In the news

It looks like a schmancy mobile phone or mp 3 player, right?   Well its actually an insulin pump.  In fact, the first-ever with a color touch screen, and is the smallest insulin pump system currently available.   Its gotten the 'aye' from the US Food and Drug Administration to head to market.   Its SLIM as its name suggests,  and was designed to make diabetes management easier to teach and easier to learn. Additional user-oriented features of this insulin pump include an eco-friendly rechargeable battery and USB connectivity to a web-based therapy management software.   Gives us hope right that theres activity going on to improve life for type 1's.

Another thing you may be interested in is the progress of the artificial pancreas trial in Israel,
to watch the video click HERE.   I have to warn you it choked me up - I literally needed tissues.   I think its the anticipation and the idea that there can be a management tool in my lifetime that can take alot of the stress out of Reubens management.

Did you see this over the internet this month?    The JDRF published this to push the FDA. 

Finally an update on Dr Faustman working towards a cure for type 1 diabetes - if you dont know much about her work read up!  -
HERE  they are currently raising funds for a phase II trial.

I almost forgot he had diabetes

Yesterday was fun.  Spring sunshine, happy kids.  Danger Dad was in his element, trotting off to the store for a new paddle pool, waterguns and slip n slide (the other one ripped from overuse- Danger Dad is the kinda person who ignores the warnings that things should only be used the way manufacturers intended!)  

Lets just say that spreading it out over the trampoline and down the slippery slide so the kids can be soapy human torpedos.. will rip your slip n slide.

I had to laugh watching my youngest line up with the big kids waiting for their turns on the slip n slide - getting soaped and wizzing down getting sprayed in his sweet chubby face. 

I chatted away happily but after awhile I noticed Reuben had drawn away from the other children.   He was sitting on a little concrete block in the shade of a gardenia bush, looking on quietly.  

Somethings not right.

The day was so fun I wished silently that he didnt have diabetes.   Not angrily, just sad that he felt himself dropping and had to draw away from the fun to deal with what he was feeling physically.   I ran upstairs for his gear and tested him.    He was low.   Softdrink and chocolate later, he was back in the action.

Yesterday I almost forgot he had diabetes.

Omnipod in Australia

I posted previously about the tubeless insulin pump, the omnipod and how it isnt available in Australia.  My position isnt to tell you that tubing/no tubing is the way to go my concern is that when new diabetes technologies enter the market they arent welcomed as options that may help with the management of type 1 - for somebody.   (Think affordable CGM's and artificial pancreas!)

Today a good friend emailed me an update -

Omnipod: petition update

 

The reality of getting Omnipod in Australia still remains in doubt according to CTL the supplier in Australia.

 

Apparently a new model of the Omnipod will be available early next year in Europe, this gives us time to energise our petition and increase our noise level to try and get the Federal Health Minister to help us get access to the Omnipod in Australia.

 

 

 

See link for details of the new Omnipod http://en.mylife-diabetescare.com/mylife-omnipod-overview.html

 

 

 

There are now 699 of us who have joined our online petition ( here )which is great but we need to make more noise to convince the Federal Health Minister, Nicola Roxon to change the unfair reimbursement policies that will enable us to get access to the Omnipod in Australia.

 

We have decided to turn our efforts into contacting the two key Diabetes Organsisations and ask them to lobby government to change the unfair policy that is stopping the Omnipod reaching Australia and going onto the chat rooms and spreading the message.    

 

Attached is a list of other contacts and addresses for diabetes organisations and other contacts you may wish to write to.

 

You may also contact Nick Xenophon who I understand has already been approached by several parents from South Australia.  Level 2/31 Ebenezer Place, Adelaide senator.xenophon@aph.gov.au Tel: 08 8232 1144 Fax: 08 8232 3744

 

I wish I had more positive news, let's start making some more noise .

 

Cheers Alex

** ** ** **

Wanna help?

 

Heres the attached list of contacts -

 

Mrs Carol Bennett

Consumer Health Forum

POBox3099

Manuka ACT 2603

info@chf.org.au

Mrs Patricia McKenzie

President, Diabetes Australia

 GPO BOX 3156

CANBERRA ACT 2601

admin@diabetesaustralia.com

Mr Lewis Kaplan

CEO Diabetes Australia

 GPO BOX 3156

CANBERRA  ACT  2601

lkaplan@diabetesaustralia.com.au

Mrs Susan Alberti,

President, JDRF

Level4, 80-84ChandosSt

St Leonards NSW 2065

dansu@dansu.com.au

Mr Mike Wilson

CEO, JDRF

Level4, 80-84ChandosSt

St Leonards NSW 2065

mwilson@jdrf.org.au

John Douglas

Director, Closing The Loop Pty Ltd

PO Box 120

West Ryde NSW 1685

info@closingtheloop.com.au

Chair of the Parliamentary Diabetes Support GroupChair of the Parliamentary Diabetes Support GroupChair of the Parliamentary Diabetes Support Group

Parliamentary Diabetes Support Group

Chair, The Hon Judy Molan MP J.Moylan.MP@aph.gov.au

Dr Mal Washer MP mal.washer.mp@aph.gov.au

Steve Georganas MP Steve.Georganas.MP@aph.gov.au

For your local federal member of parliament go to;

http://www.aph.gov.au/house/members/

Chat rooms to visit and add comments

http://www.realitycheck.org.au/RCforum/

http://www.muntedpancreas.com/forum/

 

 

The orange box

Theres some things about diabetes that we dont talk about alot.   

