Mum - Im low! Well, kind of

Reuben's a verbal kid.   No denying hes just like the rest of us.  A talker.   Im hopeful he will be a great communicator also.   Right now, he has a few words, but his favourite, that covers all applications is "blehleelala blehleelaala bleleelalalal la la la". Its fast, its shrill, and accompanied by some 'gimme gimme' hands.  

He uses it to call the dog...

He begs for a drink this way...

Its how he communicates he would like something that you have...

He does it when its time to brush his teeth and he would like you to get his electric toothbrush down...

Its how he asks you to replay his favourite Thomas dvd...

He also uses it when he feels unfairly done by - by the siblings and needs intervention...

and now just to complicate things

Its how he communicates a low when he feels himself dropping fast.

Low blood sugar =  hypoglycaemia

A state of lower than normal blood sugar level.   Most symptoms arise from lack of glucose to the brain and this impairs function.

Symptoms of a hypo - episode - Shakiness, anxiety, nervousness, palpitations, sweating, cold, clammy, pallor, dilated pupils, pins and needles, hunger, thirst, weakness, mood change, inability to think straight, inability to help oneself, glazed expression, being disoriented, unaware or seemingly intoxicated, inability to drink and swallow without a lot of encouragement, headache, abdominal pains or nausea.

In a severe hypo, the signs have progressed to include:

inability to stand, inability to respond to instructions, extreme disorientation (may be thrashing about), inability to drink and swallow (leading to danger of inhaling food into lungs), unconsciousness or seizures (jerking or twitching of face, body or limbs).

Suck it up cupcake

Since the change back to daytime protophane, we have had some decent numbers.   Yes, hes bouncing around some, but we are hitting a few within the magical range which feels good and another bonus seems to be that the boy can eat what he likes until about 7pm.    Its definately alot less stress than trying to manage the novorapid dosage at each meal, considering morning tea was sometimes bigger than lunch on any given day.   Our biggest issue now is dealing with hypos as the Protaphane peaks at lunchtime, whether he wants to eat or not, or if hes napping or not!

Fabulous news - we have had 2 nights in a row where Reuben has gotten to a decent BGL just above 10 and held virtually all night.   This morning he woke at 6.9 and I cannot tell you how happy it made me.    I always stop breathing waiting for the monitor to finish thinking and beeping and display a number for us.  I nearly passed out this morning.  Probably from shock.     

I have been working at lowering the GI of our diet.  Just this morning I got the kids into oatmeal with barley, and going to make more things with polenta (made little blini) and quinoa (can be ground in coffee and spice grinder into a flour substitute) also beans and nuts.  Ive begun including small things, tweaking recipes and my husband has barely noticed (yay!)  [ I will eventually get around to a post to include some of the baked goods incase anyone is interested.]    

I think perhaps another contributing factor is R is just settling down activity wise... this has had a stabilizing effect on his food intake and blood sugar fluctuations. 


Could it be his age also, I mean will things be getting easier for us soon?   

Okay 8 months old was a little younger than kids are generally diagnosed with type 1, but 18 months, 2 years, theres lots of parents out there living with this scenario.   I wrote in a previous post how I found it hard to accept Reubs was growing up, but adjusting my thinking is critical to moving forward with his management.   At some point I have to take his lead and wean him from the breast.    At some point I will need to move him into his little todder bed.

After his endo check up and falling apart, Ive pulled myself back together!   I mean, I have to just do this thing day by day. Gotta accept it.  

You know, suck it up cupcake style!   Mentally Im back in the right place.   Plus my husband is wonderful and Im going to take a much needed vacation.

Weve gotten more organised.   Ive set up a control centre - not just a supplies cupboard but a basket of diabetes related items in our bedroom for quick access and a central spot that danger dad and I both respect.    I found some small flat lollipops with 7g cho which seem to be working well as a hypo fix for a busy toddler.   Food refusal is common in toddlers but a disaster when they have to get sugar on board.

I know this has been aimless rambling.  Ive been devoting days to spring cleaning junk and dumping unwanted items that Im exhausted from that, and stringing a few coherent words together has been a challenge!

I want to quit

If diabetes was a hobby, I wouldve quit by now.  

Im around reading your awesome blogs but havent had much time to comment.   

Im trying to soak up more knowledge about foods and what they do to Reubens blood sugar.   Im working at letting his insulin bring his numbers down, and struggling to keep him in range without too many hypos.   Ive bought a number of cookbooks and scouring them for more recipes and meal ideas that may be suitable for Reuben.   Also Im regularly checking the GI of different foods.  

