Modern Technology Is A Beautful Thing...Part 2
Mase was diagnosed with Type 1 Diabetes on February 5th, the day his own pancreas failed his body - and by April 3rd Mase was the proud owner of his brand new artifical pancreas - his Insulin Pump.
Prior to April 3rd insulin was administered to Mase via injections. 5 injections per day everyday, and then in the blink of an eye we went to 1 'set' change (similar to an injection) every 3-4 days.
Let's do the maths - 35 injections every week vs. 2. Let's also add unlimited eating, and to a very hungry, active and growing 5 year old that was welcome news. The motto in our Type 1 house is - 'if you can count it, you can eat it'.
An Insulin Pump is attached to Mase via a set which is a small cannula that sits just under the skin. The cannula is attached to tubing which is then attached to his Pump. The Pump needs a blood glucose level and the grams of carbohydrates in the food about to be eaten. It then releases insulin to cover the carbs to be eaten and insulin to bring the blood glucose to a target level, for Mase that level is 6 (an optimum level is between 4-7). Prior to the Pump we injected Mase with insulin at meal times. As for snack times Mase was limited to foods with a carbohydrate count of 20g or less. The next time you are preparing a snack for yourself or your child take note of the carbs in the snack - there isn't much that will fill you up and that you will actually want to eat that meets the 20 grams of carbs or less criteria.
A round of applause for a beautiful piece of modern technology - The Insulin Pump.
Mase wears his Insulin Pump loudly and proudly in a belt around his tummy under his clothes, and it has been an absolute game changer. Occasionally I think back to those first days in hospital where we had to convince a screaming, scared, upset little boy that we were helping him by sticking him with a needle - that needle of course contained life saving medicine but no amount of explaining would help him. Fastforward to current time and Mase chooses his colour set for change over and preps all of his equipment with our help. Mase has taken it so well, he surprises us everyday. Somedays are harder than others of course but his Pump certainly makes it a little easier on him and a little easier to manage such an unpredictable disease.
Mase had such a short time on injections as we were fortunate to be able to organise a Pump for him so quickly and we are all so thankful for that.
Modern Technology Is A Beautful Thing...Part 1
On day 2 of our week long hospital stay after Mase's diagnosis our nurse asked me if I would like a CGM for Mase.
What's a CGM? I hear you say - well let me introduce you to a beautiful and most definitely life saving piece of Modern Technology.
A CGM is a Continous Glucose Monitor. If you look closely at most of Mase's cheeky hospital photos you'll see a small grey 'button' surrounded by colourful tape on the top of his bottom. Mase's CGM sends his glucose level information to his phone that he carries on a belt on his waist. The CGM sensor, no thicker than the width of 2 human hairs, is inserted under Mase's skin - we change it over 1 every week. It sends glucose information to an app on his phone that then shows his glucose levels and whether they are going dangerously low or high.
Because of the type of CGM Mase has we can then follow his levels on an app on our phones - yes!, there's an app for that!
The information updates once every 7 minutes and it is a beautiful, informative and empowering thing!
I returned to work 3 weeks after Mase's diagnosis and without doubt I was able to comfortably and confidently work again so soon post-diagnosis because, even though I was away from him, I could still see his levels.
For Type 1's who have a CGM it doesn't negate the need for daily finger prick blood glucose checks - Mase still does between 4-5 each day - it does help to show a trend in their levels. For Mase we found out quite quickly that his levels go dramatically low, and fast, when he is doing any physical activity. Basically the information is shown in a chart format on the app - you can see his level come plummeting down.
Now Mase had his CGM within 48 hours post diagnosis - so in the last 6 months since Type 1 came to stay we've had some sleepless nights and have had to treat him for lows (wake a deep sleeping 5 year old to get him to drink juice to bring his levels up to a safer level) through the night but we were alerted to them via an alert on our phones. The piece of mind a CGM gives is priceless. Without Mase's CGM we would religiously finger prick him to check his levels at 2am every single night. Do you know how I know we would have to do this? Because I know a girl who did it for her son every night for almost 10 years - the level of respect I have for her and her dedication to her boy can't be put into words. As parents you would do anything to guarentee your childs safety and well being.