But we freaking should.   My husband and I are 18 months into this journey as pseudo - pancreas (es?) .   Is pancreaii a word?

The long orange box is one of those things.   (The... ahem...one with the big needle inside).

Its almost as if talking about it may cause us to have to use, though we understand that to be just fear.   The panic.

But truly we should be educating everyone around us on this life saving orange box as well.

Everywhere we go, we take Reubens hypo kit.   Its been a complicated thing having to treat lows in a baby.  When Reuben was 8 months, 9 months old he didnt think much of juice and lemonade.   You could barely get him to take the things he needed to treat mild low blood sugars.   We had a few serious low episodes but we managed to squeeze some glucogel in his mouth and keep some of it there.     Its been a fearful time finding things he will accept to bring him up.   Now that hes 2 years old, weve been able to expand his 'odds on Reuben taking this hypofix despite the confusion and the fight' food list and include things like soft lollies and lollypops.  (Pop-pops to Reubs).

Thankfully now the hypo kit isnt jammed full of 'options', we just carry, juice, lollipops, glucojel, some soft lollies and the orange box.

Soooo - heres the piccy and a quick run down on glucagon -

GLUCAGON - What is it?

Think of it as LIFESAVING.   Put in simple terms, it functions as the opposite of insulin.  (Insulin is also life saving).   Insulin lowers blood sugar, glucagon raises it where there has been insulin reaction (seizures, unconsciousness).  Obviously unconscious persons cannot eat or drink the sugar they need to raise blood sugar, so the next step is glucagon.

Gulcagon is not sugar. It is a chemical that causes the liver to release its stores of glucose into the person's bloodstream. This "jolt" will last somewhere around 90 minutes after which they will still need emergency help as soon as possible.

The instructions inside the orange box are easy to follow - remove cap on vial, squeeze the liquid from the syringe into the vial, shake to dissolve the white powder, draw up the dose, and inject subcutaneously like you do insulin.   1/2 dose mark indicates for small kids, and full dose for bigger bodies....

 

We havent had to use it... yet.   But everytime theres a lower low.  Or.   Everytime we have vomitting or gastro.   We.brush.up.   Just to be sure.

 

Im grateful each morning when I see Reubens chubby little face and feel his soft baby skin and smell his baby sweetness as he kisses me good morning - and I havent had to administer glucagon.   Grateful I am.

 

Educating others about diabetes...

What can you do for  DIABETES AWARENESS?


Consider participating in the big blue test, see video above.

Wear blue clothing and accessories on Fridays in NOVEMBER   see the video below.

 If someone asks tell them about diabetes and the impact its had on your loved one and your lives.  On November 14th, World Diabetes Day, Bantings birthday (discovery of insulin was made by Banting, Best and associates.)   The day has been recognised since 1991, and was instituted by the International Diabetes Federation.   The theme until 2013 apprently is Prevention and Education am I wrong in saying here that yet again, the focus seems to be on Type 2?    The blue circle symbolises unity of the global diabetes community in response to the diabetes pandemic.




Change your profile pictures to blue in November and particularly on 14th of November.

On another note, familiarise yourself with the symptoms of type 1 diabetes - the onset can be rapid and fatal if not correctly diagnosed.

Being excessively thirsty

Passing more urine

Feeling tired and lethargic

Always feeling hungry

Having cuts that heal slowly

Itching, skin infections

Blurred vision

Unexplained weight loss

Mood swings

Headaches

Feeling dizzy

Leg cramps

(per diabetes australia).

If you dont beleive me on the vague symptoms, read our diagnosis story -  HERE

November November.. a busy month.

Big things going on in November.   On a personal note,  a couple of Birthdays -  My daughter turns 4.   My husband gets older...(ahem).   I have a parent night for my daughters transition to big girl kindergarten (yay!),  and some vaccinations, dental appointments (eek), the usual rounds of music, dancing, swimming and tennis... and to wrap it all up at the end of the month, an endocrinologist appointment and the dreaded hba1c...

Anyhoo -

November is big because it is Diabetes Awareness Month.

November the 1st was Type 1 Day

and

November the 14th is WORLD DIABETES DAY

If I could educate others about diabetes - what would I say?



I would say my son has a chronic illness. 

