We usually do a kid split to help with the workload.   

Ive noticed something about this that seems unfair to me, and not intentional, but its happening.

Its always been easier to leave Reuben home.

Now, I dont do this on purpose but the thought of a toddler and shopping - not my first choice.  A diabetic toddler that has supply bags and additional food and testing needs..argh.   He never gets to come.

Im talking... rarely.   But so much can be taught from the shopping trolley.  We can talk about fruit and vege and do counting and discuss money and how to say hello and goodbye to the checkout girl/boy  person.

Now I feel guilty. Mummy guilt is the worst it really sucks.   Am I discriminating against my own baby son because the other kids are ... easier?  

Im going to take him shopping today.   

First Im going to research the carbs in donuts and a chocolate milkshake and take him for a treat like I do the other kids.   Then Im going to put $2 in one of those ridiculous shopping centre car rides that run for like 30 seconds....

Ahhh, Saturday.

Rubbery Red Jelly

Okay heres my question.

What did I know about diabetes before Reuben was diagnosed with Type 1 diabetes on 30th/31st May 2010 ?- (aged 8 months).

In the last year Ive been inducted into a fraternity that requires you learn SO MUCH about something you never gave much thought to prior.

Heres a list (digging into the deep dark recesses of my grey matter, blowing out dust, knocking out cobwebs and de-housing spiders as I go) -


My experiences with diabetes prior to R being diagnosed....

drumroll...

My brother was asthmatic as a child and in hospital to lose weight (to help his asthma) he was on a 'diabetic diet'.   This was sugar free rubbery red jelly. I guessed diabetes sucked  a$$, even then.

I read junior fiction books and lots of them.  You could say I was prolific.   One I recall was the baby sitters club.    The book was 'The Truth about Stacey'.    She was diabetic.

"Many of them, including her best friend, Laine, ditched her after she was diagnosed with diabetes. Her parents aren't much help; they keep dragging her from doctor to doctor looking for a miracle cure.  All Stacey wants to do is manage her condition on her own terms."

Another downer!

I saw a TV program, Supernanny I beleive about a family managing their sons diabetes badly.  I remember them scratching out carb counts and doing a play to show the other kids diabetes can be managed.

So-so.  Not much reaction Im sure.  I do remember watching it however.

I worked with a lady whose husband was type 2.   She stressed one morning that her hubby was away on a fishing trip with beer and bad food and no glucose meter.   I had no idea what his BGL was meant to be. I briefly asked her about it.

I belonged to a parenting message board where some mothers had gestational diabetes and required injections.

Now Im really stretching it...

But I remember my husband telling me he had seen an episode of a REHAB style show with a diabetic protagonist.

There thats it. 

I guess Im trying to talk-myself-into-not-being-hard-on-those-on-the-outer-circle.    They dont 'get' diabetes because they either havent been exposed to it, or have no imminent need to know about it.  Theres not heaps of education or awareness out there regarding type 1.  Or...they just dont care and are happy in their ignorance, misconceptions and fear.   I was definately in the 'no imminent need to know' category.     What about you?  

Getting past survival

We've been treading water it seems. 

I look back at Reubens average BGL's and it seems like his Hba1c isnt going to be much improved on last time.    Since this is my full time occupation managing little R's pancreatic goings-ons, then its like a report card for me... ? Or at least this is how it feels.  Does anyone else feel that?
  
Our 3 monthly endo appointment is happening in three weeks time.    I always feel like Im on trial going into them.   This is how I am with authority figures - nervous even when Ive done nothing wrong.    Ive just gotta see a police car and Im sweating bullets.  My mind will race back to that glass of champagne I had last Saturday at the tupperware party... gee hope thats out of my system and Im not unknowingly drink-driving. I know, crazy right?

Where was I?  Oh yeah. Treading water.   I knew this blog was going somewhere.

You know when someone is ready for change they get their hair cut?   Its an outward symbol of the condition of their heart and mind.   I fully believe theres plenty going on inside of someone when they want a drastic change (long blonde hair, goes dark, short and spikey)... that type of thing.   They display physically a spiritual change.   Time to change, to make over, to renew, to regenerate, to transition to the next thing.