Does anyone know much about Sago?

The older 2 kids liked it made into porridge.   They also loved the apple and peanut butter snacks someone suggested, so thankyou!   Anymore great ideas to help make my life easier - please comment for me!

Anyway, I figure I have to overhaul the entire families eating.  Again.   This is going to be hard since my husband is uber fussy.

Love to you all and your sweet D kids :)

If you dont laugh you will cry...

Diabetes doesnt make me laugh.   Nope its not even remotely funny.   But if I dont find something to laugh about, laugh at, people to laugh with...I may well explode.

I had a rotten day.   Not just a stinky rotten-egg-type day.   Not a peeeeew, did you forget to take out the trash a-few-days-in-a-row-type-of-day.   Not even a cloth-nappy-got-left-in-the-back-of-the-car-and-sat- in-the-hot-sun-all-freaking-day, type of day.

It officially sucked ass.

I was anxious all night, my alarm hadnt gone off for the 3am test as my mobile phone went f l a t.  YESSS flat.    I awoke desperate to pee at 3am anyway, I had a creepy nightmare about hospitals and some tumor I was supposed to have, with no mobile phone, no car, no money, no idea where I was and evidently nobody who loved me.   Argh.   Nasty dream.    I test Reuben and try to go back to sleep.  Felt like I shut my lids for a milllllllisecond and it was time to get my eldest son off to school.   I proceeded to spend the rest of the morning packing to get to our endo appointment.  

We had to be at the endos office at 10am.    We did well getting out by 9.15am, I think I had my obligatory 3 coffees in a world record breaking 15 minute time period.   Coffee is like liquid crack.   Well, Im pretty sure I havent had crack, but I imagine coffee is BETTER.   Smugly I pat myself on the back.   Got my handbag with phone, purse, keys.  Yup.   Got the insulin bag, food supplies, testers and strips, drinks? Yup.   Got toys and daughters DS.  Yup.  Got my water bottle. Yup.   Got 2 kids. Yup.   Got husband.  Yup.  We are all wearing shoes.  Yup.

Buckled up and on the road, with time to spare.

We chat a little, mostly diabetes talk.  B o r i n g.    The scenery is whizzing by as we head along the freeway.    We hear a cough from the back seat.    There it is again. 

Oh no Reuben's a little chesty.    Lets give him some water.   Hubby deploys the little cup off the bottom of my water bottle to the back seat, thinking Reuben just wanted a little sip of water.   You know, clear his throat.  Wrong, what followed was the niagara falls of vomit - into - the  -  cup.   Onto - his - pants.  Down - his -shirt.    My husband is a very sympatheic vomitter.   Its a perilous trip into town.  

We are freaking out.   Reubs now has no shirt on ..  Im scraping the vomit off his shirt and waving it in the air like a mad lady trying to dry this thing off, so he has something to wear to the appointment.   Its so smelly we hunt around the hospital but theres no place to buy another shirt.   Dried smelly vomit shirt it is.   When we finally arrive,  they are running a routine fire drill.   We were late anyhow.   Why not wait another half hour?

Out we go again. Into the hot sun with two cranky kids, a sea sick Daddy, very tired and grumpy Mummy who wished she'd had another coffee and remembered a hair tie!    The whole time Im worried.  Not about the fire drill, I knew there wasnt a fire or bomb scare, but about Reuben.   Hes gotten his injection of basal and a big brekkie bolus and just vomitted all his breakfast.   Darn.   Im so distracted and hoping its nothing serious, I cannot deal with another round of viruses or gastro right now.  Nope, NOT able.

Finally the pretend crime scene is okayed by the fire warden and we are ushered back inside.    My kids run around, they scream, they manage to fight over one book.  My daughter manages to insult a lady by saying shes fat and has a bunny tooth sticking out of her mouth.  I wished I had a shovel in my bag so I could dig a great big hole and jump right on in there.

Time to see the endo.   I have serious brain farts.   I cant recall what the numbers in his book mean.   I mean, I know he had breakfast yesterday, but cannot remember WHAT THAT WAS.  I mean really, I dont have a sieve for a brain, but I sure couldnt answer most of his questions in any intelligent way. Duh.  Yeah, maybe that test result was AFTER eating.   But I cant be sure.   It was last week.   Ummm.   And so was the tone for the rest of the appointment.   So the A1c has room for improvement.  Like usual.   Toddlers on MDI's can be tricky because of the kerfuffle around food.  The unpredictable activity.   The penchant for sticking bits and bobs in the gob, and thus catching colds and flus and stomach bugs :(  Oh and teething.   