 His pancreas doesnt work.  I beleive it began to shut down when he was a tiny little baby and by 8 months his body was so sick he was admitted to emergency and we almost lost him due to lack of knowledge and routine sugar testing in our GP's office.

His childhood, whilst I fight for it to be as normal as possible, it isnt.   He cannot be with any adult who isnt aware how to care for him and his diabetes.  He cannot be anywhere without his medical supplies and appropriate carbs.
 
He no longer makes insulin and we need to inject insulin into his body.   For everything he eats.   At the moment its 2 needles at morning, and 2 at night.   Some regimes we've been on mean around 6 needles everyday.  Carbohydrates without insulin are poisonous to his body, and high sugar levels result in dangerous toxic by products called ketones.  Insulin without carbohydrates result in scary low blood sugar episodes.  

I cannot say with any certainty whether my son is okay or not.   You cannot 'guess' a blood sugar by looking at him. You have to take his finger or toe, and lance some blood and check his levels.   Heartbreakingly, we have to peirce his skin repeatedly, on average 8-10 times a day and through the night.  

We try to predict by looking for patterns, but I cannot say with any assurance that he will be in range from the decisions we make, or that he will be high/low or that he will wake up tomorrow at all.

I do know he wont 'get better' he wont 'grow out of it' he continues to require insulin until there is a cure.   Sadly diabetes is an invisible illness, so people think we have it 'under control'.... but parents (type 3's) and pwd,  have to so intensively manage the disease it often leads to depression and burn out.

I cannot say that diabetes is as 'manageable' in a baby and toddler as the brave faces at the hospital let on... 

I do know there is very little education about diabetes - plenty of ignorance, and mistaking it for type 2 or what little people know about it.  
Type 2 is essentially a different disease, but gets all the media spotlight/funding.   I do know they are now discovering genetic causes of diabetes that until recently were always just treated like type 1.

I know there isnt enough education for doctors in general practice.

Not enough info and awareness for parents who find themselves with a child with a mystery illness... desperately trying to get help.   Type 1 children can die before being correctly diagnosed, or not being diagnosed quickly enough.   They can also die from high sugars and untreated low sugars.   This is serious stuff.

Despite the fact that one in around 800 school children in Australia will have type 1, there is a lack of support - in the community, kindergartens, in schools, at the hospital.

Our kids dont seem to have a voice.

Is it because they are children?  

PAWS for Diabetics Inc

For some reason I was trawling the net and happened across an Aussie charitable organisation called PAWS for Diabetics Inc. 

http://www.pfd.org.au/index.html

 They are non profit and train and place assistance dogs for diabetic persons. 
Dogs are trained to alert impending hypos. (Low blood sugar, which if untreated promptly can lead to seizures, coma and death).

Since my blog is written specifically to the DOC, I guess there arent many folks reading without knowledge of type 1 diabetes, but heres an example of how quickly this can happen.

Wake at 7am.   Have bacon, eggs and toast for breakfast.  Dose insulin to correct, a basal to carry him through the day, and enough to cover the food.   The carbs to be counted in this breakkie would be for the toast.
9am - Busy playing, all looks good.
10am - Morning tea.  Reubens BGL is 2.1, hes crying, whingey, hands shaking and seems confused. He needs 5 jelly beans before he can have his morning tea. 

Imagine if I didnt do additional testing and only tested when the hospital says to - breakfast,lunch,dinner and possibly overnight if you WANT.  Seriously.  

Now my dog (Millie is a one year old Bichon Frise) has alerted us of hypo episodes when Reuben is low enough to begin shaking.   But then she has also alerted over some highs, which confused us, probably confused the heck outta her too.

Read the profiles on PAWS for diabetics website.   The dogs would truly be a blessing to diabetic persons, since in this backward country of ours, CGMS are incredibly expensive and most models not even available.  Plus you would have a friend also!

Maybe in a few years.

The exorcist, Aztecs and Anxiety

His body writhed and his arms punched the air, presumably trying to lash at me and make me stop.  He repeatedly screeched Heelp heeelp helppp! and threw his head from side to side with gusto.
Restraining his arms and legs and trying to get his head still was almost impossible to execute.   Beads of sweat formed on my forehead from the exertion.

And then it happened.

It was the horrible.

Like something from the exorcist.   My beautiful sweet son gurgled and projectile spat his antibiotics, which I had only just administered, right into my face.   The pink pungent goop ran down my face and neck leaving some markings Basquiat would be proud of.   Who wouldve thought 5mls would feel like so much when hit in the eye with it?

I was cranky.   This isnt my first rodeo with Reuben and antibiotics he wont swallow.   This past week he has gotten a staph infection... in his eye.  :(      We have to give this horrendous stuff to him every 6 hours and the dr wants to see him again Thurs to make sure its clearing.  