Life is full of that.   The next thing, the next thing, the next thing.

The last few days Ive begun cleaning and nesting and making way by de-cluttering and taking stock.  (no Im not pregnant!) And all the bread and muffin baking?   I totally think change is on the horizon. 

We are fast approaching Reubens 1 year dia-versary. I feel like its time I got past these 'survival days' with diabetes.   I feel like Im ready to hit this thing head on, grab it by the horns so to speak.   Im going to stop posting about 'coping' - honestly I think Ive been preaching to myself to help me get through these days.

Im accepting the tiredness and unpredictability of our new life.  
 

Totally unrelated and unnecessary picture, couldnt have been buggered downloading an appropriate picture today! lol.J.

What if Life was Like a Choose your own adventure?

Anyone who grew up in the 80s and picked up a book, had eyeballs and possessed a basic vocabulary- would have at some point, read a "Choose your own adventure" or a "Pick-a-path" book.  Do you know which ones I mean...   Whatever happened to those stories?  They were awesome.  They were pulp fiction.   But they sure were fun when I was 7!

I pondered what my life would be like if  I was starring in  a "choose your own adventure!"

The phone rings.

a. Turn to page 13 if its your Mum asking if you are looking after yourself
b. Turn to page 45 if its your millionaire  billionaire husband  boyfriend letting you know your flight in his private jet to Paris is booked for that afternoon at 2pm
c.  Turn to page 77 if its your butler asking you to come to the western wing dining room as dinner is served
d.  Turn to page 111 if its the Nanny telling you your 3 perfect kids are smelling like roses and are napping simultaneously
e.  Turn to page 89 if its your endocrinologist - he doesnt understand why but your childs pancreas is now producing its own insulin, its fully functional!!
f. Turn to page 2 if its your banker on the phone.   Hes confirming was it 1.2 or 1.3 million you are donating to JDRF.

Heres the 'real version', it seems much more like a work of fiction.

Something bizarre happens.  What is it?
 
a. Turn to page 11 if your baby son is diagnosed with type 1 diabetes, an incurable disease
b. Turn to page 15 if it wont stop raining where you live
c. Turn to page 17 if you have to evacuate your home and all wordly possessions because of localised floods in your town
d. Turn to page 82 if category 5 cyclone yasi is headed your way- you must batten down the hatches
e. Turn to page 148 if you live in New Zealand or Japan and feel the earth moving
f. Turn to page, sh*t, wait,  forget the page, if you see a 10ft wall of water coming RUN FOR HIGHER GROUND.

What a scary start to the year.   I know its not funny but I have to try to make sense of it, or I would curl up in the foetal position and never get up.

I would never pick the paths life has set before me either.   I head on Oprah once that by time the average person is 30 years old they have enough heartache, trauma and pain that they could be emotional cripples.

True dat.

 But the resilient keep fighting.   

** **  **  **  **  **  **  **
resilient:
adjective

1.

springing back; rebounding.

2.

returning to the original form or position after being bent, compressed, or stretched.

3.

recovering readily from illness, depression, adversity, or the like; buoyant

Talking type 1 diabetes with friends

I had to share this! Enjoy.

Rango, Reuben and the fiasco of the half sucked lollipop

I wanted to check in today whether I had any bloggable material or not!   Ive gotten injured   (ouch) in 3 places on the same side of my body hahah. Darn you right side!  The result is a grouchy version of me constantly whining about my sore shoulder/wrist/ankle .   Lack of sleep + sore body + break from the gym = groucho.   I hope to catch up on some awesome D blogs I may have missed the last few days too.

Since I had to rest at home, I decided to start baking.  I dont think Ive been out of the kitchen in days.   I threw myself into baking low GI diabetes friendly muffins and loaves of bread to stock in the freezer.

Saturday night we discussed going to the movies.   Danger Dad didnt look enthused.   I wanted to get out as a family - other families do it , right?  

Should be fun.   And in some parallel universe -  it mightve been. 