I made excuses all the way to lunch.   I ranted and raved and felt miserable.  For me, for all the work we put in.   Even with a crappy A1C theres alot of thought and planning that goes into diabetes.   For Reubs who deserves the best care in the world.   For the stress of changing insulin regime again.   I cried in grief, and pity.   For him.   For me.   For my strained marriage.   For my messy house.   For never getting a break, or a holiday.   For not being able to go back to work.  For the time diabetes takes away from my other kids.   I sobbed in an embarrassingly loud and ugly way at the Chinese Restaurant where Danger Dad bought me a cold chardonnay and nodded understandingly while he pushed his rice around on the plate.   Think my hysterics ruined his appetite.  I have to laugh when the waitress brings me some napkins to blow my nose.

This isnt easy.   Especially when you are learning on the job.   Theres text book, then theres reality.     Technically his insulin should hold him steady through the night so we can get some sleep.    But will I be brave enough to switch off the alarm and do that?  

Diabetes isnt a text book, it has a human side.   Reuben isnt diabetes, he has diabetes.  But hes a toddler.   My precious son.    A little boy who loves balls and drums, and Thomas the tank engine.  A boy who loves playing with his dog and reading books.  A boy who looks up to his big brother and sister as the source of all things fun.   A boy who eats an apple one day, and loudly protests it the next.    

Gotta keep laughing.    You know what Im saying.

 

Hope for a cure

If I had to think of 3 words to describe my youngest son (and my type 1) I would say-

JOY

CUDDLY

SWEET

There are other bloggers who describe their type 1 children as sweet, and even include it in the title of their blogs.  My Reuben is...well... sweet.   Hes just a precious little boy.   My other kids, I describe as energetic, cute, entertainers, loud, quick witted, funny, caring, sensitive, smart, inquisitive.

But there it is. Reubs is sweet in more ways than one.  Stick with me , this blog IS going somewhere.

Recently I read how a blogger whom I love reading was talking with her daughter about a cure.   I beleive in a cure and I suggested she be encouraged by reading about the discovery of insulin.   To encourage MYSELF thats exactly what I went and did.   And I tell you what- I think its about time for a cure! This generation has seen so much in the way of technology - we may see a cure in our lifetimes.   

The story of insulin excites me however.   Heres some quick history on diabetes and insulin (and it wont be terribly historical or scientific-y thats just not how I am) - *refs at bottom

Ages ago the Greek wrote about diabetes, they were clued in.   The word we use now, diabetes, came from the Greek, and related to people wee-ing alot.   This is still one of the most recognisable symptoms.  586 years ago, Diabetes is first recorded in English, in the form diabete, in a medical text.   (Written around 1425.)
  
250 years after that, the word mellitus was added.  Came from the Latin, meaning "honey", a reference to the sweet taste of the urine.   Lots of years of focus on urine, for sure.    Ancient Greeks, Chinese, Egyptians, Indians, and Persians all noted this. In 1776 Matthew Dobson, confirmed that the sweet taste was because of an excess of a kind of sugar in the urine and blood of people with diabetes.  Indians had tested for diabetes by seeing if ants were attracted to the urine and called it 'sweet urine disease'.   I read once that a mother noticed her childs urine on a cement path  (before diagnosis) had dried out in the sunshine and left a 'substance' probably sugar... 

In ancient eras Diabetes was regarded a death sentence. Hippocrates didnt even mention it - he mustve felt the disease was incurable. Aretaeus did attempt to treat it but could not give a good prognosis; he commented that "life (with diabetes) is short, disgusting and painful."   Frick...

:(   This makes me immensely sad when I think about Reuben being born in a different generation and what his prognosis wouldve been.   For all the diabetics in the world, through the ages.   Immensely sad.  But the story gets better.

Some scientists named Mering and Minkowski found out that dogs with pancreas removed developed all the signs of diabetes and died shortly afterwards -   (this was in 1889.) They were credited with discovering the role of the pancreas.  

Now into the 1900's.   

In 1910, it was suggested that people with diabetes were deficient in a single chemical that was normally produced by the pancreas and  called this substance insulin.



Banting



1921, WHAT A YEAR!   when Canadian Sir Frederick Banting - (Did you know we celebrate WORLD DIABETES DAY, NOV 14th on HIS BIRTHDAY?)   and Charles Best  demonstrated they could reverse induced diabetes in dogs by giving them an extract [from the pancreatic islets of Langerhans of healthy dogs].   Banting, Best, and colleagues (especially the chemist Collip) went on to purify the hormone insulin from bovine pancreases at the Uni of Toronto.