Yesterday I thought I'd get sneaky after a night of him spitting the medicine, and surreptitiously administer inside some coke.  My sister even agreed it was worth a try.  Coke is to my kids what Gold and Cocoa were to the Aztecs.   Mixed together I kidded myself it looked like a cherry coke.   Yummy, right?!    Obviously didnt taste that way,  as Reubs is a smart little cookie, he screwed up his nose, dumped the bottle no matter how much pleading I did.   Imagine my pissed-off-ed-ness  surprise when he went to the fridge for his sugar free lemonade instead!

This blog is going somewhere - I promise!  

Curiously if I had to sum up life with a diabetic child in one word - it wouldnt be difficult, tiring or even bittersweet.

Before you peek at my answer...   what word would you use to describe being a D-rent/Type 3 or a Type 1/2 as the case may be....

...Id emphatically say life with a diabetic child has been...
..
..
..
..
..
..

ANXIOUS.

It sucks ass.  You worry non stop and for very good reason.   This disease dictates to you all day and night and threatens your child with yucky dangerous symptoms and complications.

Your mind isnt free to rest.

So the dialogue on a normal day is pretty busy busy.

The dialogue when your 2 year old has a nasty spreading staph infection in his eye ball where he MUST take antibiotics to clear it up, OR (this is where anxiety goes into hyper-drive because you know the rest of the story) the OR is we end up in hospital, hubby has time off work, R has a drip in his arm with a IV dose of antibiotics, and hes more miserable than if he'd just submit and swallow the damn medicine!

Then theres the things I havent ever thought of before but since things like having a child with Type 1 Diabetes happen to "other people" and Im now one of those "other people"...   they pop in to visit occassionally...

being hit by lightning/hale/flying debris in a storm
a small plane/big plane/fighter jet/helicopter crashing out of the sky
a tree falling on you in a storm
a tree falling on power lines and falling on you or your house
a tree falling on your car
and on it goes ... 

until you say STOP.
 Really.   I have to say enough.

Some things I can cross off the list if Im reasonable enough.

I called the electricity company about the tree branches hanging over the power lines, and we dont go out in storms.   That eliminates at least numbers 1,3 and 4.

I decided you wonderful people are right, I need more sleep.    I need rest to cope with the demands of diabetes.  I need to insist on time away from the constant care, where I switch off.    Last night I even dreamed for the first time, of diabetes.   I was testing myself in my freaking sleep!!

Gotta draw that line.

Time for a new look

Time to update and revamp and overhaul...

The  blog that is.

Lately weve been revising things in our personal life too, throwing out, sorting, packing into boxes.     

Maybe Im grasping at straws, mistaking the sense that if Im in possession of an organised pantry, wardrobe or linen cupboard, that somehow Im in control of diabetes.   Having the salt besides the pepper, and the quinoa with the polenta matters - and soothes.  Its strokes me and holds me after treating a 1.9 that leaves me shaken and agitated.  It somehow makes up for the 24.8 that registers on the meter...and therefore nullifies my inadequacy as a pancreas.   Matching shoes lined up take the sting out of the thought of future diabetic complications.     You get the gist.   And you also know its bullcrap and artificial. 

Maybe the idea that if I plaster on some make up everything is ok with me?    If I just get enough concealer on my eyes it wont show that I havent slept in 17months since diagnosis.     If only I sacrifice enough for my kids, I can somehow win back the normal healthy child that I mourn.

Maybe if Im hostile enough - you wont see the fear.   The fear that my sons life hangs in the balance each day and night and that I know its my responsibility. 

Its a pretty heavy load to carry.

 My husband is my best helper and yet, he doesnt manage Reubens pancreas like it was his own.  Lets just say, Reubs is Chief Executive Officer, Im Regional Manager, and hubby is Assistant to the Regional Manager (Thankyou Dwight Schrute).         He can drop off for an arvo snooze without as much as a moments thought because why wouldnt he... he knows someone else is ALWAYS awake caring for Reuben.   (That would be me).   Me, I cant nap knowing Reubens got active climbing insulin on board, maybe didnt eat the right type and quantitiy of carbs, heck I cant even sleep if Ive treated a low or dosed for a high, until I see it through.   Every night I make sure to stay awake long enough so that theres only 4 hours between my bedtime and hubbys morning alarm. 

My fuse is short.   Not going to pretend on that one, the anger is definately there still.   The most sensible thing I can do is stay out of situations that make me want to rip someones head off. 

I cancelled one of my daughters activities in a moment of fury.   Honestly, I dont need to pay someone to yell at my kids.   As well as anger, Im overwhelmed.  Mostly its all just too much.   Like stuffing a bag full of items, and knowing full well there isnt enough room, the bag stretches and splits and its innards spill out.     Thats me, and my bloody emotional entrails.  I dont like it, but there it is.   Im an honest person.

I dont have the fortitude to listen to someone tell me I gave my son diabetes because of gestational diabetes (which I did not have, thankyou very much).There isnt actually any link between gestational and type 1 anyway -    so shut your ignorant ass up.   I hate it when people tell us dont worry, my son will get better as he gets older.   That he can take tablets one day, that he will grow out of it.   That perhaps the doctors are wrong.  Okay okay.    Chia seeds, honey and cinnamon may help, but they wont CURE F*CKING DIABETES.

