Random, totally and unashamedly random.

This blog and its weary writer will be on a fortnights rest!@!

Two week vacation here as my son has a mid semester vacation from school (woohooo).  (can you say p a j a m a s   all day?)   Its not that I plan to be totally slack, (oh who am i kidding..yes I will be SLACK!)

 We will see how hes been doing with his first written report card in 18 months of schooling, pick that up this arv!

What do we have planned?  Ive put in new fruit trees, so lots of monitoring the garden, dehydrating some goodies, sourcing some items for our foray into poultry raising and designing a 'chook pen', and an adventure into home brewing. lol.   Lots of new ideas and frugal fun...(amazing how much fun my kids had with home made play dough and some self designed beyblades (found a spinning top idea on you tube and hubby got to work, kids loved making their own battle bowls!)

Its the eve of our virtual 5km contribution, (see the link to Reyna from Beta Buddies' sisters blog, Mommys a runner, who have teamed up to organise this wonderful event to raise money for JDRF-  diabetes research).  I  have to map out our best route and rope the rest of the fam into doing this with me, will post details when Im back. Good luck walkers and runners!   Thanks for organising this event  - OUR TYPE 1's NEED A CURE.

Blood Ketone Strips

If you truly look - every cloud has a silver lining. 

Ive nursed one child with an earache, one with a chest infection, the other (Reuben) with some mystery virus.
I think I was delerious after not sleeping 3 days straight.   He had crazy temperatures that spiked then subsided, and myriad other symptoms.   Result?  Crazy crazy blood sugars.   Ketones up to 2.7, BGLs in the 20's.

4 units of Novorapid to clear them... Now thats scary for us.    Freaking because seeing Reubs in DKA is all too fresh in our minds.  

Good news, Reuben is feeling somewhat better.   The earache is on the mend.  Chest infection less troublesome.

Even better news?    The blood ketone strips, essential to managing a child with diabetes...

HALF PRICE.

Apparently Abbot sell them onto Diabetes Australia more cheaply and therefore they can sell us with a saving.   So a box of 10 strips for $20 (2 bucks a strip, out of 10 which we can easily use in one night), is now under $10! for 10 strips.

Im happy for this little win.

I look forward to catching up with your blogs after I have a decent rest!

Happy Tuesday everyone.

Type 1 in the news - misleading

Today Im nursing 3 sick kids - again.    I get  a text message from an excited husband regarding this type 1 nasal spray.   

Quickly I googled the story - the opening headline is - 'Diabetes sufferers get a shot in the nose with new vaccine'.


The story can be read here -

http://www.couriermail.com.au/news/breaking-news/diabetes-sufferers-get-a-shot-in-the-nose-with-new-vaccine/story-e6freonf-1226074677993


A NASAL spray vaccine for type 1 diabetes could be available in two years, providing hope to thousands of sufferers.   (This is the line I take issue with.)

I read on to see that it is infact a preventative trial of the nasal spray, and there isnt hope being provided to anyone already suffering with the chronic illness.

I subsequently emailed them -

Greetings,

My 8 month old son was diagnosed with type 1 diabetes.   I fail to see how this vaccine provides any hope to him or anyone currently 'suffering' from the chronic illness.   This vaccine  is a preventative for those who 'may or may not' develop diabetes in the future - ?  .  Even with antibodies that show someone may be susceptible, theres no way of knowing if they would infact go on to develop type 1 diabetes.  I feel the story is misleading and its important to differentiate between bodies of research and trials that work on either - Prevention

Cure Therapies

or Treatment of the disease 

OR prevention and treatment of complications associated with the disease.

Do you get sick of reading misleading stories about type 1?

My non-D kids - Josephine

Recently weve been thinking about how our family is forever changed, the other kids possibly for the better.

More accepting and compassionate than they might be otherwise.

I watched as my older son took the hand of a disabled child and helped him on the slide at a playground.  My eyes literally teared up. 

My daughter tore around the place with a girl with burns down her arm.   We noticed the differences.   My kids seemed oblivious and it made me love them all the more.

They help me plenty with Reuben and just accept diabetes in alot of ways, it makes me accept it alot more readily than if I didnt have them and their wonderful personalities around.    My kids truly are a blessing.   Reuben is so lucky to have them. 