Enter insulin injections....!

1922.   THIS IS EXCITING.  The insulin was tested on Leonard Thompson.  He was a 14-year-old diabetes patient who lay dying at the Toronto General Hospital. He was given an insulin injection. At first he suffered a severe allergic reaction (eek) and further injections were cancelled. The scientists worked hard on improving the extract (for 12 days Collip worked) and then a second dose of injections were administered on Thompson.

The results were spectacular!

The scientists went to the other wards with diabetic children, most of them comatose and dying from diabetic keto-acidosis. 

 They went from bed-to-bed and injected them with the new purified extract - insulin. This is known as one of medicines most dramatic moments. Before injecting the last comatose children, the first started to awaken from their comas. A joyous moment for family members and hospital staff!!
Both Banting and MacLeod got a Nobel Prize in 1923.  They shared their Prize money with others who werent recognised.  They made the patent available without charge and did not attempt to control commercial production. 

For this I am grateful.

Basically insulin was made and therapy spread rapidly around the world because of their decision.

Hallelujah.   Im grateful that my son has a chance to live because of these men and their work.   

The thing that gets me, and makes me hopeful is that theres people working on a cure, just like these men, right now.    They understand alot more.   Their tools are better. Technology is better.  Things are moving along rapidly.  

Lots of mice are working on the cure also.  (!)

For our sweet kids.

http://www.medicalnewstoday.com/info/diabetes/discoveryofinsulin.php
http://en.wikipedia.org/wiki/Frederick_Banting
http://en.wikipedia.org/wiki/IDDM

So Chuck Norris doesnt really have diabetes?

I needed a laugh today.   Or a drink.    I chose the laugh.   Ironically I dont think Chuck Norris really has diabetes?

We are still recovering from illness here.  Thats tiring in itself.  

Truth be told Im still recovering from diagnosis!  I really have no words to explain how tired this disease can make you.   How tired I get from thinking about diabetes. Numbers, food, his exercise.  Thinking about why the numbers are good.   Thinking about why the numbers are bad.   Why the numbers are swinging.    And its practically unavoidable for say...um another 17 years?

No words to explain my worry for whats going on inside of Reuben that I cannot see or know unless I stab him with a spring loaded needle that plunges into his sweet soft baby skin, then I squeeze until theres a big enough droplet of blood for the meter.  

Then he starts counting.  (yes the meter is a HE)   5.. 4.. 3..I begin cringeing about now... 2..oh cripes, the judgemental bastard... 1... then it either says you are going ok, you are doing a shit job or quick eat some carbs!     The accusatory beeps.   Im feeling some post traumatic stress disorder in relation to the darned beeping on the BGM's.  

Thats

 just a snapshot.   Dang we do this 24/7/365.  

I wake up and reach for the meter. No good morning honey.   My eyes open and theres the dang meter.   I give insulin shots before leaving my bedroom for a toilet stop, because the Levemir morning dose takes a while to kick in, its best given straight away so its there in the background before breakfast. (for R that is).  Its sad my baby gets a poke in the bum with a needle before he gets a warm drink :( :( : (     Its sad that this is my first 5 minutes of every day.  

Reubs knows how to open his blood glucose monitor case, arange a strip so that it enters the slot at the bottom!   He can also say TEST.   Sad I know.  This is his existence.   I wonder just how and when he will begin communicating Low and High feelings to me?    Enough on that.

Anyhoo.

Ive booked the kids in for autumn/winter swimming at an indoor heated facility.   This is the first time Ive decided to book Reuben in for some sports and Im sure its going to take some adjusting our routine and foods to make sure hes safe while we do this.   Hes going to be outrageously active like his big brother I can feel it in my bones.     The best part about feeling up to it now is, if I can get his spot on his sisters kindy day, while big brother is at school BINGO its a R and Mummy morning I can watch his numbers a bit more closely.  Up until now this has been too overwhelming to think about. Enter Mummy guilt -OMG my son is a year and a half old and I havent gotten around to any formal swimming eeeeek!   

The meter than died, the verio. an update.... I got a call after logging the fault.   They will replace it in a few weeks.   They are also sending me $50 for the inconvenience.   They quizzed me about whether any hospital stay was a result of this faulty meter... I said no... wonder what type of customer service would be offered had that been the case?

Suhweeet.

What about us - it isnt fair!!

Joining the DOC (Diabetes online community) has been a bit of an eye opener for me.   With Reuben coming up to one year with type 1 diabetes we havent met too many PWD or D-rents with CWD.   The ones we have met have been awesome however.   Being online, I quickly saw that the technology used overseas isnt whats available here in Australia, and to my way of thinking should be !