But in my universe with 3 kids under 6 years of age, and the youngest with type 1 diabetes this was a really bad idea.     Rango was also a really dark movie, hence a bad idea for my 3 little kids.  Ahhhh, hindsight.

Anyhoo - moving right along with this story -   we decide to go.  

We get there late.    I scramble around in the darkened cinema trying to find Danger Dad and the 3 kids, trying not to fall downstairs (WHY do they put stairs inside dark places, design flaw anyone?) carrying a jumbo popcorn, large slippery coke, and juggling maltesers and mixed lollies.   I have a handbag on one shoulder, hypokit and diabetes supplies bag in the other and hooked over a finger, supplies for normal baby needs, nappies, wipes and such.    Im like a  packhorse.

Neighhhhh!

I locate them.   Finally sitting, I unpack and breathe a sigh of releif. WE ARE HERE! And Rango is juuussst beginning.   Its truly a miracle.   I glance sideways, Danger Dad looks tense, hes grinding his jaw.   It seems his anxiety is anticipatory.  Reuben is perched on his Daddies lap,  reaching for popcorn (we figured he would eat at the cinema so we held off his dinner).    This lasted say, oh, 5 pieces of popcorn and a slurp of drink...

He screams to get down and begins running from side to side of the cinema right in front of the screen.    Oh Dear Jesus.   This just cost us $50 bucks plus snacks.   Please please please make my kids behave.    My prayer was unanswered, I think the Lord has this idea that I need to build up some character.  

Well you know what happened next.

Im outside the movies chasing Reuben around because he was disturbing the other patrons.

Eventually Im worried about being OUTSIDE the cinema when Danger Dad was inside with the diabetes bags.   Very quickly Reubs can go from nicely in range to hypo, especially considering the dinner situation and all his excited activity.   I sneak back into the cinema with a wiggly screaching Reuben.   I hunt out the family.    Danger Dad says its his turn to go out with the Hurricane, so Im agreeable.   Rango is 30 minutes in and Ive seen none thus far.   The kids are 30% into the maltesers and Ive had none of these thus far!

Out they go.   They again LEAVE the diabetes bags.    Now Im grinding MY teeth.   Im stressed.   Im not thinking straight, what if Reubs has a hypo while DD has him outside running around, with no supplies?

I leave the 2 kids in the cinema and madly try to text message Danger Dad.  Have you got supplies for Reuben?  Where are you?  I can bring the bags out.   Rango is now playing over half way through.   The older 2 kids are oblivious to any goings on, but this type of scenario is always going on in my head.

With diabetes you have to be a few steps ahead to prevent disaster.

He texts me back.

Sitting in the car with Reuben to keep him from being too active.   Found a lollipop in the car.   Should be okay for a bit.

Saved by a half sucked lollipop from another day. Ewww. But Thank God.

I go back in to see the final 20 minutes of the movie.    But I cant focus.   I barely saw the start so Im not sure whats going on.   Im worried about Reuben.   Just HOW much lollipop was there?     I know DD will be upset because he paid for and didnt see the movie, and that he will be saying "I told you so!"  regarding going to the cinemas as a family.

The joys of being a family with diabetes.

Im sure I have just one more grey hair that wasnt there before Rango...

Dont underestimate the pressure of persons dealing with/living with diabetes and their families.   The responsibility is immense.  

Ding Ding Ding!

Diabetes is fickle.

What a difference a day makes.    

Here I was having a rest on my haunches.  Taking a win I didnt deserve.  Now diabetes has been kicking my butt around the ring.  Upper cut. hook. jab.cross. jab in quick succession.   The combo leaves me laying on the canvas, spent and wondering if his blood sugar will ever rise. 

Im waiting to do my 6th BGL in 5 hours.   This monitoring is tedious.  Constant.  Annoying.   Glucose syrup should work, surely?  Im highly irritable because I havent slept a wink.  Yet somehow, somehow I must get up, wipe the sweat off my gloves and go another 12 rounds with diabetes.  

(Or at least fight my way to school drop off, gymboree class and the grocery store for essential supplies! while managing diabetes, even though Id rather crawl into bed and pull the doona over my head and not get up!)