 

Josephine is my middle child.   She is 3 years old, and sister to two brothers.    One older, who is almost 7,  and one younger, almost 2.   She is a sweet, vibrant girl.   Headstrong and comedic.   She often takes an interest in Reuebns diabetes and his supplies and tests.  Heres her take on living with a type 1.   (Thankyou to this awesome blog , where she interviewed her 15 year old son about HER diabetes, have a read and see what he said.!)

What do you think Diabetes is Jo?

When you're sick.

Who has been sick?

Reuben.

I know a boy from on top of a tall mountain.   He is a boy on a bus, he had diabetes.   I know Jason, he goes to ABC kindy and has diabetes. He lives far away.   (Vivid imagination).

What does it mean for Reuben to have diabetes?

Hes just sick.   His mouth is sick and he coughs , its yucky.

Why do we give him needles?

Thats for when hes sick.   Theres drips inside.

When mummy pricks him and you see blood, whats that?

You test him with the meter.

What do I do once I see the numbers?

Give him formula.  Or sugar.

Do you think Reuben is normal?

Uh huh. Im normal too.

Do you love your brother?

Sometimes I dont like him.

Why?

Cos I have to run away from him.  Cos I dont like him, or play games with him.

Sometimes I do play games.

Does that mean you love Reuben?

Yep. Uh huh. Sometimes.

Do you think Mummy and Daddy are worried alot about Reuben and his diabetes?

Yep.

How can you tell?

He has to get medicine.  You test all the time.  You yell alot.

We go hospital with him.

Does Mummy love you?

Yep.  Sometimes you yell when im being naughty.

You know mummy loves you to the moon and back.   And youre a good big sister to Reuben?

Uh huh.

To pump or not to pump #2

The other day in the car - (on the way to the cemetary to visit my deceased Grandma, who we infact couldnt locate within the cemetary, on the way home from the fresh fruit/vege markets, where we didnt actually buy anything)  ..... Reuben was car sick. 

A big stinky vomit.   All I can think about is the insulin in his little body.

He had a hypo - without symptoms-  we treated it with a small chocolate bar, and later on, something else.

Then,   dun dun dun dun....   he vomitted all that !

He then promptly dropped off to sleep so we high tailed it home.

Glucose gel administered.

I layed next to a droopy Reuben in bed and breastfed him, hoping he could take some milk to soothe his stomach, then process SOME sugar.   Another test.    Still low.   15 mins later, still low.   Even after a tube of glucose gel, still too low for my liking.

Hubby was designated hypo-sargeant and me, I ran to the store for our fruit/vege supplies.

He hypo-ed twice more. 

Was it a tummy bug? We still dont know.   But we brushed up on the mini glucagon dosing and I made sure my husband knew how to use glucagon.   Never too late for a refresher on the big needle in the orange box.   Because of his body weight, Reuben only gets a half dose to treat an unconsious hypo.   So we talked about the event of needing to use it... hope not.  But there it is, maybe one day.

He finally woke from his sleep and he was coming up into range again.   (Thankyou coca cola).

After this frightening morning (just one of many threads in this crazy tapestry that is diabetes) we discussed a pump.    Realistically, discussed it.   

We couldve adjusted his basal or suspended the pump?

With MDI the insulin is injected in the AM.    It doesnt care if hes not hungry or vomits, it keeps on keeping on!  Its why we came off the 24 hour Lantus.   Kids are too unpredictable.    What hes on now,  Protaphane,  is an agressive insulin that runs all day, peaking at 6-8 hours after injection.    Its fine if you have a good appetite and want to eat.   It enables you to be flexible through the day with food choices.    If we drop that dose back one unit, its not enough.    If we increase it, its too much and dangerous for the lunchtimes we get food refusal or vomitting. ARG.  Today we are trying a half unit less to see if it makes a significant difference.   I hate to leave the house between 10-2pm.   I just know Im going to be stressed about food.   Reuben must be getting this 'vibe' about food and I hate it.

Please, pumping persons and  pumping mummys - tell me what you would do with your childs pump on a vomit or food refusal day!  Please tell me how much better this would make our lives.

Fancy a Farktum? Or cheap meatballs?

