Over the past few weeks I’ve been really thinking about Gemma’s blog and how it’s been ages since I wrote.I haven’t been on the site much, and when I finally checked I COULD NOT believe that I last wrote in November 2014.
WOW! That was a lifetime ago.Our little boy Ewan who is mostly known as Thabo is already 4 years old.Bryce is 9 and Gemma is 11.
Writing her age down, makes me think of a day shortly after she was born.Her paediatrician sat Michael and I down and said to us - he’s really sorry for us, but this is going to be a long road.He said that she would be in ICU for at least 6 weeks.I remember my heart sank as I heard those words.I didn’t know how I was going to handle this pain and heartache for SIX WHOLE WEEKS.I didn’t think I would get through it.Little did we know that those 6 weeks would turn into a lifetime of pain and heartache, and we have ALL managed to get through each day with tremendous love and support from near and far.Gemma’s condition is part of who she is.
So much has changed in the past four years.We moved to Bloemfontein 3 years ago to be nearer to the schools.Although I miss the homeschooling and being with my children 24/7, they’ve been exposed to great sporting and cultural extra murals, and most importantly have met wonderful friends.Through our children’s friends, we as a family have met wonderful friends for life.
I see the last time I wrote, I was celebrating the fact that Gemma’s HBA1C was 6.8%.Up until that point we managed her condition purely with a low carb diet.
From about September 2016, Gemma’s started complaining on a numerous occasion of an extremely painful stomach.She was in and out of hospital twice before May 2017.There was never any real solution to her stomach pains, but something was definitely brewing.By May 2017, her blood sugars were continuously high, no matter how low her carbs were.We admitted her into hospital again.She is such a complicated case, and when her doctor tells us she is a AAA Typical case, as results showed that her pancreas was still producing insulin.She however, did need extra insulin to get those blood sugar levels down.We left hospital with a long acting Levimir Insulin and a short acting Novo Rapid Insulin.It would be 4 injections daily.
For a while this really helped, and in a way felt like a blessing, as we were able to have things like pasta in our house, and the occasional treat.She would be able to cheat and inject for it.
Previous to this, any cheat food would shoot her sugars sky high, and we would just have to wait for them to come down. Or try give her protein.The worst thing about this was just watching and waiting for those sugars to come down, wondering how much future long term damage was being inflicted.On her organs, her nerves, her eyes.Was it worth that piece of cake, or ice cream?
I can’t imagine now what it was like for her at the time to have some cake, and then have to shove eggs down.Yes, there have definitely been times when Gemma has come back from school and I’ve had to question her as to what she’d eaten - I could see it from the high sugars, but mostly on days when other girls had birthdays and brought cupcakes to school, she would hand it over to me when I fetched her, or give the cupcakes to her younger brothers.
The insulin pens did the job for just over a year.In about April this year, she started having extremely random hypo’s.I fetched her from school one day, and she was lying on her suitcase in the waiting area.There were moms and kids nearby, but for them it may have looked like she was just tired.I ran to her, and at the time she was using the Freestyle Libre Flash glucose monitoring system, so I was able to just scan her to see immediately that she was LO on the screen.I can’t even remember what I gave her to eat immediately.It’s only a 10 minute drive home, but by the time we were back her sugars hadn’t risen.I know after that I gave her all the sugary things I could find in the house - it worked out to be at least 60grams of carbs.Her sugars rose slowly, she was out of the danger zone, but it took 2 hours before she was back to a good enough range to actually function properly.
This was only 1 of the many episodes during that month.One that makes me extremely emotional, but extremely proud of Bryce at the same time.The three of us were home alone, Michael was away with Thabo for a week.I was in the kitchen with Bryce helping him with his homework.Gemma was in her room, and her sugars on this day were fairly low, but she was doing homework and I gave her a yoghurt to get by till supper time.A few minutes later, she ran past us towards where the cars were parked.As we ran to her she dropped to the ground, grazed her knees and continued running, till she rammed herself into the parked car.
I managed to get her up and carried her to the couch.Before I even tested her, Bryce was there next to me ready to pour syrup into her mouth.He took complete control, while I went to find her tester etc, etc!.We got her sugars back to normal with sugary food and didn’t administer glucagon at that specific time.There were 3 other episodes where we administered glucagon, and all of these episodes were not due to too much insulin being administered, often it was on a 0.5 dosage.
We admitted her into hospital one night in June when, after 2 glucagon injections, her sugars remained low for sometime.
Having now realised her extreme sensitivity to the insulin injection, we were advised to try the Medtronic Pump.This has been a life changer…………..but has taken a LOT of patience, as I believed it to be an IMMEDIATE cure.
Gemma’s team here in Bloemfontein has been absolutely phenomenal. I have no other words.Her Paediatrician, who is passionate about diabetes, her dietician - who I can message at any time of the day, and is there to answer my questions, however stupid they seem to me, and her Medtronic Pump Specialist, work together in such an amazing way that we finally feel we are not alone in this journey.We have met incredible doctors along the way,but our team right at our doorstep, has saved us numerous trips around the country searching for answers and support.
Back onto the pump…. For the last 3 months, we’ve downloaded results every 2 weeks and had the basal insulin and carb-Ratio’s adjusted.For the first time in the last 2 years, we have seen incredible results in her sugars, and the major bonus is she is able to eat almost anything she likes (within moderation), and we obviously have to count each carb to put into the pump.The pump does most of the work itself, and suspends any insulin administered when it predicts a low.She has a sensor that sends blood sugar readings to the pump continuously.
This system, however, comes at a huge cost.We are extremely blessed to have the family support and family business behind us that assists in covering the cost of all the insulin sets, sensors etc.I am quite excited to do Gemma’s next HBA1C, as I am sure it has come down.Her previous HBA1C was 9.8.
The last 2 years have been extremely emotional ones with many ups and downs. I have learnt a valuable lesson of counting my blessings each day. My greatest and most beautiful blessings are my husband, my children, my greater family and all of my friends.