You know I do want to throw in the towel some days when Im physically and mentally exhausted and doubting myself and my ability to manage D for the Hurricane -  but who will get in the ring in my place?   He relies on me to fight this for him.

You know when you have a supposed friend.   And the friend mistreats you and leaves such a bad taste in your mouth - you are ready to move on to greener pastures?  You want to stop taking their calls. You delete their texts. But I cant avoid D. I have to continue to ring that friend. Spend time with it, check in on it.  Think about it, plan for it and make way in my life when all I want to do is dump it on its sorry a$$.  

I co-habit with diabetes.   Some days I am positive and upbeat about what has to take place and the rest Im overwhelmed and doubtful about my abilities to do this at all.    I am results driven and I hope for some decent control for Reuben, for his health, and Im left wondering how to get from A to B.   I feel like I need a cornerman to help me put my gloves back on, squirt water in my mouth, rub my shoulders and tell me Im going to knock this thing out in the 3rd. 

I feel entirely frustrated when I  serve him up breakfast, watch him play with his oatmeal like any normal 17month old child does (and refuse to eat mind you unless hes weilding the spoon himself!) then I have to halve the dosage, halve again, and halve again and find its well under the dosable amount.   Im frustrated that we watch morning BGL's climb in what appears to be new morning insulin resistance?  Im frustrated that just when I think theres a pattern emerging and I understand his little body and the effect foods and exercise have on him, and the timing of his insulin and the amounts - BANG - a sneaky punch I didnt see coming; I didnt duck in time; I didnt counter it.  Flat on my back.

Ugh.


Man, I have so much to learn.  

*Dragging self back into the ring*

{Off to check the effects of the last big dollop of glucose syrup. Incidentally have to keep my nurse hat on a bit longer this morning my eldest got up and sliced some skin off his finger... hope Danger Dad has some bandaids....}

Happy Hump Day

Theres more than one way to skin a cat  check your blood sugar!

Wikipedia - "treatment is burdensome"...awesome.

Last night was a good night.  

Still went to bed at midnight - woke to test at 2.30am (minus my new torch, despite not even owning it a week, has mysteriously gone MISSING! grrrr.   Only took me 9 months to get around to buying one in the first place.   I dont think I will replace it)    and hubby did the 5.30am.     Somehow in my sleep dazed state I turned off the morning alarm and so Evander was late to school.   Oooops.

What made it good was Reubens numbers.   He seems to be oscillating from high nights to low nights.  Last nights BGL with absolutely NO effort on my part was;

Before dinner - 11.5
After dinner - 8.0
Before supper - 12.7
Before bed - 8.9
During night - 8.9
Early morning - 6.8

What did we do differently in this science experiment we call Reuben's diabetes?

The truth is nothing.

What did Reuben do/eat/not eat/sleep/increase activity/decrease activity/did we inject his insulin differently?

Nada. Nothing. Zip. Zero.

It was a fluke. But I'll take the credit anyhow and ride this wave cos I do work hard at it :)   Plus my little munchkin is sooo awesome when hes in range.

Sometimes when we do everything right the numbers are high teens.   Sometimes I pay plenty of attention to the GI in the food and measure the quantitites and R is hypo-ing ALL day and hard to bring up.  

Well, maybe the endo and the DE's are having a lend of us about diabetes being manageable.   It could be a conspiracy.    Haaaa. Refer to-

 http://www.my-endo-probably-drives-a-redporsche-so he should know!.com.au or

http://www.endos-earn-the-big-bucks.com.au.

{Seriously I like our endos and I do value their knowlege and treatment of my son's "shooga"  condition.}

I was reading up to try find some info on type 1 to post on my blog and I found this on WIKIPEDIA of all places >>>

Type 1 treatment must be continued indefinitely in all cases. Treatment need not significantly impair normal activities, if sufficient patient training, awareness, appropriate care, discipline in testing and dosing of insulin is taken. However, treatment is burdensome for many people.

Wow, you think ???   Burdensome.  Thats an understatement.   We should create a day to celebrate Type 3's and their contribution to their Type 1's !!