I hope my sister doesnt mind me sharing, but this was written to me this week after my most recent 'episode' an hour and a half sobbing to her sympathetic ear...

                                  "...least I can try to be there for you emotionally.  Dont let that f*cker D kick your  ass.  You are too good and as you learn to be a better pancreas for Reubs it wont have as much power over you.   You are phenomenal and your strength really does inspire me!.  Love you lots x."


She said another profound thing to me, that I put so much pressure on myself.   Perhaps its an illusion that everyone else has got it all together and manages fabulous control and I beat myself with it.   I definately dont like the feeling of not being good at stuff and Diabetes is so changeable and a beast to learn to manage and add to that the nature of the toddler.   

Undoubtedly this is THE most challenging and testing thing Ive ever had to do.   Will I ever feel like I'm coping?

Great news, my Mummy is here to stay awhile, and we are going to the craft show together.   Apparently arm knitting and crochet and recycled fashion sewing is popular this year (thank goodness, I dont think I could enjoy another year of buttons and paper tole!)

A few steps forwards

Honestly, I know why toddlers are so darn chubby and cute. 

Their behaviour is off.the.charts.ridiculous. Its in their survival interests to be adorable so we keep them. 

Today on the way to school drop off, I let Reuben walk.  Hes been waking with a higher than optimal blood sugar and figure its a good way for him to kickstart the morning, rather than cruising in the pram.

We prepare to leave a few minutes earlier (probably shouldve factored in an extra half an hour) to allow his little leggies time to warm up.   Hes got his new sandals and some socks to protect his tootsies, so we set out the ONE BLOCK up to school.   It takes me about 3.5minutes to dash up there each day before the bell rings. 

Sans kids that is!

The trip is four of us.   My eldest son, and his sister, a 3 year old who insists on being a princess, drifting along, collecting flowers and all the while stroking her hair and showing off her sparkly shoes to passers-by in the most regal of fashions and

trailing behind is my 2 year old who has to physically STOP walking to watch a bus *or truck *or car *or ant *or bumble bee go by.   I mean -  until its literally out of eye sight.  

You get the point.   When the object disappears from view, then and ONLY then,  can he carry on.

Last week he was great, so I think hes fighting something right now.   The sudden unexpected drops in BGLS, especially through the night, and the unprecedented whinginess that is the soundtrack to my existence....    

So after a restless night of Reuben screaming 'help help help' interspersed with 'go way go way go way', we started the walk off ok.   Slowly but surely.  

Until
the
pedestrian
crossing.

We wave and hug and kiss and send kiddie #1 on his way to class.

Apparently one of the flowers Reuben had just picked got dropped on the crossing and was now being driven over by busy morning traffic.   Lets just say, the kid has some healthy lungs and displayed his vocal ablility, right there beside the crossing, followed by a roll on the footpath, kicking his legs.

Oh my God.   I groaned and was *that Mum* who rolled her eyes, folded her arms and set in to wait patiently until it was over. I assured him we'd get another flower then proceeded to carry him home again.

When we finally got home, I was pleasantly surprised with a package.

Yesterday I'd called up Abbot diabetes care and arranged a co-pilot data cable to use with his freestyle lite to download his BGLS to pc.   I think I have to approach this with the way I learn best - remove the emotion (disengaging) and treat it like a study - with a coffee, a highlighter, ruler and to do list.

First on the agenda, is working on hubby not over treating the early morning hypos he catches at 5am.  Right now the only thing we can get Reuben to take at that time, in that groggy sleep is a warm milk drink.   But it doesnt have to be so carb laden.  Hes working out how much to give to bring him up a couple of points only.  With Reubens little body it isnt much.

Lately Ive been thinking more and more about seeking out a private endo.   Theres not much support at the hospital we go to, and misinformation.   I intend to ask some questions at our next appt, such as why is our target range 4-7 when it seems like such an unrealistic and defeating goal with a toddler.   The text they gave us at diagnosis says kids under 6 should aim for a BGL of 5-12mmol/l depending on alot of factors, like activity appetite, time of day and safety.   The aim for hba1c apparently is 7-9% under 6 yrs of age.   

Anyway Im not making excuses and expecting the parameters to be loosened, I know where we eventually have to get R's BGLs and to try keep them for his long term health, I just want to be clear whether Im falling within, above or below the line as a pancreas to my son!



  

Why bittersweet?

The title of my blog.   Ahhh.  Well, more sweet than bitter.  I know your life with a D child is too.   D just casts a certain cloud over normally happy and stress free events.  But you manage, you factor in diabetes like it has its own persona (which the volatile little b@stard actually does). 

I recently read a friend on facebook had posted.

'When life deals you lemons... find some vodka'.