I am by no means resistent to getting Reuben on an insulin pump Im not sure if anyone had that impression or not, infact ever since diagnosis we've been looking into this.   MDI is what our hospital automatically trains you to use, and assume you will go along this path until you can afford a pump or need to change your insulin therapy to get better control.   Things are set up differently here, as Im sure the health systems in UK, US,NEW ZEALAND, CANADA and various other places are.

Where do I start?   We pay taxes that contribute towards a national health service called Medicare.  Over time different governments have tweaked it, stuffed around with it and various other shananigans (?) lol.    So if we have to see a general practicioner, (GP)   we can do what you call bulk bill - no money up front, and the government pays the service provider on your behalf.   These surgeries are busy, have huge waits, (massive overgeneralisation I know, this is just my opinion) and usually understaffed!  Hospitals are the same deal.   You can go in and get seen on Medicare, and not pay up front. But you gotta wait! )     If you walk into the dr's surgery down the road, they may ask for the full amount up front, and not offer 'bulk billing'. This is confusing since some do, some dont.... Because you have to pay, they never seem as busy.    Some of this money can be claimed back on medicare, but usually you are out of pocket upwards from $30 for the consultation.  

Then theres a PBS, pharmaceutical benefits scheme.  Again, some drugs are on this list for subsidy, some arent.   Insulin is on it, thank goodness, you foot a bill of around $30 from memory for $90 worth of insulin.   Thats pen fills for 5x5.  Weve yet to use up a full script.  Glucagon, only a few dollars, down from $50!

When it comes to diabetes care,  we have a National Diabetes Services Scheme.  The National Diabetes Services Scheme (NDSS) is an initiative of the Australian Government administered by Diabetes Australia. The NDSS delivers diabetes-related products at subsidised prices and provides information and support services to people with diabetes.   So our pen needle tops and syringes are free.   Testing strips are subsidised so a box of 100 strips, instead of costing $50, is only around $3.  More expensive items are glucose monitors, lancets and ketone strips, imo, should be heavily subsidised too as they are essential to diabetes care.    If you want you can go to a bulk billed diabetes centre (which you get an indefinate referral towards) and so nothing comes out of pocket for this either.    

(Please correct me if Im wrong or any detail is innacurate or over simplified!)

You can opt to contribute to a private health insurer to get medical extras partially contributed towards VIA them, if they feel like it.  (nudge nudge)   An example is dental work, you pay a premium month to month, and when you go in get the work done, you pay for around 50% and the health fund pays the remainder.  (Duh, we know who comes out in front on this one!)   

So physiotheraphy, podiatry, dental, optical, that sort of thing is covered under an 'extras' policy.    If you want an insulin pump you have to either pay out of pocket around $10,000 intial outlay or  if you hold private hospital cover and contribute for a year waiting period you can get this paid for under a clause in your contract that says they cover 'surgically implanted prosthesis' as a result of a hospital stay.  (Its on the prosthesis list, via Australian Government, Department of Health and Ageing, see below an excerpt to show whats payable by private health insurer and the list of available pumps).   This is only done every 4 yrs , I guess thats when the pumps warranty is up?  

*** if you dont have private health cover contact JDRF. You may be eligible for a one off payment of up to $6,400 (means tested I think) to help towards the cost of a pump through the Juvenile Diabetes Research Foundation - click below!

JDRF


Pump starts require a bit of jumping through hoops and rightly so, I guess they'd be dangerous in the hands of the untrained.    Theres seminars, nurtition and carb counting sessions and the a w a i t i n g list a few months long.    For us personally, theres also the issue of my husband getting additional time off work to be home and learn to operate the pump as efficiently as myself. 

One of my own big gripes is CGM, theres no selection.  The sensors and its unaffordability to the average person and family living with diabetes is insane...  $70 for a 3 day site (if it lasts that long).     I emailed Closing the Loop, they are trying to bring both the Omnipod tubeless insulin pump and dexcom Continuous glucose monitor to Australia.  See their response -

The voice of those people wanting the Omnipod in Australia has not been loud enough. 

 Photo credit and omnipod product info

While many have joined the 400 people who have signed the online Omnipod petition http://www.gopetition.com/petitions/omnipod-in-australia/signatures.html and many have written letters, this it would seem is not enough to convince the Federal Government and Diabetes Organisations that the Omnipod would be of value in Australia.   While this is very disappointing for us, we fear this may also have implications for many other new diabetes technologies in Australia. 