Another random bit of info - Reuben has begun role playing the whole needle scenario with a toy thermometer out of a play 'vet' bag.  

THE WEAPON!


I hope his actions are more typical of clumsy toddler-ness than a reflection of how rough-handed we are administering his needles.   Its like something outta the shower scene in Hitchcock's "Psycho".   (cue scary sound effects EEEEeee EEEEeee EEEEeee!)   Reubs really plunges that thing into my thigh- Im glad its made of plastic!

Grateful

The past few days I've felt more positive.  

 Ive accepted Reuben is Type 1 and doesnt have neonatal diabetes.   

Insulin is how we treat him and Im grateful for that.   Im grateful that needles and lancets are no longer the size of hunting knives or fishing gear.   Im grateful he is alive.   Im grateful to wake up beside him and see his gorgeous infectious smile and grateful to get a chance to be his Mummy.

This post started out being about how Id like to homeschool Reuben, but somehow its turned out to be something different - about how grateful I am to be his Mummy and how thankful I am God has given me and Reubs a second chance.

On that Sunday at the end of May 2010, when I got desperate to know what was up with my poor sick son, I recall ringing a public health number.  

The nurse was thorough.   She had quizzed me
'Has he hit his head or fallen over recently?' 'Has he been vomitting?' 'Has he got a temperature?'.   
She is the one who advised me to get him to hospital JUST IN CASE.   

I got up from the study thinking, okay lets go shower (because Reuben had been vomitting and screaming, vomitting and screaming).    It couldve gone either way at that point.   It was a bit like slow motion  I was in two minds.   

Was I a neurotic mother wanting to take him to hospital when the GP on Tuesday had given us thrush drops, saying there wasnt anything wrong with Reuben... that he could see.  

Or should I just let him ride out this 'rough patch' and go get some pedialite from the chemist?   It was like the good and evil cartoons sitting up on my shoulders, battling over our destiny.   Battling over Reuben's life.

These memories leading up to diagnosis are vivid.    They almost haunt me.  I remind myself daily, I did what I could, I made the right choice.

I ran the hot water and Reuben and I stood underneath being soothed by the droplets.   I held him very close the way a protective mother does and I felt his little frame was very thin and he was just so so tired.  Exhuasted.    I felt the way he was struggling to breath.    This was NOT my little boy.   Reuben before getting sick was a live wire.   Strong, outgoing, independent, and very active.   He had been on track to walk well before his first birthday.

While his little body literally collapsed against me and his head rested on my shoulder I felt him sighing.   He felt awful.    He was giving up the fight with each exhalation.   I knew instinctively that he shouldnt go to sleep.

I prayed quite desperately as we stood in the shower, time stood still as the water bounced off our bodies and ran down the drain.

Lord I have to know what is wrong with him this has been going on so long, he is still sick.  

When I finished I heard a clear, calm answer.   But it wasnt an answer, it was a question to me.

Do you want your son to die?

I was shocked.  Of course I want my son to live, Lord.  Of course I want him to live.

So I dried him off and dressed him in some warm pajamas and layed him out on Josephines bed.   My mind began screaming at this point.   I cant describe the noise, like jetplanes were landing in my brain.    Inside my mind was like being in the centre of town, at a bustling intersection, midday traffic chaos, noise and glare but being all alone, tiny in the centre. 

I was standing in the hallway panicking.  Danger Dad came over to me and peeked in on Reuben, who was laying tummy down on JoJo's bed just sighing because moaning was too hard.    The significance of this moment was not lost on DD either.   

"Just take him in now Jules, I'll come later with the other kids".  

It was decided. I took him in and THANK GOD this all happened.   Reuben was diagnosed with type 1 diabetes.    I have been given my son all over again.    I am super thankful for each day I have him.   Im already jumping ahead in my mind (to things like homeschooling him) - what of his future? 

Thank God he has one.  Thank God I have him.   Thank God He gave me Reuben whom I love so much my heart swells with joy when I think of him.   I want to keep that perspective whenever Im tired of playing pancreas.  

This is no mistake,

this is the child
God has given me
twice. 