We can thank the outgoing Mr Turnball for making CGM free to under 21's since April of last year. I cannot imagine life without it for Mase. While I type this Mase's level has bottomed out to 2.8 in his sleep (remembering that a safe and optimum level is between 4 - 7), I was alerted via the app on my phone. Without his CGM I would be none the wiser until I did a finger prick for him before I went to bed or at 2am -
the consequences are too much to think about.
All for the love we have for a Mighty boy called Mase
Mase's Support Network
It takes a village.
It takes a village and a community.
Actually, it takes a village, a community and a massive amount of amazing supporters.
Without all of these people in Mase's life his Type 1 journey to date would not be as positive as it has currently been.
Ben and my Type 1 Diabetes education for Mase began from minute one at the Women's and Childrens Hospital upon his diagnosis.
I thought my knowledge of Type 1 was reasonable when I considered my Grandfather was Type 1 and I work with Kerry (you remember Kerry?) who's son is Type 1.
I soon learnt that my knowledge, at best, was non-existent.
I simply had no idea.
My mum was along side of us learning the ropes at Hospital. All the daunting, life saving information was coming at us non-stop - the biggest crash course of our lives.
Other than Mase's immediate village (Ben and I and Mase's Grandparents) getting the best understanding of his newly diagnosed disease, the next challenge (I felt) we were up against would be passing this knowledge onto the teachers and staff at Mase's school.
We quickly found out that Mase was to be the 4th student at his school with T1D. Not only were the school staff and teachers extremely supportive (and already armed with knowledge) we were soon welcomed by the other fellow Type 1 parents - who were so comforting and uplifting sharing their stories and giving encouragement.
It has felt as though we were almost living at the Women's and Children's Hospital initally. We were at the Hospital for 4 nights and 5 days upon Mase's diagnosis. We then had weekly, then fortnightly, then monthly and now 3 monthly (for the rest of Mase's under 18 years of age life) appointents there. All of this time spent at the Hospital has meant that Mase, Ben and I have created very special and very important relationships with Mase's Nurses and Doctor - more wonderful people to add to Mase's ever growing community.
And now - a special mention to all of Mase's supporters, everyone who has read our blogs, shared our page, joined our Team and everyone who has already donated. Mase gets so excited to read the messages that are being sent to him, it means so much to him. With your donations it simply is just a matter of time before a cure is found. And we all need this cure. Now.
And an extra special mention to perhaps Mase's biggest supporter - his little sister Lulu. Lulu plays by pretending to check her blood sugar levels and she wants to 'bolus' (a term for administering insulin to cover the carbohydrates in food) for her meal and who gets upset when she can't do it the same as her big brother. At 3 years of age, Lulu couldn't possibly understand what is going on and what Diabetes actually is - but she wants to be involved and she wants to help. In the initial week of Mase's diagnosis both Ben and myself were pretty much offline trying to learn as much as we could at the Hospital - Lulu stayed between both lots of Grandparents during that time, we didn't see her. Our household focus, at times, must be entirely on Mase - it has to be. Type 1 has definitely impacted on Lulu and in a way, upon Mase's diagnosis, her world was turned upside down also - and still she supports him.
A village of family, by blood or by choice, and a village of dear friends.
A community of professionals seeking the best outcome and the best possible future for Mase.
A massive amount of supporters - all of you reading this, supporting Mase and donating to the Walk.
Mighty Mase - I hope you know that you are loved and supported by so many, and that it makes it just that tiny bit easier for you when things get hard.
hello everyone thank you for all of the donations love you all
The Diagnosis - third blog
There aren't too many life moments that are firmly imprinted on my brain. Of course there is the birth of Mase and Lulu and our wedding day - the day of February 5th 2018 is certainly one of those moments.
I think it is important to share the story of Mase's diagnosis, it will give some understanding to the journey Mase has been on and the journey we as a family have been on. Also, if sharing his story goes on to help another family have a safe and early Type 1 Diabetes diagnosis - than it is more than worth it.
If you read the information in the link in the last blog you would have read that 'when blood glucose levels are between 4 and 8 the body works at its best' - Mase's blood sugar level on admission to hospital was 39. Think of it this way - almost 40% of the blood running through his veins was pure glucose (or sugar).
