Ramblings

 

This blog is a ramble.   Three or four ideas in one because Im tired.  

 

(Im always tired.)   

 

Sometimes caring for Reubens diabetes is like having another child to take care of.  

 

Its needy and demanding and stomps and rants.   Its constancy is exhausting.  

 

Even though its a part of him, when I think of my son, diabetes is like somehow a seperate thing.   A compartment I can tend to and then keep on treating him like a normal child.   As normal as can be, considering.   With his multiple daily injections I will be honest and say its morphed into a highly routinised life - despite what they told us at diagnosis.  Hes finally eating a full sandwich, or full serving of breakfast cereal.   Amounts I can quantify and carb count more accurately.   Full units of insulin that fit with those meals.   

YAY for that.  

2 years coming.  Props Reubs :)   

Right in time for his 3rd Birthday! 

 

I think back to the difficulty of all those 'guessed' quarter units with a syringe and wonder how we did it.  Shovelling food back into a cup to re measure and finally guess what he ate.  Then a guess at how much insulin to give to match the guessed food intake (argh!).   This picture below reminds me of the full first year.   I felt ragged.   Like I wasnt going to make it through.     

 



 

We did make it through.  D-Parents do it tough.  Anyone that says differently hasnt walked a mile in our shoes.

When I sneak into his room to poke his fingers through the night, I hold my breath.  I check hes breathing.  I look for the rise and fall of his little chest.   I peek at his hands to see if hes twitching or shaking.   He remains asleep but must sense my presence and  holds a finger out for me.   He inadvertantly begins sucking because this is our routine.   I feed him carbs in his sleep to stop his blood sugar dropping dangerously low.    And, I kiss his soft button nose, and chubby cheeks.    I hold his hand and he wraps his fingers inside mine.  Sweet Jesus look after my baby tonight help him wake safely in the morning.  The gravity of the disease is heavy.  He trusts me to keep him alive.   He does as I say and endures the needles, the pokes, shovels in the sugar to treat lows.   Lord, please never let me let him down.    Simple prayers, but desperate and full of love.

So far, we're a good team. 

Love to you all xx

Scanning food barcodes with smartphone

I dont post alot about my other kids, but I have 3.   My eldest son is about to turn 8 and hes a busy kid, with Tennis, Swimming, Athletics and school.  My middle child is my only daughter, shes in kindergarten; also very busy with swimming, kindy, tots athletics and a real desire for martial arts we just cant seem to squeeze it all in.   And then theres the hurricane, my D - child is willful (to be kind about it!) 

Anything to save time and headaches, is a saviour to me.   When dealing with diabetes, I need easy.

So I got onto this app on my smart phone, called My Fitness Pal.  You can plug in the foods you are looking for manually to see nutritional breakdown and add them to a diary if needed.   (Im interested in counting carbohydrates primarily).   The best part is a little barcode button.   When you press that, you can literally scan any food with a barcode right onto your phone and VOILA!   Carbohydrate count appears.    

Awesome stuff.

Did I mention its free?


http://www.myfitnesspal.com/

Rushing out of target today I thought, frickety frick, no idea how many carbs in that 35g mini m&m tube.   Nothing written on it either.  I spy a barcode.  BINGO> out comes the phone, click on my fitness pal app, bring up the food diary, hit barcode, line up the code until i see it on the screen, red line turns green, phone beeps, theres a read out of the nutritional info with carbs clearly listed.   Just love it.   Thought Id put it out there incase anyone else on the planet hadnt gotten onto it yet either!

Hope you are all having a good week.  

A week and a half with Type 1 Diabetes

This picture has come up on my facebook page several times as well as JDRF advocacy page and I think it deserves some time.  

Think on this- its only one and a half weeks living with diabetes.  

Non invasive blood sugar testing

So Im on facebook, um, occassionally sometimes okay, quite a bit.   I get a bunch of really interesting updates and one was on the accuracy of a relatively new non invasive blood sugar testing instrument.   Forgive me if this post is awkward, Ive been up since 4.30am!    More on that later,  it was never my intention to make this blog about diabetes news or advertise products etc, but wouldnt you know it, one of the most popular blogs Ive written is regarding the Animas Vibe.   Good news, its already included on the Australian private health cover prosthesis list, and the grapevine told me it would be released Down Under in the second half of the year :)   Woo!  Great news for Austrayyyyans.

I digress. Somehow it gives me hope and comfort to know theres scientists and researchers working not only on a cure, but on better management tools for my son to use in his lifetime.     Pricking your childs finger and making them bleed sucks.    Especially when your strip errors, or you hit a calloused spot and cant get any blood and have to re-do.  The early days that would make me cry.   Pricking my sleeping baby was...  awful.   The kid couldnt even catch a break in his sleep.   Sad.   Whats even sadder is now Ive done thousands neither He nor I flinch anymore.