Recent delays and decisions by the Department of Health, delays in supply and lack of support for policy changes from JDRF or Diabetes Australia have caused us to rethink Omnipod in Australia and how we best go about achieving equivalent funding in Australia. We have now been in discussions with the authorities since 2008 and still have not achieved equal funding to what is provided to our competitors.

We have now decided to seek investors who are interested in assisting us build a case for equal funding for the Omnipod in Australia.        

Should you know of anyone who may be interested in investing in CTL to help us achieve equal reimbursement, please have them contact us.

Dexcom photo credit, products info

Dexcom will not be available until at least next year in Australia.

We thanks you for your ongoing interest in our products.

Regards

John Douglas

 ***************

Basically friends, spread the word!!    So now Ive waffled on for a bit, in summary, if we go get an insulin pump once our one year private health fund waiting period is up,  its a 4 year committment to a pump, at which time Reuben will be a 6 year old boy before we qualify for an upgrade!   I dont want to rush into
things, who knows what will happen!?


***************
APPENDIX- Surgically implanted prothesis list - you see theres a few pumps to choose from, none of them tubeless.
**

3.2.2.2.1 External Infusion Pump, Battery powered, Insulin, Generation 1

Managing Diabetes Pty Ltd

DF001 DANAIIS Insulin Pump Continuous insulin infusion pump 75mm x 45mm x 19mm $4,000.00

Roche Diagnostics Australia Pty Ltd

RO020 Accu-chek Spirit Insulin Pump Insulin infusion pump One size only $4,000.00 $5,000.00

3.2.2.2.2 External Infusion Pump, Battery powered, Insulin, Generation 2

Australasian Medical & Scientific Ltd

AN005 Animas 2020 Insulin Pump. Ambulatory Insulin Infusion Pump 7.4cm x 5cm x 1.9cm $7,750.00

Roche Diagnostics Australia Pty Ltd

RO001 "Disetronic Insulin Infusion Pump

System"

D-Tron plus Large Kit Blue or Anthracite $6,700.00

RO009 "Disetronic Insulin Infusion Pump

System"

D-Tron plus Small Kit Blue or Grey $6,400.00

3.2.2.2.3 External Infusion Pump, Battery powered, Insulin, Generation 3

Medical Specialties Australia Pty Ltd

MS031 Medical Specialties "Deltec Cozmo

Insulin Pump"

Ambulatory Insulin Infusion Pump Deltec Cozmo Insulin

Pump - each

$8,000.00 $9,360.00

Medtronic Australasia Pty Ltd

MC351 Medtronic MiniMed Insulin Infusion

Pump

Paradigm Model MMT - 715 Pump Dimensions: 5.1 x 9.4

x 2.0cm

$8,000.00

MC352 Medtronic MiniMed Insulin Infusion

Pump

Paradigm Model MMT - 515 Pump Dimensions: 5.1 x 7.6

x 2.0cm

$8,000.00

Managing Diabetes Pty Ltd

DF002 DANAR Insulin Pump The DANAR Insulin Pump is a small

device about the size of a pager. It

holds up to 300 units of insulin, which

is delivered continuously through a

small tube to the patient. The DANAR

Insulin Pump also has an integrated

blood glucose meter and remote control

via bluetooth communication.

75 x 45 x 19mm, 60grams $5,100.00

Medtronic Australasia Pty Ltd

MC353 Medtronic MiniMed Insulin Infusion

Pump

Paradigm Model MMT-722. 'Smart'

Insulin Pump with REAL-Time

continuous glucose monitoring

capability and with remote control

Pump dimensions: 5.1 x 9.4

x 2.0cm

$8,000.00 $8,950.00

MC354 Medtronic MiniMed Insulin Infusion

Pump

Paradigm Model MMT-522. 'Smart'

Insulin Pump with REAL-Time

continuous glucose monitoring

capability and with remote control

Pump Dimensions: 5.1 x 7.6

x 2.0cm

$8,000.00 $8,950.00

MC839 Medtronic MiniMed Insulin Infusion

Pump

Paradigm Veo Model MMT-554.

'Smart' Insulin Pump with REAL-Time

continuous glucose monitoring

capability, incorporating a low glucose

suspend and with remote control.

5.1 x 7.6 x 2.0cm $8,000.00 $9,500.00

MC840 Medtronic MiniMed Insulin Infusion

Pump

Paradigm Veo Model MMT-754.

'Smart' Insulin Pump with REAL-Time

continuous glucose monitoring

capability, incorporating a low glucose

suspend and with remote control.
  

Who needs a psychotherapist?