Anyway, todays post is about two seperate incidents.  Bittersweet, both of them.   And both happened this morning.   Just thinking about them makes me tear up. 

Both tore at my heart in a similar way. 

Where my kids are concerned there is only the deepest most protective kind of love.  Selfless.   The word slave The word servant comes to mind.

Ordinarily, I dont make a habit of looking around my sons room, as I clean up I stack his precious papers and writing books and put them into his draw.   Hes quite prolific, writing out poems and songs and stories with illustrations,  hes also a list maker and note taker.  Love this about him.   For some reason today, I picked up some books and flicked through.   There were words in his immature-learning-to-write-scrappy-little-boy-trying-to-stay-inside-the lines-kind of way.

He had written a story entitled 'My little brother Reuben'.

My breathe caught in my throat, and I swear I almost turned blue.

He wrote 'My Mum has to keep him alive.  I hope she can keep him alive every day.'

My head spun and my heart raced.   Diabetes is a huge deal, and we pray together regularly for things, I guess this story was a heartfelt prayer, a big brother, worried about his little brother, and this disease.  Painfully aware of the stress it causes his parents - the weight of this on his little 7 year old shoulders.  My smart, funny, sensitive little boy.    Seriously this just makes me so proud and sad, all at once.

The other incident...

It happened early, straight after Reubens morning test and insulin dosing.   Josephine has taken to helping me invert the cloudy protaphane insulin, she also begs to flick the needle to get rid of the air bubbles.   Amongst other little things, shes always got the needle clipper ready for me to take the sharp needle off the end ready for disposal.   

Today after the needle was safe, she wanted to give her stuffed elephant some insulin, so I took the opportunity to talk with her about Reubens pancreas being effectively dead, and when she eats sugar her body knows what to do, but Reubens got to have medicine given to him.   She surprised me and told me she knows that when hes low, he needs sugar.  When hes high he needs more medicine.    Frickety!  

Suddenly she stood up, a look of panic on her face, and yelled 'Hes hypo hes hypo!' (The elephant that is, not Reuben).   I follow her out to the kitchen and shes got some string cheese from the fridge and stuffing it forcefully into the fabric mouth.   So, okay this is all amazing, shes got the hypo sorted, except that I had to explain that cheese will do nothing for a hypo and she better give her elephant something with sugar in it, like a juice.   

Normal innocent childhood play, with diabetes in the house.   Sad, but proud.

Thats why its *bittersweet*.

Wordless Monday!

Despite Diabetes

Today I was totally inspired by Joe.

Rocking a hula hoop.

Heres what my baby does despite diabetes...

Random diabetes cruddy things I didnt want to learn

So theres the big things.

You learn to test your childs blood sugar.   You learn what the numbers mean.
You learn about insulin, storing it, dosing it, injecting it.   You learn about carbohydrates.

Am I right in saying, then theres the things that you learn on the job.  The things the doctors couldnt possibly tell you.

Like -

Reuben wore a pair of shoes for an outing a few weeks ago.   His foot was sweaty and he managed to work up a little blister.   Well over the course of a week it got worse, and infected and affected blood sugars.  It just never healed like a non diabetic child heals.   We were advised to go straight to hospital because any infection and foot problem not healing for a diabetic is super serious.   Really a tiny blister creates this much havoc in our lives!   I had to call out an after hours doctor, we got antibiotics and a have been using a cream and redressing it twice a day for ages.   Its that crazy.   I got him new more appropriate sandals.

Ive learned about hot deep fried chips.  Yup they are deceptive little suckers.   Reubs chowed down and in an hour his blood sugars were great.   Two hours, terrific, hours three to five where high, and hard to get down.   The fat content.   Lesson learned.

The other stupid thing is, I filled a script for more medicine, but because Reuben is so little, this particular medicine, he gets 2 units each day.   I got five boxes, five vials in each, it would take a whole year to use up!    As I stocked it into the fridge feeling glad Id topped up supplies, I checked the expiry date, the chemist had given us insulin that expired Oct 11.     Really.   Use one, throw out 24!


Always have appropriate footwear on your kid for the amount of miles they will be doing.    Check.
Deep fried chips cant be good for any of us!  Check.
Always quiz expiry date on medicine before walking away.  Check.

** ** **

I dont know if blogger is acting up for everyone, but Ive been trying to comment repeatedly on your blogs and its just not working :(

Back from holiday...

AND IT WAS FANTASTIC!

Its so nice being away from the normal routine and responsiblities.   The kids had an awesome time.  AND it was great seeing my Mum and Dad.   It was special for my kids to spend that time with my parents, they love them to bits, its the sweetest and closest relationship my kids have with anyone outside of my husband and I.  Oh my Gosh... we are home and Im tired, but we did it!