Blood Sugar test on baby

Learning to be a pancreas- Part 2.

Im quickly learning that Im a tired pancreas.

A pancreas doesnt sleep.  

 When we go to sleep ours (folks without diabetes) are busy doing whatever it is a pancreas is meant to do.

Because Reubens pancreas doesnt do what its supposed to - Im it.   So the boy is asleep, the pancreas is UP.

So Im up all the time, testing, checking, bringing his BGL back up.   When I see a 7.0 - I think to myself, thats a great number.... For freaking DAYTIME.   At  night while hes sleeping, in a matter of two hours this could drop down to hypo-town.

Out comes the glucose syrup.

Danger Dads been getting choked up at 5am about the boy not even being able to get a restful sleep without us poking and prodding and feeding and waking him.  

What a f**cked up normal :(   

{Sorry Mum for the expletive incase you are reading! }

I made a quick video today starring the boy himself of a routine Blood glucose test - just a bit of education and diabetes awareness out there.    Often I get the line "Wow, but hes so young!" 

 If you think the video sucks - sugar coat the truth for me, Im a bit fragile right now!    Link to come.....  

The long haul

This morning I completed my 5km run for International Womens Day.  

Ive entered this particular event for the previous 5 years on the trot (aussie for; consecutively).     Runners know that 5km isnt a huge distance but you need relative fitness to complete it without injury.   A few short months after birthing my babies Ive been able to complete this in under 30minutes.  I did it today in 20-something.  I love the sensation of being fit and strong and reaching goals.   Im determined and consistent with my training so I guess part of the satisfaction comes from not giving up/in.

Im proud of me because its a milestone each year.   Plus Im accumulating a nice array of race t-shirts!

When I pitched my blog idea for the first time to Danger Dad this a.m after returning home from the run (and sucking down a COFFEE - yes Christy you are not alone!), he laughed at me!   Lesson #1 dont bounce blog ideas off Danger Dad.   He wont like them!   

That makes me even more determined to prove that being a type 3, like myself also known as full time pancreas in training, otherwise known by my formal title Apprentice Pancreas, 1st year of training, can be likened to running.

I went out with a strategy today.  

Firstly I dressed appropriately.  

If I wear anything uncomfortable for the run I simply cannot run.   Runners - check.   Double socks - check. 3/4 running pants - check.  Complete support Lorna Jane bra top - check.   Dry weave singlet top - check.    Sunglasses and hat - check.   Race number pinned to front of shirt - check.    Car key pinned to bra - check.   In case of emergency person written on back of race number incase I make an ass of myself and trip/fall and need help, (Danger Dads mobile phone number -which Im sure he wont answer anyway because he will be sleeping on the couch at home !)  - Check.   Pre race fuel - Coffee (omg yes, its a problem) Red apple - Check!

The first 1km was about finding my pace.  Find a good rythym that works.   Jostle through the crowd for a clear path.  (I hate the bottleneck at the start!)  Get my foot fall right and my arm pumps relaxed but strong, with purpose.  Get oxygen on board.   Watch out for potholes in the road.   Eye someone up ahead and attempt to (how the heck do you spell it?) manouver? behind them ( into the slipstream).  lol. sorry i suck at that word.  You do know what I mean though.

The second kilometer is a funny one.    Rhythm is good and stride is good.  Body check, yup it all feels good.   Oh wait can you hear that? Its my hamstrings screaming from yesterdays body balance class haha.  No, all-in-all this 32 soon -to-be 33 year old body aint doing too badly!    If I was a racehorse they would let me live :)

The course is interesting, it winds through the city, past our beautiful river and up and down hills through our city Botanic Gardens.  Some pot holes and puddles in the path -  gotta watch out for those!

Alot of people start falling away, walking, or dropping pace and the path continues to clear up so I can stretch out my legs a bit more.   Up ahead I spot a lady I recognise (but unfortunately its a bridge she burned) so I happily gathered up my wits and my gluteous maximus and powered past her.   Thats about as vengeful as I get.

 But it made me smile nonetheless to cross the finish line well before her.