We aren't exactly sure how long Mase was at that extremely high and extremely dangerous level and it isn't worth the energy to continue to think about - he was diagnosed early and before he was desperately ill.
In the days leading up to February 5th this year Mase was exhibiting the classic symptoms of pre-diagnosed Type 1 Diabetes, which were:
*excessive thirst - when I say excessive thirst I mean finishing a water bottle that holds 2 litres of water in less than 10 minutes and asking for a refill
*excessive urination - when I say excessive unrination I mean a boy who had been dry at night since 2 years of age wetting the bed a minimum of 3 times per night
*excessive hunger - when I say excessive hunger I mean breakfast was 4 Weetbix and milk, yoghurt, milo, banana, peanut butter sandwich, fruit cup, smoothie and asking for more food
*weight loss (despite excessive hunger and eating) - just before Mase's diagnosis I was getting him in the bath and suddenly realised I could see all of his spine and back of his hip bones protruding through his skin
The above symptoms did not start at that much of an extreme but built up over 10 days - which lead us to an appointment with our GP. I told the Doctor I suspected Type 1 Diabetes and therefore we started with a urine test to check glucose (sugar levels). I snapped a photo of the resulting test strip and sent it to Kerry - who then began calling me, and calling me, and calling me.
And now: let me introduce Kerry. Kerry is the girl that you want fighting on your side, in your corner, on your team. I think I might go the rest of my life and never meet another Kerry - she is that special, that strong and means that much to Mase and our family.
I work with Kerry and prior to Mase's diagnosis I would have called Kerry my friend, but now I would call her not only my best friend but our life saver. Kerry's son Tyson lives with Type 1 for coming up 11 years and prior to that Kerry grew up with her Type 1 brother. She knows the signs and the symptoms all too well and for us that knowledge was and is priceless.
I finally picked up Kerry's call after the doctors appointment while driving with Mase to pick up Lulu from daycare - the phone conversation went like this:
Kerry - You need to pack a bag for Mase and for you. I'm going to meet you at your house and we will go together to Women's and Children's Hospital.
Me - I have to pick up Lulu and Ben's working away and I think I'll take him tomorrow
Kerry - Emma. I'm not going to say it again. Pack the bags, I'll be at your house after 5pm
**Phone line goes dead** From the urine test strip and the previous conversations we had had about Mase's symptoms Kerry knew it was T1D - I somehow held out hope that it was all going to go away and Mase would suddenly be 'fine'.
I know she feels bad for how blunt she was, but her bluntness was absloutely necessary - it literally saved Mase's life. I think it has taken until now for that to sink in, if I had left taking him to hospital until the next morning who know what state Mase could have been in.
Kerry did a finger prick blood test on Mase when she arrived at our house and the glucose machine showed a reading of 'HI' which means his reading was over 22. She then checked for Ketones - I can't remember the exact reading but he was showing Ketones.
Ketones, if left untreated, can lead to a life-threatening condition called diabetic ketoacidosis.
We were seen very quickly at hospital and in a sick version of de ja vu Kerry, Mase and I were waiting in the exact same treatment room she sat in with her own son upon his diagnosis. Kerry was absolute gold to have there in that moment, I can't thank her enough for what she did. I know that her heart was breaking for us just like mine was and it bonded us forever.
It was a very hard couple of hours for Mase, it was getting very late and Mase was so hungry and tired - he hadn't been able to eat while we waited for the blood results - but then finally Mase had a diagnosis. Type 1 Diabetes.
When he had his very first dose of insulin it was like all those symptoms he had been experiencing that were impacting on his daily life just disappeared. He got a full nights sleep, no bed wetting, no serious thirst. The start of our new normal with our Mighty Man Mase.
He got through 1 week and 1 day of Reception before we were offline for 3 weeks trying to get our head around all there is to learn about T1D - and we have barely scratched the surface.
Thanks for reading such a long story, but again if it helps another family it makes it all worth it.
Please share and, if you can, please donate
Crash course in Type 1 - second blog
Following on from yesterday's first blog - I would like to strongly encourage everyone to read the information available by clicking the link below:
There is so much confusion surrounding Type 1 Diabetes.
Knowledge is power and the more the greater public is educated the safer my son and all Type 1's are out in the greater community.