First things first, Diabetes.   Well, I overpacked just to be safe.  I played through every scenario in my mind, and although anxious decided it was a fear worth confronting.   I decided taking BGL's more often were in order.    Im not sure I like to think about Reuben being so low he doesnt wake up, but its a fact of living with Diabetes that he could be unconscious, need glucagon, or worse not respond to the big needle and need a sugar drip.     The flip side is stubborn highs, ketones, in hospital.    Then theres emergency management - theres snakes out in the country that can kill you.   Theres bee bites, which thankfully Reubens never had but who knows what that would do.


But thankfully we needed none of that, I treated hypos quickly like at home and all was good.  I took quick acting carbohydrates of every variety because Reuben is fussy when hes hypo.    If he would just take juice all the time, we'd be set, but thats not the case.  So we left late afternoon I boosted him before we got in the car.    He was 10 as I drove away.   Halfway and after a 2 hour nap, I retested he was 7.   We had a few lollies and two more stops, for toilet, dinner and retesting.   I had to give his dinner medicine and correction at a fast food restaurant.   Then we made the final half hour out to my parents property.  We arrived tired but without a hitch.   

Something I learned is when your diabetic child is really into horses and cows and puppy dogs, his blood sugar sky rockets from excitement.    Then later on it plunges after doing rounds and rounds of the paddock! 

My parents horse is currently in foal, she looks huge now, its hard to imagine shes not giving birth until next February.   Shes a lovely animal and really curious.   She whinnies (sp?) as you approach, like shes saying you better be bringing me a snack, and comes running like a puppy.    When you go into her paddock she continually crosses your path at 45 degrees to block your way, waiting for snacks.   (Thankyou Bonnie and Dad for the 8 bags of horse poo I was gifted for my vege garden and fruit trees!)

Being spring its also calving season, so all the moo moos were either pregnant or had a suckling calf.  Pretty cool to see for real and close up, being city folks.    It was really cold so we stoked the fire place and cuddled up and had cuppas.   Thank God for my parents, we prayed together for Reuben and all the babies and children and adults suffering from type 1 and for a cure for this bastard disease.  

Dad's also keeping bees so Jo helped him (I use the term helped lightly) extract honey and we came home armed with 4kg of fresh honey!!   The last jar Mum brought for us we ate in under a week.  (I think my husband ate MOST of it).  Yummo.   Where they are is peanut country, so they also gave us a huge stash of honey roasted peanuts.  I love to blitz it with some peanut oil and make a paste so the kids can dip their apple wedges.      We came home so blessed Mum got the kids some toys they really wanted, my car was so loaded up!

I could go on all day about fresh air and peace and quiet, but it was worth it to see Reuben just so into country life, he just has this affinity with animals and Grandad. 

Ok, so it all went off without a hitch? Wrong.  The trip home was awful.   Reuben was car sick.   We left at lunchtime, which means his protaphane was peaking at its most aggressive, and despite boosting him before we left, he was having stubborn lows from the mornings activities.    It was his first dose of travel sickness, so getting any carbs into him was a struggle.   He doesnt normally react too badly to a 3.5 or a 4,  5,  so mostly his blood sugars were there.    Finally I got a lollypop into him, then he vomitted.   We stopped to clean it up, and he had a run around in a park then downed a full juice, and we finally made it home.    A 4 hour trip took 5 1/2 hours.  Perhaps I shouldve just left late afternoon after protaphane had begun to wear.   I guess you learn as you go.   

I feel much more confident travelling with Reuben and his diabetes.   We did it.  Hes safe and we had a great time.     Next time my husband plans to come with us which should make diabetes easier to manage and afterall hes got a bit of hippy/bushy inside him too.

Wish I could put glitter in my pipe and smoke it...

Im not really involved in the unicorn-rainbow-glitter-ram it where the sun-dont-shine, attack our differences rather than support and convince-you-our-way-is-the-right-way disagreement.   

I have been reading blogs that discuss the issue... Im sad that its upsetting my DOC friends. 

Its sad the DOC is divided.   We have enough on our plates without being un-supported BY EACH OTHER. 

Judgement and selfishness come to mind right now.

This has made me examine myself.

My blog.  And.  The things I choose to share regarding living with a child with Type 1 Diabetes.

I would think it pointless to get on here and rave on endlessly about how wonderful my husband is.    After a while you guys would think I was Bragger of the century and not stop by at all!   It wouldnt be true to myself and who I actually am in real life to bang on.  I just feel like its insensitive and... deceptive to portray your life as perfect....     Im thinking about that bit of bile that comes to re-visit when watching a couple spoon feed each other a peice of cake....   Rather than think its sweet, Im in the do-that-in-privacy group and arent-you-grown-up-enuf-to-operate-your-own-cutlery?     Its pretentious and a big ol' show.

Hence why I dont actually visit any glittery blogs!!

Im sensitive to the fact that other people feel comforted and can nod and agree in the struggles and hard times we face.  Dealing with D and other areas of our lives.   

I have alot of blessings in my life.  But this blog is about diabetes.   I dont count it a blessing... nope I didnt want this package, I dont think our name was actually on it ! 