Ive realised since my last blog, that the very thing I have been avoiding because of the pain, may be exactly what I have to confront.

I said that it was too hard to think about "before" diagnosis. 

That it feels like torture.

And... it does.     

I find it hard to think back because our life will never ever ever be the same.  I conversely find thinking forwards just as overwhelming and painful.

Those days were carefree. Getting my baby to sleep through the night was an awesome thing.   Not filled with fear, dread, anxiety, multiple alarms to wake and test his blood sugars.    Fear of hypos.   Fear of missing a hypo.   Fear of administering too much insulin, the wrong insulin, sick days when he cant eat and we've already administered insulin.   Fear of the sound he makes when hes low.   Fear of the way he looks and the panic that grips me, the diabolical squeezing in my heart and pumping it three times faster than is normal.   Fear that I have to use glucagon for an unconscious hypo.  Fear that I will be so exhausted that I sleep through an alarm.       Fear of high blood sugars.  Fear of managing Diabetes so badly that Reuben will have complications in later life.  Fear of blindness and limb amputation and things that if I dwell on them make me hysterical with panic.

It seems appropriate to dig out some photos. 

This is Christmas day 2009.   Reuben was 3 months old.    It was to be his last Christmas diabetes free.      I feel so so sad looking at this picture.  I had a bunch of champagnes, it was simpler times.   No diabetes supplies.  Just a few nappies, wipes, spare outfit slung casually in my handbag.   A smooth unblemished tooshie, free from multiple needles breaking his skin.   No lypodystrophy, ( abnormal or degenerative conditions of the body's adipose tissue).  Heck, alot of words I know now werent even in my vocab!  Smooth little finger tips and toes that knew no pain.   A pancreas that appeared to be in working order.   No threat of ketones or gastrointestinal disasters that could land my son in hospital.    Not even one birthday party where he could rip apart a cake and just mung out. :(

It was decided that Reuben was our third and last child.  I was enjoying him, but noticed he was like Jekyll and Hyde.   Someone I loved, but couldnt explain the dichotomy of his moods.

My eldest son started his formal schooling at the beginning of 2010.   It was a busy time.   Reuben began getting random illnesses.   I was tired and strung out alot and also feeling quite isolated.   I began taking Reuben to the dr. to seek answers.   He was always hungry and thirsty and seemingly never satisfied.  When he could catch a break he was a JOY.  His sleeplessness at night was a real confusion for me.   It was like he was in pain.   Surely he wasnt teething already?

Id hazard a guess that this was March - two months before dx.  He was getting thin.   I explained this away as he was learning to crawl and cruise.

 The part that hurts is that he was suffering.   How grotty and acidic was he feeling inside?   Wailing and crying through the night, not being able to get off to sleep.  He was overloaded with sugars that he couldnt process without insulin, so he was wee-ing a bucketload.    He had tummy pains, vomitting, and was super thirsty.   I thought he had broken bones.   The GP didnt investigate my cries for help.   Im so sorry baby Reuben, I really did try to find answers for you.

If I had had even the first clue what was wrong with you, I wouldve demanded they did a blood sugar test on you.

But I had never heard of the symptoms of diabetes before.  Evidently the family GP hadnt either.    Do I blame myself?   Im really not sure anymore. I thought I didnt feel guilt.   Or denial.   Or anger.    But I really do. Im just good at lying to myself about my feelings so I can cope.

I stand up and be the PANCREAS you need.   I try to be reliable for you, be someone who loves you so much they will do whatever it takes (even at 9pm,10.30pm,11.45pm,1am, 3am and 5.30am).......

Accepting change

While Mum was visiting I casually mentioned to her that I felt like Reubs was permanently frozen in time for me.

Hang on.

Back it up!

Say what?

Yeah I know.

Thats what I thought.

Weirdo... few 'roos loose in the top paddock.   Few stubbies short of a sixpack.    (reaching into recesses of mind to find another good ol aussie euphamism)...   Few sandwiches short of a picnic...Elevator doesnt go all the way to the top...Few fries short of a happy meal.    Enough! I got on a roll.

Do I really feel like this?  Yeah its true *scuffing feet, looking humbly at the ground*  hes my BABY!

Yup yup.   But hes 18months old now.  

How could I feel like Reuben is permanently going to be stuck at diagnosis age to me?   I feel like hes still 8months (yes e i g h t months old.)   I look at him, and I see the tiny infant who had lost weight.   Smelling sweetly like those toxic ketones, vomitting, lifeless.    I dont think back to life before diabetes, I think that would just be torturing myself - the simpleness of those days.