Well, this technology is being developed by GROVE Instruments.   It uses near infared glucose detection.     What is it, and What does it mean?

No blood collection
No lancets
No pain
No strips
No swabs
Battery operated
Fits in pockets
Takes 20 seconds to measure real time blood glucose
See in the picture shes testing her earlobe?   Also you can test the fingers according to their site.

Incase you havent heard, theres also special tattoo ink by Draper Laboratories (nano ink particles) that changes colour according to blood glucose.  This is from TechCrunch.com website -

                         If the molecules mostly latch onto glucose, the ink appears yellow. If glucose levels are low, the molecule latches onto the glucose mimic, turning the ink purple. A healthy level of glucose has a “funny orangey,” color, according to Clark. The sampling process repeats itself every few milliseconds.

Theres also people working on using the fluid in the eyes to measure glucose.  Apparently it worked in rabbits.    Heres how the LOL cats do it.   

Hope you all get some much needed rest.  Have a great weekend everyone!

No, I didnt feed him too much sugar

I accompanied my daughter to a playdate with a kindy friend.  Sweet.  The 'friends' mother ran into one of her friends.   We were introduced and she was invited to stay.   This lady asked me questions and said things about diabetes that challenged me.   Challenged me not to yell at her.  In a previous blog I mentioned how talking about it, telling people, educating people is where Im at.  I dont cry anymore..but I may out of frustration.

What on earth did you feed him?

I had started to answer, he was a baby.   He predominantly breastfed, but had some finger foods and puree fruits and veges.   

Then, the penny.dropped.com.

Suddenly I saw where it was a going - a wicked winding path leading me all the way to self guilt and blame.  [Which btw I never bought and never will].  Was she trying in all her splendid maternal superiority to be sure she wasnt such a bad mother and caused her child to 'catch' type 1 diabetes through too much sugar.  

Duh.  The public needs more education, dude.

Yup I pinned him down and jammed copious sugar into him at 8 months. Yup thats it, you got it.   Clearly she didnt know that type 1 diabetes isnt a lifestyle disease like type 2.  I tried to say simply that food has nothing to do with it until the diagnosis and managing the disease.

As for the amputated legs/Dad died at the driving wheel while hypoglycaemic/cousin went blind I zoned out.    For her safety.

Endo appt this week, we were told to give no basal insulin at night.   Reuben isnt to be corrected before bed, as hes dropping like crazy.   The endo said it was highly unusual.   He said perhaps the day time basal is running longer than 12 hours?  Who knows Levemir only just got FDA approval for 2-5year olds and weve been using it 2 + years already and it never ran over 12 hours before.   Apparently the honeymoon is over and Dr isnt sure why the night hypos are happening.   Its tiring and bit scary.    So we are to do this 2 weeks to check our Novorapid ratio of 1:30 is correct for dinner.

Long story short, its just a thrilling part of the rollercoaster that is diabetes in our toddler.

6 month break? really?

Sheesh! Its really been 6months since I last blogged?  

Diabetes is still a huge part of our lives, by necessity of course.  

Does it still torment me?  Yes and No. 

It really does get better.  I seem to talk about it alot more now, without crying, without falling apart.   Maybe by educating people we can save a childs life.  (1 in 800 kids isnt a small statistic).  Its almost been 2 years of tests and needles and swag-ing carbs. 

The 30th May marks Reubens anniversary of diagnosis, and the 31st, the first day of the rest of our lives- iykwim!

Looking back, now I just want to say for parents of newly diagnosed babies, toddlers and children -

allow yourself all the emotions you need to cope; being pissed off is normal; anger and bitterness; tears and questions;

allow yourself to grieve and feel that sense of loss, of your freedom, way of life, of your 'healthy' child, the goodbyes you say to the plans you laid.   it takes time, and allow yourself that freedom.  it will make you a better d-rent.

allow yourself to be mediocre at diabetes at first.   dont beat yourself up.   we are all learning everyday and this isnt a small learning curve.... diabetes management is a full time job.

allow unhealthy people and relationships to move from your life.   you have to de-clutter.

another sobering thought is ; yes this sucks ; but it could always be worse. 

we are moving forwards, we have alot less of those terrifying wth?!! where did that come from type of hypo episodes.   we are better organised and more methodical in our approach.  Reuben is communicating better everyday and this helps.    Hes eating better and very active, so this is positive.

remember that the Lord chose you to parent this child with diabetes, thats truly special to think on.