Passing a drink station, I enter the third kilometer.   Oddly theres men dressed in womens clothing handing out the cups as we run by!  A slight distraction.  

Now officially being over half way is a mental game.   I decided I wanted to power through to the end.  Im talking elbow other runners (oops, sorry) because the team runners spread themselves out horizontally like a row of paper dolls, dolls that were virtually coming to a standstill.... it had to be done folks.  And I did apologise!

I basically used what was in my tank for the final two kilometers.   You know how when you feel good everything fits-  its like turning the key, opening the door and seeing a welcome friend?  

Heres comes the worst hill, back over the river, up a steep pedestrian bridge.   Half way up this bridge is a coffee station taunting me.    STOP...come drink my caffeinated goodness! (yes I have a problem, thinking about coffee halfway through a race).   

Its a hot autumn morning and sweat begins to form all over even though its only 7am.   My knee begins to niggle.    Yeah, Im looking towards the finish line now.   I want it done. I want to see the big blue arches and check my race time.

(Now think diabetes metaphorically).

I really use the down hills and appreciate them greatly.    I use alot of power when the hills resist my momentum.   I set goals as I went along.   I talked to myself about the journey.   I congratulated myself when I did well, when I was strong.   I pulled back when I felt exhausted.  I used someone elses pace when I was fumbling to find my own.    I rode in others slip streams.   I shared a joke with other runners as we ran.  I elbowed people out of the way when I needed to.  I was prepared, I had the right equipment.    I was motivated even when there was no crowd cheering, no recognition or measurable success.   I wasnt hard on myself when people passed me but I wasnt arrogant when I passed others (except abovementioned bridge-burner).      I looked out for potholes, looked amused at distractions but kept plugging away, my eye on the prize.

Im in this diabetes gig for the long hall.

Pat a python

Danger Dad has taken the kids to pat a phython. In totally living up to his name's sake, they are off for a second visit to the snake handler to get their hands on this snake, with Josephine in tow.  

 Today  Im outnumbered in an argument about getting a pet snake but Im not giving up.  I dont want to look after Percy the python or Casey the carpet or Abby the anaconda or whatever the heck they are looking at.

My kids cried for a dog.

Mum we gotta have a dooooggggg.  All our friends have a dog. You are a bad Mum.   Only a dog could make me happy.

They promised me they would feed and water and toilet the puppy.

The dog is now my total responsibility.   Luckily I bought the breed I wanted because I had foreseen this situation.  

The kids dog = my new dog.

This brings me to my next conclusion.

The equations looks like this -

The kids new snake = my new snake = find yourself a new wife/mother.

Over my dead body.   I do not want to have a snake in my house! (Inside fish tank or not!) I could out run Hussein Bolt in the 100m sprint trying to get away from a snake.  I dont want mice breeding to feed this snake.   I absolutely dont want to wake up to find a python loving on my ankle, or leg or neck.   I dont want to discriminate against snakes but well, I dont like them!

Thankyou this meeting is adjourned.

**

NB.   Slightly high BGL at lunch so we gave Reuben chicken and cheese.  The hurricane is busy doing laps of the house, hes been left home from snake expedition (see above). Im off to the gym to re-centre myself :)

TGIF! (Thank God it's Friday)

Im glad its Friday.

I have great news.   Yaaaay I bought a torch today!  Since I blogged about it, I felt compelled to finally purchase one.     Its cute and pink and LED :)  Oh and it was cheap:)   Look forward to seeing whats happening during tonights BGL's.   Reubs has only had diabetes 9months...lol.

I will keep today brief since I banged on a bit yesterday.

I took the 2 youngest kids to gymboree today.   Why is it 50% of them dont behave?   My sister said once someone told her you get one pride, one joy and one challenge when you have 3 kids.   Im really unsure which is which at this point.   Will save that idea for another blog :)

Reuben has taken to helping him self to nana's (bananas) and co (corn) from the fridge.  This should make for some interesting BGL's.     Only a mother of a D-child would be unsettled about her kid stealing fruit or vege.

I have a great banana bread recipe all the kids love.   Have to remember to share it.