For those of you familiar with Danger Dad  - hes actually got a second quite fitting persona, affectionately and aptly named 'Tight ASS'   'Frugal Dad'.    Hes the version that waits until Tuesday to get DVD's for the kids.   Why?   Beccause its $1 weeklies and $2 new releases.    Fortunately to go along with $2 Tuesdays, the local pizza joint  four doors down has $5 large pizzas.  

We see new flicks and eat pizza until we have to adjust our belts all on TIGHT ASS FRUGAL TUESDAY.  Danger Dad just likes a bargain.  Why pay full price!  is his motto. 

Tonight we went down to Ikea.   We stroll along without any real intentions of buying furniture, maybe a few knick knacks, doo dads or thingymagigs..my personal favourites..  

Tonight I was almost convinced I needed a little tea light candle lantern.   

OOhhh the doo dads.   I mean, an avocado slicer  is a good buy for $3, right? .... RIGHT?    It helps you to slice avocadoes.   Better than you could with a knife. 

Say you were catering a large crowd, wouldnt that just be swell and dandy to whip out your Ikea Avo slicer :)     Truthfully, Ive used it once, it was infact rubbish at slicing avo's.   Perhaps it was something else?     

I just thought it was, but afterall it WAS labeled in Swedish..  Dont start me on the Ikea product names, they are freaking hilarious.  Remember the Barnslig or the Jerker?  The Jerker was a desk.   My personal favourites are the Fukta plant spray and Fartfull workbench.   The new Lyckhem? Not seen that yet.  Wonder if that will be a hot seller?  Hahahaha. The ever popular Farktum,  Duktig,  or Danger Dads new fave the Bumerang clothes hangers!!!
   
So today being TIGHT ASS TUESDAY theres also a special down at Ikea.   The cafe they have instore has a Swedish meatball and mash deal for $3 something or other.   Bargain.   We put the 2 older kids into the kiddy play area for an hour for free, while we head to the cafe to eat in peace (ANOTHER BONUS).  We get four plates of food for $20.  Im merrily munching away and feeding Reuben balls and mash from my plate and chatting, and out of the corner of my eye  I see Danger Dad/Frugal Dad whipping out a container from a plastic bag he has produced from the diabetes supply bag.   Im thinking 'WTF?'.    And chanelling my inner Reyna I muttered much like I imagine her saying it, minus the mascara ...'FFS!'   

He is stealthily moving meatballs, mash, chips and chicken schnitzels from the store plates to his plastic containers to take home (for work tomorrow he explains) with dexterity, poise and ninja ability.  

Im both proud and mortified at this point.   I mean, he paid for the food...why not?    And omg, is he really doing THAT ?   I pretended not to see what he was doing, and carried on eating with my face turning a gorgeous beetroot-ish shade,   lol.

So my frugal husband is heading through the checkouts and sees a sign that says $1 hot dogs, $1 softdrinks, and .50c icecream cones.   He cannot pass this one up.

Im embarrased people might recognise us as the people who stuffed themselves upstairs, and see us for the frauds we are, not actually wanting to look at their furniture, just eat their cheap food!

Balancing 5 hotdogs with sauce, a refillable softdrink and 5 icecream cones, we sit and try to relax. 

My kids begin screeching at top volume.  

Look at the hair!   Great - they are both turning and pointing.

Its purple.

Ok Ive heard them and I want to silence them.  I give them a subtle 'look'.   Nope, subtle doesnt work on my kids.   Maybe I should acknowledge their observation and they will be quiet.

Yes kids, purple hair.   Very purple.   Okay. Hope that did it.
Its purple that lady has purple hair!   Shes now incorporated jumping and pointing into this embarrasing performance.
No, Jo Jo, thats a man, yells her brother in a voice that could be heard across the oceans.
No, Bub its a lady. A laaaaaaaaaaaady.
Me yelling, shut UP kids.

Im hoping that if I have a look they will simmer down.   I turn to look at said purple haired shopper, a cranky looking emo with black and purple striped hair, standing oh, half a meter away from us.   (How embarrassed was I that I couldnt settle this dispute, I was too tired and ashamed to say I couldnt actually tell if it was a man or a woman.  But I can confirm the annoyed purple haired emo, had hair that was incredibly purple.  And they had heard every word...eek.)

This is just one of many episodes in my existence where I feel like the only semi-civilised member of my family. 

Toxic?

