Monday, November 23, 2015

One chapter over another just beginning

This story night not interest alot of you, but I wanted to document it so I always have the memories.
If you are brave enough to read then make a cuppa and get comfy :)

Everyone has challenges in their life whether they be lot of small ones or major ones and whatever they are they can turn your life upside down.
We had just moved so very far away from our home and family to a new state having only one family member or friend who was still an hour away. That in itself was a big change for us, having always been surrounded by lots of family and friends.
I still remember that day like it was yesterday, it was November 2001 and started of like any other day. The phone call from the Kindy that you weren't yourself and kept on falling over. We all just thought that maybe you had an ear infection affecting you balance.
By dinner time we realised that it was more than an ear infection, with your balance and your speech now resembling  a drunk old man. It was kind of funny that ER staff actually asked if you had maybe had access to any alcohol.
They ran lots of tests and worked out that your glucose level was really low. they stabilized you but were not able to tell us why it happened.  We were allowed to take you home but had a follow up paediatric appointment.
We didn't make it to that appointment before the next incident occurred, It was a week later when you were eating dinner that you had a seizure, started choking. You stopped breathing and were turning blue, thankfully your dad knew what to do, but it was extremely scary especially for your brothers who sat in silence watching the whole thing.
That was the start of what turned into many years of Doctors, hospitals and lots and lots of tests. Over the next 13 months with lots of seizures and low blood glucose incidents and almost weekly hospital stays before they were able to tell us what was wrong with you and why all this was happening.

The first diagnosis we got was Epilepsy, they told us it was genetic even though we had no history at all in the family that we could find.
The next diagnosis was the one that took the longest to determine. I remember them telling us that you had Hyperinsulnism.....something neither of us had ever heard of before. Apparently is was extremely rare and usually only seen in newborn babies or the elderly, which is why it took so long to diagnose.
What followed was many more years of testing working out medications and trying to control both of these diseases at the same time. There were many many hospital stays, lots of doctors visits and enough blood tests that you could almost do it yourself and lots and lots of different medications.

Jay was the one going through all the medical issues but this affected the whole family, John and I obviously had all the worry and stress piled on us worrying about jay and what was happening to him and would he be ok. We had to cope with all of these issues pretty much alone, having no family members close to us meant that there was no one there to help out, no one to come and takeover for a little while to give us a break. I remember one time in hospital when Jays paediatrician said to me "if you don't go home and get some rest I'm going to admit you".
We were extremely lucky to have neighbors  and a lady we met through the boys sport, who had become great friends who stepped up to the plate and helped out in anyway they could, looking after Josh and Dan so many times I cant even remember the number.
If it wasn't for Jules and Dale and Sharyn I'm not even sure how we wold of managed to cope and get through this so even though I've said it many times before we thank you guys from the bottom of our hearts you are our Angels.

As much as this affected John and I and I'm not even sure we realised it at the time, Josh and Dan who were only 8 and 5, were extremely supportive and brave. I remember times when they would be the ones ringing for the ambulance while I was with Jay. It was hard for them having there world turned upside down as well. Their little brother who they adored was sick and they didn't understand what was happening to him, their parents who hardly got to spend any time with them and not knowing if mum would be the one picking them up from school that day. Having to spend so many days and many times nights at friends homes instead of in their own home with mum and dad had to take a huge toll.
Whilst John and I both tried so hard to be their for them it was extremely hard and I am so proud of both he boys for the way they coped through the whole turmoil.

Over the years doctors were able to get things under control and with medications jay was able to get back to a pretty normal life. The epilepsy was our first hurdle overcome by 11 years old he was seizure free and a year or so after that medication free. Whilst they made sure we were aware that he would always be epileptic for now it was good. Something Jay was wrapped with because as he told us many times it meant that he would still be able to get his learners license when he turned 15!
The Hyperinsulinism took much longer, at first they were hoping that he may of grown out of it by age 12, we soon realised that wasn't going to happen.
Jay was amazingly good at making sure he took his medications, did all the testing at home he needed to and still handled blood tests like it was nothing special.
Finally at age 17 we have had our last specialist visit, our last hospital stay, our last lots of fasting tests. Earlier this year his Doctor gave him the all clear and a strategy for weaning of the medications.

The last 13 years haven't been the easiest and we learnt early on that there were alot of people worse of than we were. We got thru it thankfully as some family's never do.
Although it will be something he will always have and have to be aware of its time now for Jayden to move on with the next chapter in his life and enjoy making his mark on the world in his own special way.

If your still reading, thank you for taking the time to read about this time in our lives.

Lis :)

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