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.