Please take the time to read this information, it is delivered in a very easy to follow format - but don't be fooled, this is a very complex life threatening disease.
Thanks for reading. Please like and share our Fundraising page and better yet...please donate - we need you and we need a cure.
The More, The Mightier.
Walk For A Cure Fundraising
We are taking part in JDRF One Walk to turn type one into type none!
Type 1 diabetes is an autoimmune disease that can strike at any time. It affects more than 120,000 Australian families, and 7 people are diagnosed every day.
So our team is walking with the #JDRFbluearmy to raise funds for research to cure, prevent and better treat type 1 diabetes.
Please DONATE NOW and support our walk to change the lives of Australians living with T1D.
Our Completed Missions in the JDRF Blue Army
Thank you to our Sponsors
Pop & Nan
For our Mighty Mase xoxo
Ma And Pa
Love you Marcelus Vaea
Danny And Quynh Hodge
Great work Benny and Emma Love and best wishes to your family
Taumaoe And Hoeft Family
Mase, we are so so proud of you! We are behind you 100% Alofa Tele atu From the Taumaoe and Hoeft family.
Great work sifa family
Mightiest family I know 💪🏽 Kicking diabetes butt.. Love you guys.. xx
We love you so much Mase. We can't help but show off because we have such a brave nephew and cousin. Love you Emma and Ben for being the best parents I know. We don't talk or see each other often. But know we love you. Love AUNTY Lupe and Tuli, Sifa, Joyce, Adelaide and all the fam bamz in Mangere 🤗💕💕❤❤😚
We are with you all the way, love you all xxx🌈💗💙💚💛💜🧡❤️
Uncle Mase And Family
Sending love and support for our Mighty Mase!! Hugs from Dorea, Benmase, Noatau, Rexifa and Baby Emema ❤💙
good work benny
Uncle Matt, Aunty Bec, Cousin Cam And Cousin Maddy
Go Mase !!!!
Damo And Kate Thomas
School Mums And Work Girls
thank you so much for buying my slap bands. love from, mase
School Mum's And Work Girls
Thank you to everyone who has bought my bands!
School Mums And Work Girls
Thank to all the school mums and work girls
Mel And Nick Milosevic
We love you Mighty Mase! You got this champ. Keep up the awesome work Ben, Emma & Lulu. Alofa atu, Ofe, Mase & Noa
Good friends are hard to find and special little boys even harder xxx
You go girls xxx
Jasmyn And Craig Sadler
Love you guys 😘😘😘
Bonnie And Katie
Birthday donation xxx love you and had so much fun at the walk with you last week. Bonnie said, “best day ever”.
Loving you my mighty Mase. You make us proud seeing your smiling face. Fight the good fight my dear nephew. Love always Aunty Pepa and cousins Maika n Hano
So proud of you Mase xoxo
Donating to help support Colin, Tyson and Mase
Walk Day Fundraising
All the best cuz Much love to my neff Mase
Good job Ella. Love from Nana. X
Love you 1 billion infinity hundred Marcely Parsley :)
Benny And The Delaines De Laine
Glad to help hit an important target much love xxx The De Laines
Have fun doing the walk, a great cause- sorry I was delayed donating hope you still get your tshirt xxx
Great cause ,enjoy the day xx
Your support means so much to us all 😘😘😘
Carlos & Gordon Fiame
Hope someone finds a cure. Hang in there and keep being strong little cuz! Love your cuzzies, Carlos and Gordon from Auckland, NZ.
Kylie And James Horwood
Love & prayers for you sweet heart ❤️
To Tyson... Love Ginny xx
Jo & Ben Delaine
Happy Birthday Mase! We hope this helps a little and you have a great birthday party! All the best for the walk next week! From Archie and Skye
Love you so much! xoxox
Love you Ma and Pa xoxox
All the best guys. X
Rachel, Lily-mai And Mason Dobson
Goodluck Mase ❤
We love you to the moon Aunty Kerry
Good on you Ella! Good luck with the walk. Love Aunty Carrie xxx
Georgia From Team Georgia
Love your strength and look forward to seing you at the walk .
Good luck Miss xx
To Tyson and Mase ... love Dione