The other thing Reuben has taken to doing is coming to visit me intermittently screeching 'pooooo!' and patting the back of his nappy.  Not really sure what hes after.   *wink wink*.   "Honey, can you sort out Reubs, not sure what hes on about!   Im busy blogging...."

 Im working on getting more pics to the pc so I can share some photos of my sweet boy :)

Have a great weekend !

housework helper

This morning we had a 1.7.   Gee what a bad way to start the day, me running to the kitchen half asleep, clothes hanging off, hair sticking up, rancid sleep breath -  to get some glucose syrup to bring up the atrocious low number.    It was a totally symptomless hypo, yet we've called an ambulance on a 3.7.  Diabetes makes rules go out the window. 

(To convert mmol/l to mg/dL so they make more sense multiply by 18!)  

Somehow the other kids want to tell me things while Im getting Reuben back to a decent number.

Mum Ive got banking today....
Mum I had cheerios before you got up and I poured the milk myself....
Mum you know the guy on guitar hero has his hair done just like mine...
Mum I want a hot milo...
Mum can James come over for a playdate...
Mum I want to wear my pink sandals. Can you put them on for me...

At least they seem oblivious to my panic.  ( I get a shot of adrenaline that could be of use to me on Sunday for my 5km run Ive entered into.)

Once hes a little more lucid I give him a 5g chuppa chup lollipop to suck on so I can finish getting my eldest ready for school.   I follow that with his morning warm milk drink.   Within 15 minutes hes back at 9.8.   

After coming home from 'drop off' my daughter informs me shes going to be a big helper while I do the housework.   Omg I have to help myself from praying out loud that she might get distracted and watch playhouse Disney instead.   (Forgive me Lord, Im on my third child Im exhausted with them helping me do chores...I no longer have the patience of a saint, thats why Ive employed FOXTEL cable TV to babysit my kids so I can do jobs!)

But no.

She still wants to help.   Her eyes are sparkling blue full of life (or mischeif) and she has blonde curls that literally have a life of their own that rival Shirley Temple's. She is independent and headstrong. I have no idea where she got that from!

The pep talk to myself goes a little like this;   Jules, shes only little once.  One day just a few short years from now she will be busy with fashion and music and boys and not want to help her dear old Mum dust the picture frames.  Buck up!  Deep breathe.

First up dishwasher.    Shes half climbing into the dishwasher, things are randomly tossed in.  Jo grabs a few dishwashing tablets and sticks them into the slot, trying to close the flap on contents that will fit when pigs fly.    I smile and thank her sweetly. Awesome job darling, hi 5!

Making beds.    Shes laying in them playing parachutes.   Okay move away calmly, surely another job can be attempted more successfully. 

Vacuuming.  Shes deteremined in her 3 year old way to vacuum the whole house by scrubbing the nozzle over the same spot repeatedly for 15 minutes.  Way to go Jo! 

Im really doing ok.

Spray and wipe surfaces.  She loves the spray and not the wipe bit.   She proceeds to spray everything that I said NOT to spray.   After 5 minutes of this and trying to teach her that my suede couch and this spray dont really mix, I THANK her for her help and redirect her to the next job.  

I have gritted teeth but still doing ok.  No smoke coming from my ears or nostrils yet!

I notice shes wasted the surface spray I would use over a week in a few short moments.   Incidentally, Reubs always slips over in her random spray and wipe spots before I can find them.  He himself is involved in pulling my tupperware cupboard and bottom doo-dad thingy-majig draw apart.  

Next up, clothes folding.    Shes meticulous about folding corner to corner until everything looks like origami balls.   I ask her to deliver the piles to the respective rooms and she dumps them on the beds so they look like they never really were folded at all.

Good job JoJo, would you like morning tea, sweetie?   Perhaps we could read "The Berenstein Bears and the Missing Dinosaur Bone?".     By this point I really need a coffee and test Reuben's blood sugar again.
(Yay pat myself on the back I didnt freak out or yell !)  

Time taken :  1 hour.   Time taken re-doing above jobs? 1 hour.

Patience isnt my virtue - maybe Diabetes will teach me a thing or two.