It would be nice if I could just glitterize things, but I have a reality.    Just this morning Im preparing to make the 4 hour trip over the weekend to visit my folks - who have beef cattle and a horse and geese and motorbikes..  who live a good 30 minutes from a town.    Its infact the first time Ive been since Reubens first Christmas, when he was 3 months old.   Then he was diagnosed with type 1 the following May.   I have a hard time getting my three young kids ready to go to the park to play let alone on a long trip.   I cant pretend its not producing anxiety and worry.   Im truly sorry that I ring Mum and burst into tears, when I just planned to ring and ask when we could come, but its where Im at right now.   

My kids dont have extended family anymore because they are selfish and rude and are just never going to 'get it'.  

Until you have a child diagnosed with a chronic illness you dont realise what grief really is.    And theres stages to grief, denial, anger, survival, asking for help.    Its very traumatic.   I gotta deal with it as it comes.    I have to feel the pain and express the emotions or I wont cope.

You cope your way - we will cope ours!

***
Diabetes is a tough master.  
It necessitates we think about our child, and food,  all day.   
All night.   24/7/365.    Never ending.

We have to stock our home pantries, diabetes supply bags and cars with the right carbs for emergencies.   We think about whats in the meal, and the GI of the carbs, what they last ate, how much medicine they had/need/will possibly need.  

We have to know where we are going, how long, and what facilities are there.   
We have to think about supplies like medicine, needles, blood glucose meters, strips, ketone strips, and spares of all of the above just incase.  We have to be able to carb count, and compute insulin on board.    More than that its an emotional disease.  
I have to prick my son and make him bleed at 5am, 8am, 10.30am, 12noon, 2pm, (sometimes at 3.30ish), 6pm,8.30pm,11.30pm and once more overnight.  Sometimes I test because hes upset.  

Perhaps hes low?
Perhaps hes high?
We are going for a half hour drive.   Test.
He tripped over.   Test.   Someone offered us a small chocolate.   Test.  
I have to give insulin to match carbs at 8am, 2 different insulins to keep my son alive.    I mix them together after counting what I need to cover his food, and what I need to correct his number.
Its all numbers.

I give medicine with dinner. 2 more needles.   A long acting to take him through the night.   Not too little so he spends the night high, and threatens hyperglycaemia then the horrific condition, ketoacidosis.   I give not too much so we live in fear of hypoglycaemia.    A 15 year old in the diabetes community just passed away from untreated low blood sugar through the night.  Every night is a gamble of insulin and carbs.    We are not immune from this reality.

We aim for what seems like the elusive balance.

So if you dance around on roof tops singing of rainbows good luck to you!

Love and hugs to you ALL on this journey.

Happy 2nd Birthday

You read that right!  

Mr Reuby-Roo is turning 2.    

Can you freaking beleive that!!!

Tomorrow when we wake up, hes going to get a bunch of books (yup Im a book freak) and a first Thomas the Tank engine BMX with parent handle.  Plus some cupcakes.  (Portion control).

Overwhelmingly Im sad that the last two thirds of his life have had the dark clouds of diabetes taking the gloss off his baby-hood.  Probably not for him, I mean hes a strong kid, a real coper and with a sweet disposition.   He has fun, he is soooo happy go lucky and very intelligent.    I mean, more for myself, that sadness that the worry and stress of managing D has been there, that sometimes I wish I was more in the moment, enjoying him climbing and running and playing and not freaking that his fall on the footpath was caused by a plumetting blood sugar.    Sometimes it is.   Mostly its toddlerhood.    Stupid, that normal baby naps should be celebrated and shouldve been my rest as a mum and a repreive each day, but infact have been some of our most stressful lows in the past 16 months.  


Thinking that the old blog needs to be re-vamped as Reuben is no longer a BABY with diabetes. Nope, hes had type 1 for 16months, (incase you havent read re: his diagnosis, since he was 8months), but now he is TWO.

Hes not a toddler in training, hes a tantrum throwing, door slamming, running away,  back chatting, repeating words he shouldnt,  defiant toddler, who turned the pen needle onto me tonight enquiring if he could give me a needle.

Hes active.   Hes like his brother and sister.   They are movers. Out doors-y kids with a lust for life.   GOD HELP ME  this next year as Reuben grows from age 2 to 3 - from toddler to child, the landscape of our life will again shift.   Diabetes will change and my biggest hope is his eating will improve so carb counting gets easier.    I also hope that we teach him some meaningful dialogue about diabetes so he can communicate as best he can of low blood sugars.   Right now he says 'lol lol' (lolly) to indicate he needs sugar, or if the mood strikes him 'joosh' (juice) that he would prefer fruit juice to bring up a low.    

Anyway,

HAPPY BIRTHDAY MY BABY SON REUBEN Heres hoping you have many fulfilling, fruitful safe years until theres a cure.

xx