Lately Ive had a really strong pull to simplify our lives.  I guess as I go along on this journey I will understand it better.   Its the type of knowing thats coming from deep within my heart, in response to prayers about better managing Reuben and his diabetes.  Im not really talking about improving hba1c, though that would be awesome, but just seeing the bigger picture that will lead us there.

At risk of sounding vague and waffle-esque I'll try to verbalise it.

Part of this is about coming to terms with my own and my husbands FOOD issues.   Theres this desire again to source fresh and seasonal produce.   This saw us trapsing around fresh food markets over the weekend trying to get inspired.   All was good until the ride home, with a low Reuben, who vomitted his hypo fix erggghhh  (Im beginning to think the boy gets carsickness!)  so we had to rush home and brush up on the mini glucagon dosing protocol!

Hypos aside, I want to be mindful about preparation to preserve the nutrients packed within.   To avoid as much processed and packaged as possible.   To avoid nasty inclusions in our foods, listed only as numbers on the packaging.   To actually THINK about whether something that was created to be a time saver is infact doing us harm and it might be just as easy to prepare from basics in a well stocked kitchen.     I want to be mindful about waste and the animal/plant that gave its existence to give us nourishment.    I want to learn to do the things  I dont know how, because the supermarket has ample supply.

Now Im not going to rush off and buy a bunch of chickens and goats, but I did spend a day over the weekend with my hands in the dirt planting some veges. 

Im researching ways to preserve our own foods and really keen to try using our excess to make dried foods,  jams and perhaps can a few batches of something or other...

So thats its, a vague romantic plan, but one thats weighing so heavily that Im cancelling my gym membership today to devote more time and energy to it.   (Before you freak, Ive spent hours and hours and hours working out at the gym and feel I could be more productive with my life.) Time for change.

If I had a blueprint of what I want my life to be like - it includes a passion for fresh and healthy and to give that to my family.   To be simpler and less hectic.   To have time and space in my head and heart to devote to serving my kids and my family.  To get rid of the toxcicity of modern life to some extent.

Have a great day!

ANIMAS VIBE

Another reason to hold out on pump decision , or at least seriously consider the hospitals offer of a loaner pump sometime in the future, until this baby is announced as available here  (sigh- and perhaps it never will be, but one can dream :)  )... I would sign up for this one tomorrow!

Introducing Animas Vibe -

Animas® Vibe™, the first and only continuous glucose monitoring (CGM)-enabled insulin pump system with Dexcom G4™ CGM technology.  Animas® Vibe™ brings together the unique features of an Animas® insulin pump and the convenience of Dexcom CGM, which is the only sensor approved for up to seven days of wear.

"Diabetes is a demanding disease.  Companies like Dexcom and Animas work tirelessly to provide people living with diabetes relief in the day-to-day, hour-by-hour management that is required with this chronic condition," said Dr. Anhalt.  "By combining high-performance pumping with state-of-the-art CGM technology, we're able to bring people with diabetes tools to better manage their disease."  
Animas® Vibe™ marks the first integrated product offering from Animas Corporation, makers of high-performance insulin pump technology and Dexcom, Inc., the leader in continuous glucose sensing technologies.  Now approved in Europe, the product will initially be available to people living with diabetes in the United Kingdom, Germany, France, Italy and Sweden.  
Animas® Vibe™ offers:

• The latest technology available from Dexcom – Dexcom G4™, a tiny, round and flexible sensor with the smallest introducer needle as compared to Abbott Freestyle Navigator® and Medtronic Sof-Sensor®
• Advanced high-contrast colour pump screen technology, that displays glucose trends with coloured arrows and lines showing where and how fast glucose levels are shifting
• Dexcom sensor technology approved for up to seven days of wear, delivering more days of CGM data than those approved for a shorter duration
• Waterproof durability up to 12 feet (3.6 metres) for 24 hours for the insulin pump, with a Dexcom G4™ Transmitter that is waterproof at 8 feet (2.4 metres) for 24 hours
• Customizable alarms to indicate high and low glucose levels including a hypo-safety alarm fixed at 55 mg/dL (3.1mmol/L)
• Low basal increment (0.025 U/hr) across all available ranges (0.025 U/hr to 25.00 U/hr) for precise dosing
• Compatibility with Diasend® communications software, enabling patients to store, review and print both CGM and insulin pump data