Hes been growing and changing and learning wonderful things.   Hes talking, playing games, running, kicking balls, potty training, trying new foods, singing and dancing and sleeping fairly well (when we arent poking him at night and waking him to take in some sugary muck).   

I doubt that highly.  Hes social and gaining independence every day.   I dont baby him, because I have to discipline him just like the other kids.     Scissors can hurt you Reubs.  Climb down off the table, you could fall.    Dont put bags on your head.   Spit out the darts.   Dont touch, hot!  No, no more milk.  Ok, out of the bathtub (despite ensuing screams and protests, like any good mother would do).. you get the drift!

For crying out loud, next month is our 1 year dia-versary.   One year weve been doing this.   One year of pure survival.   Im talking about clawing my way emotionally from one BGL/injection/meal plan to the next, diabetically speaking.   Relief when we wake up safely each day.   Relief that we havent treated a hypo episode in 2 days.  Relief when something 'clicks' and I get new revelations about how to look after Reubs and his diabetes.    

Will I always feel this sadness and aching in my heart when I look at him?   Will my eyes always well up with tears when I think about diabetes and how unfair this is?   Will I baby him or not let him grow up like I do the others?  Will I ever see him cured, or have such good treatments that this wont be such a burden in his lifetime?  How will I handle talks with him about diabetes when my heart is this broken?    Will I always feel sad.  Will I always protect him like some freaking wild animal on acid?


My eldest asked me "Mum, if God made everything why did he make Reubens pancreas not work right?".    I had to explain that God made him just perfectly and its this world we live in thats the problem.    Its a tricky question to answer because I know Ive struggled alot with why us?  Why Reubs? 

Will this sharp stabbed with a dagger kind of pain in my heart ever reduce to a more dull bludgeoned with a baseball bat kind of pain?   (woohooo what a consolation prize that'd be.)

Mum suggested I see it this way because hes my last child - my baby longer.

I think I see it this way because to me hes so vulnerable.  Ever since his pancreas packed its bags and moved on out of functionality - I see a precious child who needs needs needs me.   He can rely on his Mum to always treat him with attention, worry and tenderness - like a mother with her newborn baby.   I dont think that will ever change, even when hes in the body of a grown man.

Home from hospital

Reuben is home!  The blood tests showed he was fighting a nasty virus called coxsackie - a strand of enterovirus, also known as Hand Foot and Mouth.   EEERRRGGGHHHH.   No wonder he couldnt swallow!

Now, Im familiar with this virus.   Reuben had it last year - right before he was diagnosed with diabetes.   It has been linked to organ failure in mice, and been linked by some researchers as a potential 'cause' of diabetes.   It made him pretty sick - this time he only had the throat inflammation/blisters and nothing else so initially they threw about tonisilitis?

The antibiotics and sugar in his drip really helped.   His numbers were great, until we brought him home.   Trying to keep the boy quiet until hes 100% is hard!   His appetite is back and thats all great.


A few significant things have happened.


Danger Dad spent the time in hospital with Reuben and it gave us an opportunity to re-open dialogue about our family routine and habits and things we could do to improve his management.  It also gave him 48 hour responsibility for R's diabetes perhaps this was a blessing in disguise?  Im sure hes gained confidence in his abilities.


We have formulated a few questions for the endos/DE's for our next appointment.    They have switched up his insulin, so we are still doing MDI, Levemir and Novo Rapid, but dropped his basal by half , day and night, and are adjusting the meal time doses currently.  Im looking forwards to not feeding the insulin all day and night.    What I do want help with is -what do you feed your D-kids for supper to carry them through the night?   Im prepared to try ANYTHING to get more stable night time reads.  Please leave a comment and tell me your experiences/ideas.    Danger Dad and I need sleep :)

The ambulance workers were wonderful.   As they went to leave the female ambo said to me, 'I have a type 1 kid, hang in there it'll be ok Mum.'    I nearly burst into tears that she understood.    Then came my R E A L L Y ? moment.   I honestly asked the lady 'Type 1?'   WTF is wrong with me.    This pisses me off, when people ask, type 1 or type 2.   I think it was a combination of being tired and caught off guard, but also that I have in real life met type 1's, MODY's, type 2's and one with neonatal diabetes.    So I guess I have to kick myself up the butt.  Its not always ignorance  - right?  I know all about type 1.  And I still asked!

Also, we got given a One Touch Verio to try.   We used it 4 times or so , and IT DIED!!   We just stocked up 200 strips for the dang thing!

Thankyou for the sweet comments and support Ive been fragile and terribly stressed! xx